Harry's Journey

How to help your terminally ill child die with grace ...

2011-08-15T15:02:00.000-05:00

Is it crazy that I would like to write book titled something like the above title? I am not sure that anyone would publish it and not sure that anyone would want to read it when they really would need to - and there probably are books like this out there in the palliative care world. But despite all of that the idea keeps bouncing around in my head.

I suppose the thought was triggered this time by hearing about yet another couple walking a cancer journey with their young daughter. A friend of mine writes for the Toronto Star and she posted on FB how she was going to interview Ellen DeGeneres in front of 6000 people ... the next day I checked out her story in the Star and it was less about Ellen (perhaps that story is coming) and mostly about the couple from TO who she took with her to the interview and managed to get in to meet Ellen - as a way to try to bring them a few moments of delight and diversion from the nightmare they are currently living. In June their 2 year old daughter, Stella Joy, was diagnosed with an inoperable and untreatable brain tumour and given months to live.

I read one of the mom's blog postings about all of the fears she is currently facing - am I strong enough to do this? how am I going to watch my child die? am I going to forget them? how do I make sure I don't? how will I ever walk by another playground again? who will i be if I am not their mother? - my heart ached for her so much. Having walked through the forest of those same questions, wondered those same things myself. I wanted to reach through my computer to hug her and let her know that, yes, you can do it. You won't believe it but you will. That through grace you will reach the other side - that in three years time you will come so far, you will be amazing. You will be the same person but also an entirely new person, but we all are - three years hence, aren't we?

There is so much I wish I could tell her - but so much I know she just has to walk through, experience and get to the other side. There are some things you can't know about until you experience them. You can't know how you will do it, deal with the death of your child, until you do.

Back to my book idea, my crazy book idea. We didn't know anything about how to help Harry die. We had so little time to prepare. I know that sounds crazy - he was sick for nearly 6 months so how is it that we didn't have time to prepare? But the nature of a walk with cancer is such there are places you can't go until you are forced there. I couldn't let myself start thinking about how I might help Harry die until it was clear he was really not going to stay. The crazy thing was, that started to materialize for me, really the day before he died, and only vaguely then.

Things changed so quickly - in two weeks we went from the 'there is nothing more we can do' conversation to Harry's death. We hadn't had time to really process the concept that Harry was going to die. We hadn't had time to accept it before it was upon us. Harry died so quickly we didn't even have time to get set up with hospice / palliative care.

But despite all of that - I think we did many things 'right' around Harry's death. But there are also some things I would have done differently, had I known.

We don't talk about death and dying much and pretty much not at all about the death and dying of children. But it happens each and every day. I want family's to know about how to keep your child at home. About how to comfort them. About how to find ways to say good bye. About how to take your time. How to cherish each passing moment. Apparently there are stages to dying that I think we should have known about - if we had it would have been more obvious perhaps that he was dying.

I think one of the best things we did was to keep Harry at home for nearly 24 hours after he died. We got to sleep with him in our bed one last time. We got to wake up with him one last time and have one last family cuddle in the morning. I know that might sound really morbid - but you can't know how much we cherish that last good bye - how much I think it helped Lydia especially to have 24 hours to say good bye to her brother. A number of close friends and family got to come and say goodbye. I don't want to suggest that all family's need to do what we did - but that finding the right way to say good bye is important - and taking the time you need to do it - not being pushed by someone else to hurry.

Anyways - it is just this crazy thought bouncing in my mind - must be the heat!

peace out,
Cynthia

Angel Day Number Three

2011-08-03T17:21:00.000-05:00

Today marks Harry's third Angel Day. Unbelievable. It feels like time has folded and we very quickly got from there to here.

It is another lovely August 3 in Winnipeg. Hot and sunny, though it did rain mid-day. Sebastien is sleeping and Lydia is waiting to go to the wading pool. In some ways our life isn't much different from three years ago. Though of course it is entirely different.

We are entering uncharted territory. Sebastien passed his 16 months birthday on July 25. I didn't realize until the day passed how much stress I was holding over this milestone. He is now officially older than Harry ever was. He can walk and is learning to talk, he can feed himself and climb up and down a slide and almost climb out of his crib too. He is a bundle of joy. He is so like his brother.

We want to do something for the kids today to mark this milestone - go to a park, play in the pool, enjoy our beautiful neighbourhood - the places that Harry loved.

We have come far, though our hearts still ache for Harry. We try our best to live in a spirit of positive hope and love in his honour.

We miss you Angel Harry. We love you.

Love and hugs and rainbows,
Mum mum mum.

Three Unbelievable Years ...

2011-02-21T22:01:00.000-06:00

February 22 2011 marks three years since we took Harry to the hospital. Three unbelievable years.

I wrote this story two years ago. But it is another one that I couldn't quite post. Here it is now.

Getting Sick In February

A year ago Henry went to India on February 4th, the day Harry turned 10 months old. That week Harry started displaying the first really overt signs that he was not well. Here is how I recorded the unfolding two weeks on Harry’s Baby Calendar.

Thursday February 7th, 2008 - “Ugh, back to waking up two times at night. Started Friday to Sunday nights so far.”
Friday February 8th, 2008 - “Harry allergic to soy? Had tofu (first time) at lunch & really threw up at nap time.”
Saturday February 9th, 2008 - “Really missing Daddy? Does not want to be out of my sight. Cries if I leave for a second, wants to be held most of the time.”
Sunday February 10th, 2008 - “Threw up at lunch again. Sick? Seems very sad - missing Daddy or sick.”
Monday February 11th, 2008 - “Strange, Harry wouldn’t nurse at both naps. He nursed a very little then fell asleep in my arms.”
Tuesday February 12th, 2008 - “Harry very off” “Car accident, rear-ended at stop sign at Arlington Street.”
Wednesday February 13th, 2008 - “Kindermusik teacher noticed he is not his usual self. Vomited again at lunch, sweet corn casserole.”
Friday February 15th, 2008 - “Vomited at bedtime.”
Saturday February 16th, 2008 - “Vomited yoghurt.”
Sunday February 17th, 2008 - “Harry is really out of sorts. Not at all himself, cries / fusses all the time.”
Monday February 18th, 2008 - “Wants to be held all day by Mummy. Won’t play with toys. Rarely crawls or ... “ (con’t on 19th)
Tuesday February 19th, 2008 - ”... to walk. Doesn’t smile or laugh (or very rarely). Waking up crying hard ...” (con’t on 20th)
Wednesday February 20th, 2008 - “... multiple times in the night. Wakes up crying in the morning, exhausted at nap-time. Not eating well.”
Thursday February 21st, 2008 - “A very different baby. Something is wrong.”

And the last entry I made on his calendar, the day we took him to our family doctor’s, the day we went to the ER. Friday February 22, 2008,

“18-19lbs, 29-30” He has lots 2 pounds since January?”

I take some small comfort in his baby calendar. I struggle with a huge amount of guilt over the fact that I did not notice he was sick earlier. That nasty voice in my head tells me, “You are a horrible mother, the worst mother in the world, what kind of mother does not notice her son is slowly dying of cancer?” Noticing earlier may have made all the difference in the world. But I also have to always remind myself, or it might have made no difference whatsoever.

As Mona, our interior designer gently and wisely pointed out when I first met with her and told her a bit about our story, “Finding the cancer earlier may just have meant he would have been a sick baby sooner. This way, you had him as a ‘well and normal’ baby for as long as possible”. I am pretty sure I hired her solely based on that wonderful observation. I hope she is as good an interior designer as she is at knowing just what to say in a tender moment!

But I will always wonder. What if we had caught the cancer sooner? What if I had been more observant? What if I hadn’t been so bloody focused on defending my doctoral thesis? Would I have noticed in November or December that he was unwell.

But, I can with a small measure of comfort look back at his calendar in November and December. I recorded an observation nearly every day. Nothing startling or really out of the ordinary stands out. The only sign that there was perhaps something amiss was that in early December he started to refuse to eat his baby food. But it wasn’t that he didn’t want to eat at all. Rather, he wanted to eat what we were eating, especially what his big sister was eating.

For example, I had recorded, when Harry was just eight months old, over December 6-8th 2007, “Starting to refuse baby food - wants to eat what we eat. Especially loves mandarin oranges, apples, bananas, carrots to chew on. But can’t really chew or swallow great yet, a difficult time ...”.

And on the 9th, “Have to check when Lydia started finger foods, toast with liverwurst sandwiches.”

And I did check Lydia’s baby calendar. Here is what I wrote on August 4th-5th, just a few days after Lydia turned eight months old, “Lydia is getting to be a fussy eater. She does better when she has a spoon to hold, but often fights going into her chair. She doesn’t like much fruit, really only bananas. She seems to want more chunky food - what we’re having - but can’t chew it yet. So she gets frustrated.” I gave her liverwurst toast for the first time on August 11th.

So, coincidently, on December 11th, I gave Harry liverwurst toast for lunch for the first time and he ate it happily, despite only having two teeth at the time. The next day, December 12th, he really crawled forward for the first time.

Had I taken him to the doctors and complained, “He just doesn’t seem to be a great eater, he is a bit fussy sometimes” would that have made any difference? I imagine I would have been sent home with a comforting pat on the back, because, although the cancer had likely started growing in his liver at that time, I doubt the tumor would have been large enough yet to feel it.

Or maybe not. The three documented children that have survived from a diagnosis of a primary rhabdoid liver tumor were all diagnosed early, at a stage 2 or 3, before the cancer had metastasized. So catching this cancer early, any cancer really, is paramount to survival. This is something I have to figure out how to learn to live with.

We did not catch Harry’s cancer early.

When Harry first threw up on Friday February 8th, I figured he either had the flu or he was allergic to soy. We had visited with friends the previous weekend, and both their girls had just got over a wicked stomach bug that had them in bed for half of January. So I wondered if Harry just had contracted that bug. Alternatively, he had thrown up quite soon after eating the soy, and quite aggressively, which he had never done before. So I wondered if he was allergic to soy.

This was also the first time that Henry had taken a long business trip since Harry was born. As Harry was just at the age where separation anxiety can set in, I also was not sure how much of his crying and clinginess could be attributed to missing his Daddy. So that whole week from the 10th to the 16th, I was concerned, but just not sure what to think. Harry had never been sick before, and it was February in Winnipeg, so it was completely within the realm of possibility that he simply had a nasty case of the flu.

But I do remember that last Kindermusik class very clearly. We were in a class with several other children very close in age to Harry. One darling little boy was just about 8-10 weeks older than Harry. I remember suddenly being struck, at that class, just how healthy, strong and active he seemed compared to Harry. He was standing and nearly walking on his own. Harry looked so small and fragile, somehow, compared to him. And yet, there were two other little ones, a sweet, dainty little girl Rachel, born on April 1st and smiling Stephen born on either April 2nd or 3rd, neither of whom were walking on their own yet and both of whom were smaller like Harry. I just figured, “Sure, just Harry’s luck, with a Dad who is 6’3”, the only thing he’ll inherit from my family is *my* Dad’s short stature (he was 5’6” on tip-toes)!”

On Valentine’s Day, however, I became convinced there was something wrong. Toni, the mother of one of Lydia’s best friends at school, noticed it too. Lydia, Harry and I had made and iced a batch of heart-shaped sugar cookies to give out to her class. Harry and I came to class to deliver them. I realized when we arrived to the classroom that it would be best to wrap the cookies individually and place them in each child’s Valentine’s bag. So I handed Harry over to Toni, who was also staying for the morning, grabbed my coat and wallet, and ran across the street to the Kit Kat store to pick up some sandwich baggies. When I returned, Harry was in tears and beside himself with missing me. This was very odd, because he adored Toni and always reached to cuddle in her arms every morning when we dropped the girls off at school.

He had also had a massive and very smelly poop, which Toni had changed in the washroom, and which was unusual as well.

I quickly started depositing cookies in sandwich bags in Valentines’ bags, but Harry was so upset, Toni suggested I just take him home for his nap and she’d finish up for me.

So Harry and I headed home and he went down for a good long nap.

Later in the day, I took the last pictures of Harry at home before going to the hospital. When I look at those pictures now, I see a mostly healthy, but obviously sick little guy. But he looks like he has a bad case of the flu.

He does not look like a little boy, balancing on the knife-edge between life and death, his body about to be overwhelmed by the rarest and most aggressive childhood cancer known to man.

The last movie I took of Harry before we knew he had cancer, I also took that afternoon. He was wearing a darling red Christmas / Valentines suit and he was walking around the house, pushing his ‘Hippo Car’. He had not missed any developmental milestones. He rolled over early at 3 months, sat on his own at 6, crawled at 9 months and very soon after started furniture cruising, and was very close to walking on his own at 10.5 months. Sure he was a little behind his big sister on these milestones. But Lydia was early at most of her milestones. I swore I would not be the kind of Mum who compared my kids and made one feel bad for not measuring up to the other. He was well within the normal range, in fact on the front edge of normal for physical development, so I was not worried. He was Harry, not Lydia, and he would do things when it was right for him, case closed.

But, I was fighting an increasing sense of panic by Valentine’s Day. I can’t recall if Henry came home from India on the 13th, 14th, or 15th. But I was so relieved to have him back at home. I wanted to see how Harry reacted to his Dad’s presence. I wanted to remove that variable of separation anxiety. He was definitely thrilled to see his Dad. But Henry had to concur. He just did not seem to be himself.

I wanted to take him to the doctor’s office on Saturday February 16th. It had now been a week since he had first vomited his lunch. If it was a flu bug, I would expect some improvement after seven days. But he didn’t seem to be getting better. So I thought it was time to see the doctor. However, as luck would have it, this was the inaugural weekend of the much debated ‘long weekend in February’, (that economists were worried would throw the Manitoba economy into a down-spiral, My God, losing one WHOLE DAY of productivity, how could we handle it???). So Monday was a holiday, “Louis Riel Day” and our doctor’s office, normally open on Saturday mornings, was closed for the long weekend until Tuesday morning.

So we sat tight with Harry. But first thing Tuesday morning I kept Lydia out of school, or maybe she was under the weather too. In any event, I bundled them both up and arrived at our doctor’s office at 9:00 am sharp.

This was on Tuesday February 19th 2008.

The receptionist told me I had a choice, I could wait at least an hour to see our family doctor, or alternatively, I could see one of the other doctor’s in the practice, who was presiding over the walk-in clinic that day, right away. Well, I took one look around the already crowded waiting room, one look at my two kids, one of whom was already sick, the second of whom was questionably sick, but most certainly would get sick if we spent too much time in the germ-infested waiting room, and opted to see the other doctor.

We got into his office right away. I described Harry’s general symptoms to him. I can’t recall how well he examined him. I do remember I had stripped Harry down to his onesy and diaper. But he simply cannot have properly felt his abdomen. He examined both children, re-assured me that he had seen many kids with the flu the past week, and sent me back home.

But the next two nights Harry was up every two hours to nurse and he was crying hard and really difficult to soothe back to sleep. I so clearly remember, in tears, holding him up right, sitting in the rocking chair in his dark room at 3:00 am, looking in his face, those big blue eyes locking with mine, and begging Harry, “Harry, love, tell Mummy what is wrong. I know something is wrong. Tell Mummy what is wrong.”

But he was only 10.5 months, so he couldn’t tell me exactly how he felt.

I just knew in the pit of my stomach something was really wrong with him. I just didn’t know what. I thought perhaps he had autism. I remember sitting in the living room while he napped one morning that week and googling autism to read the early symptoms. The sudden behavior changes, withdrawn, crying, could be early signs. I remember thinking, “Okay, so he has autism, I can handle that, we can work with that, not ideal, but we can manage”.

Thursday afternoon I called our family doctor’s office and made an appointment to see our family doctor at 16:00 the next day.

Friday morning. Friday February 22, 2008. The day I was supposed to be in Guelph, walking across the stage, receiving the doctoral degree I had dedicated eight years of my life to achieving.

Instead, Friday morning. Harry sat limp on my hip in his sling when I dropped Lydia off at school. I talked to Toni. I tried to convey the increasing sense of terror. Toni comforted me and agreed, Harry’s eyes just were not his eyes. He looked vacant and unfocused.

When I went home that morning I weighted myself and then myself and Harry on the bathroom scale. I knew for sure in that moment something was so wrong. I had, without noticing, lost nearly five pounds since Christmas and Harry and I together did not crack 140 lbs. I was somewhere between 117 and 118 lbs, which meant Harry was around 18-19 lbs. Once again, back to his baby calendar, where I had noted he weighted between 19-20 lbs at the beginning of January.

I remember I phoned my sister, Sarah, in France, and told her I was so scared, I was sure there was something wrong with Harry. We had both lost weight. I was sure my body was doing all it could to pump as much into him through the breast milk. I pledged that I would not leave his doctor’s office this afternoon without him ordering blood tests at the very least.

I phoned Henry at work, could he please come with me to the doctor’s office? I didn’t want to be brushed off as an over-reactive mother. I knew something was wrong and I needed him to be there to back me up. Not many people say no to Henry.

It was a sunny and cold February day. I bundled Harry up in his snowsuit and then in the blue stroller bunty bag, reclined him so he would be comfy, and walked to the doctor’s office. A short fifteen minute walk from our house.

I remember pushing him. I can so clearly remember the walk. Just before we reach the doctor’s office we pass a halfway house of sorts. It has apparently been there for decades, a place where young women, “who have gotten themselves in trouble” as it used to be so unkindly put, were sent, especially from the country, to await their baby’s birth. After which, I imagine, they would be hushed back to their small town on the Prairie, their baby left with a family in the city. I remember thinking, well, when Harry is finished with some of his baby things I should put together a nice package and donate it to this centre. I made a mental list of all the things he would soon outgrow, that I might be able to give away.

I arrived with Harry to the doctors office and Henry arrived almost at the same time to meet us. We unbundled Harry from his little blue and red snow suit. He was wearing blue socks, his blue train robeez, navy blue pants and a blue and red ‘Joe-Fresh’ pull over top, with trains on the front I think. Henry held him as we waited for the receptionist to call our name.

In we went to the examination room, sat in the chairs, Henry directly beside the doctor’s desk / computer, me holding Harry now, in the chair next to Henry. I can see Dr. Van Rooyen walk in, greet us, as us what brought us in that day.

“Harry hasn’t been well for two weeks now” I said. “I brought him to see Dr. G on Tuesday and he thought it was just the flu, but I am sure something else is wrong.”

I pulled out a rumpled piece of paper upon which I had enumerated Harry’s various, but rapidly accumulating symptoms and read:

Always the good academic I had given it a title, “Health Issues for Hendrik Venema”

“Since Friday February 8th”
“Vomiting”
lunch Fri. Feb 8th (tofu)
lunch Sun. Feb 10
lunch Wed. Feb 13 (cheese? sweet corn casserole?)
dinner Friday Feb 15 (apple sauce & yoghurt)
lunch Sat. Feb 16 (yoghurt)

“Low grade fever, on and off”
“Runny nose”
“Night waking from 1x’s to 3x’s”
“Not nursing well”
“VERY fussy”
“Super separation anxiety”
“Cannot put down, clingy”
“Cries if I put down & can’t see me”
“Lethargic - puts head on my shoulder a lot”
“Doesn’t want to play, just be held”

“Not eating well”
“Chewing on hand a great deal during meals” - See vomiting above

“Minor car accident Tuesday” “Whiplash???)

“Father away for first time (2 weeks)”

“Virus?” “Teething”
“Separation anxiety”
“Milk allergy?” “Other?”

“Dehydration - how much should he be nursing? Can I give him 3% milk now if no milk allergy?”

“Nanny was sick, but he was already sick”

“Chokes & coughs a lot when eating. Dr. G asked about coughing and I said no, but not true when I think about it. He seems to choke and then cough to clear his throat, when I hear him wake up at night he does a big ‘choke/cough’ then wakes up crying hard”.

“Weightloss - 2-3lb? NOT growing, falling off charts”.

I knew something was wrong. I just didn’t know what yet. Henry backed me up and offered that Harry seemed unusually out-of-sorts since he had returned from India.

Dr. Van Rooyen listened carefully then said, “Okay, let’s check him out”. “Mum, can you undress him and we’ll take a look.”

I undressed Harry. I can’t remember if I undressed him right down to his diaper or if I left his onesey on. Henry is pretty sure he had his onesy off.

Dr. Van Rooyen checked his eyes, ears, nose, throat, all looked good.
Then he felt his abdomen. I was standing at the foot of the exam table, Dr. Van Rooyen on Harry’s left side. He tapped his two fingers over Harry’s lower abdomen and said, “Oh Mum, do you hear that, that isn’t right”.

My heart sank to the floor.

He tapped again. The room began to spin.

Its supposed to sound hollow and it didn’t, or maybe it was the other way around. He showed me again. It didn’t really matter. What mattered was what he said next. He said, “You need to get right up to Children’s Hospital and have an ultrasound of his liver”.

What? What? What?

I picked Harry up, disbelief and incomprehension already starting to wash over me.

“Is it serious?”, Henry asked. “What do you think it is?”

No answer.

“I don’t know,” Dr. Van Rooyen said, opening the door to his office that separates his two examination rooms. With his back now turned to us, picking up the phone, he dialed the emergency desk at Children’s Hospital. Waiting for them to pick up on the other end he repeated, “You need to have an ultrasound of his liver right away”. Then, in hushed tones, he explained to the receptionist on the other end, “I’m sending over a patient of mine right away, Hendrik Venema, H-E-N-D-R-I-K V-E-N-E-M-A, he needs an ultrasound of his liver right away. You’ll be expecting him?”

Henry and I looked at each other and at Harry with a growing sense of panic and disbelief. I had been ready to fight, to insist that we weren’t leaving without a blood test. Never, never, in my wildest dreams, did I expect the Doctor to be sending us up to Children’s Hospital for an ultrasound of Harry’s liver.

“Do we have time to go home?” Henry asked. “We walked here.”

“Our daughter is at a play date” I added, lamely, as if that had some relevance.

“Don’t rush. You have time to get home. Pick up some things. Then go to the hospital”.

There was nothing more to say. Stunned, absolutely stunned, we dressed Harry and left the office.

I remember the walk home. Henry and I felt so confused, anxious, terrified. How could this be? His liver? But he just had the flu.

We phone Toni to find out if Lydia might be able to extend her playdate with Natalie into her first sleep over. We explained that we had to take Harry to the hospital, we were not sure what was wrong. Could Toni keep Lydia for the night? We’d bring her pjs and sleeping things.

We made it home. I packed some diapers for Harry, grabbed his lovie Benjamin the Giraffe, grabbed Lydia’s sleep sack, lovie, pjs and sleep things and we strapped Harry into his car seat.

I don’t remember driving to Children’s Hospital or where we parked. We had never been there before. We couldn’t figure out how to get into the Emergency Room. I think it took us three tries to find the right door, although it is very clearly marked with a very big sign. I remember running in the dark, cold, February night. Trying to find the entrance, we HAVE to get in.

We walked right up to the triage desk.

“We’re here with Hendrik Venema, our Dr. called. Dr. Van Rooyen, to say we’d be coming. Harry needs an ultrasound of his liver.”

The triage nurse took Harry’s information and pointed us to the waiting room filled with snooty, coughing but mostly reasonably healthy looking children.

I held Harry. We tried to sit. I couldn’t sit. I stood, held Harry so close. Fighting to keep calm, not to cry. I looked around the waiting room. Wondered what other people were there for. I wonder what we looked like to them. A mother and father, both of their arms wrapped so protectively around their son. Terror so clearly written across our faces.

Did they know, could they tell, how terribly something was wrong?

I was always so thankful that we had been to our family doctor’s first. We might have waited for hours and hours on end in the Emergency waiting room, had we simply presented as yet another family who thought their child had a bad case of the flu. Instead, we waited for no more than 20 minutes. Our name was called and we were admitted into the Children’s Hospital Emergency, somewhere between 19:00 - 20:00 on Friday, February 22, 2008.

That is when the story-telling started. Again and again, every doctor, nurse, intern, specialist we met over the next 72 hours, always the same opening question, “Tell me what brings you here tonight”.

And so we began to tell our story, over and over. I know why they ask it so many times. With each retelling, a new detail, something new to remember, comes up. A thought that had been folded and put away, pushes back up to the surface, to be plucked out and remembered. Slowly they piece together the story and then they begin their tests, quantitative data to try to unpack, unravel, verify or falsify the qualitative story.

Half way through February

2011-02-15T13:01:00.000-06:00

Well, we've made it just over halfway through February. So far she has been a very gentle month - with the weather matching her most accommodating demeanour. Since when does spring come to Winnipeg in February? And not just for one day, but for long, lovely days at a stretch? Hello climate change, welcome to Manitoba. It is currently 2C - yes *above* zero! Incredible. And just what we need to melt snow now to help reduce the spring flooding risk.

Sunny, warm days like this, when the sun-warmed air actually kisses your cheeks as you walk outside are such a rare treat. But they seem to match my mood so very well.

We're getting there. We're getting through. Sebastien is so obviously a healthy, dynamic, delightful little boy. Watching him raises my spirits and hopes. He's doing great. He's going to be okay.

Three years ago, Harry was obviously sick. How sick, we of course had no idea. But he was definitely sick by Valentine's Day. He was having a hard time eating and keeping food down. He was fussy and clingy and just not himself. He wasn't sleeping well.

Sebastien is none of those things. He is starting to learn to walk. He can stand by himself for a few seconds - I'm not sure if Harry ever had the balance and strength in his legs to really do that. He can push our 'hippo car' around the house by himself. He loves to walk around the house holding onto our hands. He will be walking in the next month or so. Harry never learned how to walk by himself. Or I guess he never gained sufficient strength and balance to do it, though he was very close, before chemo and cancer enacted its final toll.

It will be wonderful but bittersweet when Sebastien learns to walk on his own. Wonderful to watch him take this significant step out of baby hood and into real toddler hood. But bittersweet to watch him reach a milestone Harry never had the chance to meet. But I try to tell myself, this is what Sebastien came for - to do all of these milestones with us. Harry came for a very different reason. For a completely different experience. As hard as it is to accept, he didn't come to reach these childhood milestones. He came to live and love hard and fast and quick.

On Sunday, I gave Sebastien his big brother's special pair of 'squeaker shoes'. These were little brown leather shoes I had bought for Harry's first pair of shoes. They are great shoes and have little squeakers in the soles so that when he walks they "squeak" along. I didn't know if I could or should give them to Sebastien. There are some things of Harry's I have not put him in. Some outfits in particular are just "too Harry" for Sebastien to wear. But a lot of Harry's things I have been very happy to see Sebastien in. It is a wonderful reminder of Harry to see his little brother wear some of his outfits. Mostly, I just go with my gut and know when it feels right to give Sebastien something of Harry's. And it just felt right that he should wear his big brother's shoes for his first shoes too. I guess in my own way, it is a way to give Sebastien connections to his big brother, who he will only know in waiting-to-be-born heaven! To whisper to Sebastien, "these were your big brother's, he wore them too, here's a little way for you to know him, to connect to him, to share with him". I can imagine my almost-four-year-old Harry running to his closet and pulling out his shoes and saying, "Here, Mummy, let Sebby try my old shoes!" Harry would want Sebby to wear them.

Seb is delighted with the shoes. He was all grins and squeals of delight when he first walked across the kitchen floor and heard their squeak. It is right and good that he should have this gift from his big brother.

Peace,
Cynthia

Rainbows

2011-02-10T22:26:00.000-06:00

Every now and then I wonder, did I just imagine all those rainbows I saw after Harry passed over?

Then, out of the blue, he sends me another rainbow, just to say hi.

This afternoon, Lydia stayed home from school so she could get ready for her big, "Father-Daugher Prostate Cancer Fundraiser Ball" at the Hotel Fort Garry. Girls attending the ball were offered free hair styles and manicures at a downtown hair salon. We went at 1:30 to the salon, girls were offered 'mocktails' and lovely cupcakes! Lydia had her hair done in lovely curls. It looked so beautiful! And her nails were painted a dark blue with extra sparkles. It was just so hard to believe that this beautiful little creature could possibly be my little girl!

We were back home to get Seb down for a nap around 2:30 - unfortunately he only napped for about 30 minutes. Well, by 4:00 we started getting Lydia dressed and ready. I was talking some pictures of her before we left, some in the dining room. Then I said, "Lydia, go stand by the big mirror in the hall so I can get a shot of you beside it". As she stood by the mirror, suddenly, her head was surrounded by a halo of 3 or 4 rainbows. I don't know what was causing them - we don't have any crystals in the window downstairs and I don't usually see them. Lydia and I both exclaimed at the same time, "Harry!"

It was Harry, telling his big sister just how beautiful she looked for her first fancy ball, wishing her a wonderful evening, telling her he is thinking of her.

Lydia said, "Hello little brother, oh you are so sweet, I have the sweetest little brothers!"

It was so sweet of Harry to come and let us know he is still watching and keeping an eye on his big sister!

Love,
Cynthia

Courage

2011-02-08T11:32:00.003-06:00

Having another child after you have lost one to cancer is really an act of courage, faith and hope. And this month, I need to marshall massive doses of each to wade through the days of the calandar.

One of the discussions Henry and I had while trying to decide if we wanted to have another child was how would we deal with the inevitable fears that would arise, especially in the first year? The fearful and weak part of me said, "Don't even have another child, it will be too hard and too scary". Nonsense, said my strong true self. To not have another child seemed like an act of cowardess, a giving into fear and despair. To not have had another child would have dishonoured Harry's memory and his teaching to live fearlessly, bravely, and with hope every day, jumping in with both feet.

We'd promised Harry we would always live grounded in faith and hope, like he had taught us. And what more ultimate act of faith and hope is there than taking the huge leap into the unknown and bringing another child into the world?

So, three years later, here we are with my beautiful Sebastien, a ten and a half months old bundle of joy. Every day, I feel like I am running the gauntlet - having to face my fears of Sebby getting sick. I know it is illogical. Harry's cancer was NOT genetic, there is no reason to believe Sebastien will get sick. Yet, knowing that there *are* siblings who have had his cancer manages to freak me out. But I remind myself, Harry's oncologist and the genetic researcher from the US, both said given the sporatic nature of Harry's cancer there was no reason to worry about our other children.

Damn logic, only gets you so far. Emotion is so powerful and illogical and such a huge pain in the ass. Mr. Spock was right.

I think the hardest thing right now is that Harry showed so few symptoms until he was really, really, deathly sick. His only real symptoms were being a poor eater and increasingly, a poor sleeper. So every time Seb has a rough night, my fear creeps, "Is it starting? Is this the first sign?" Every time he is a bit fussy at a meal and isn't enthusiastic about eating I start to fear, "Is it starting, Is this the first sign?" I poke his tummy daily to make sure it still feels soft. Look at his skin colouring, is he still rosey pink? I worry, worry, worry and practically make myself physically sick.

But I hate this, I don't want to live so wrapped in fear. I don't want to be in such a negative place. I want to stay in my happy, positive, joyful place. It takes everything I've got to drag myself there every day.

I see Seb's first birthday as such a huge threshold. I just want to get over that threshold. Though I know really, he is as likely to get sick after 12 months as before, somehow reaching that milestone healthy and happy just feels so monmumental in my mind.

But this month, I can't even think too much about that. This month, these next few weeks, I just need to get through the days.

It started three years ago today. Harry first threw up three years ago today. Three years ago, an eternity ago, yesterday. Time no longer means the same thing to me as it did before Harry died. Time moves differently. Parts of time, Harry's time, stand still. We move, slowly forward, from that glass bubble of time in which he is wrapped.

I think getting through these next two weeks will actually be the greatest challenge I have faced since Harry got sick. Finding the courage and faith and hope to trust Sebastien. Trust that he has come to be with us for a long, long life. Having the faith in him and in the compassion of the universe. Finding the courage to banish my fears and stay focused on the present. Reminding myself daily that *this* present, where we are now is NOT three years ago. We are in a very, very different place. Henry and I are so happy and content together. We love our house and our community. We are in a very good place. Lydia, my delightful Lydia, reveals the truth of present, joyful living each day. Our lives are incredibly blessed and full of joy. I just need to keep coming back to that each day.

And I need to always remember what Harry taught me - to walk on - walk on in hope, walk on in joy, walk on in happiness. So here's to walking through the next two weeks!

Peace,
Cynthia

Weights and measures

2011-01-12T18:42:00.003-06:00

Okay, so Henry and I weighed me and then weighed me holding Sebastien and there is no way he weighs less than 20 lbs. His weight easily added 20 lbs to my weight. So I feel a bit more reassured that the doctor's scale has to be off or the receptionist didn't know what she was doing.

I just want Sebastien to get his good appetite back and I'll feel much better.

He *did* climb halfway up his Aunty Sandy's basement stairs today. A first for him - he's never tried the stairs at home yet! Sandy said he got about half way up then seemed to realize that he didn't quite know what he was doing and looked around for her in a bit of a panic and squawked for help!

Harry couldn't climb stairs till he was 15 months old.

Lydia climbed stairs at 9 months.

See, Sebastien is much more like Lydia than Harry.

Off to play before bed,
Cynthia

Fear is the mind killer

2011-01-12T13:02:00.005-06:00

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.

Frank Herbert, Dune, 1965.

I have not written in months. I have composed various blog entries in my mind, but have not found the time to commit them to keyboard.

I would like to write about how wonderful Sebastien is. How we adore his impish smile. How his joyful laugh, almost indistinguishable from his older brother's, rings through our house and our hearts and brings a smile to our lips. How, after doing a 'military-style drag crawl' since he was six months old, he has finally, on new year's day, figured out how to do the 'classic baby crawl'. How he pulls up to standing whereever he can. How he has learned to clap and wave bye-bye and is starting to sign "all done". How he has 4 little teeth that transform his look from a baby to a toddler. How well he has been sleeping and eating. How much his dad and his sister and I adore him.

Instead, I am writing to fight my fears.

I knew when I found out I was pregnant with Sebastien, with his due date so close to Harry's birthday, that this time of year, during his first year of life, would be stressful. I keep trying to tell myself, it is normal to be stressed out and worried after what we went through with Harry, but that does not mean it is going to happen again.

I tell myself daily, Sebastien is NOT Harry. He has not come for the same life. He has come for his own set of life experiences and his life will be very different from his older brother's.

I hate fear. I hate what it does to me. It steals happiness, sucks joy, leaves one withered and dry and brittle. I don't want to just manage my fear. I want to banish it, destroy it, obliterate it and to replace it with sunshine, hope, love, laughter and joy.

I am kind of amazed, though I guess I shouldn't be, at how fragile I feel. I've generally thought that I've been managing pretty well since Harry died. I felt happy and so positive through my pregnancy with Sebastien. Up till now I have just been drinking in with joy each little moment, soaking them up and seeking to stay present to each wonderful moment with Sebastien.

The only indication we ever really had that Harry was getting sick in November and December of 2007 was that he was a fussy eater and his sleep pattern / night waking was getting worse not better with age.

By contrast, Sebastien has been a great eater, enthusiastically eating everything we've given him and eating more in one sitting that Harry would eat in a day. He has been a good sleeper too. To bed by 7:30 and only waking between 5 or 6 am to nurse then sleeping till 8:30 or 9:00 and napping a good 2-3 hours a day.
So, I've been managing fear really well. Confident that Sebastien is not Harry and will not repeat Harry's life experience.

But then this damn virus hits like at tsunami and I am reduced to rubble and left a crumbled mess in its wake.

Friday night, Sebastien spiked a fever of over 40C and I had to take him up to Emergency. Seeing as how well our *last* visit to Emergency with a baby turned out, it was gut wrenching to have to take him. I couldn't face going to Children's Hospital again, so instead I went to the urgent care centre at the community hospital in our neighbourhood. Turned out to be a good call. There was only one other person in the entire waiting room. And though the admitting nurses probably thought I was a bit of an over-reactive Mum, I gained some credibility when they went through their list of questions and hit the "any family history of heart disease, cancer, diabetes ... etc." Reporting that his older brother died of cancer at 16 months gives me permission to be paranoid, even in their eyes.

The doctor checked him out, ears and throat, heart and lungs, bowel sounds, glands, abdomen. All looked fine. Sent us home with a declaration that it was viral and nothing to worry about.

The fear starts to creep in because Harry had a basically identical viral episode at the same age. He was 8.5 months, it was in December just before Christmas. He spiked a fever in the night hours before we had to fly to Guelph for my doctoral thesis defense. He was feverish for 2 days, the day we arrived in Guelph and the next day when I defended my thesis. Then the fever disappeared as fast as it came on and he broke out in a tiny red pin prick rash. I always felt so guilty that I didn't take him to the doctor's. I had figured it was just a flu. We'd arrived in Guelph in a snow storm and were locked out of my mother's apartment for several hours while we tried to find her land lady to get a key (my Mom was in Poland for Christmas already). Then I had to defend my doctoral thesis, then spend several crazy days trying to get all of the changes finished to submit the final copy by the December 21 deadline. Harry was fine by the time we came back to Winnipeg so we didn't take him to the doctor here either.

I'm kicking myself for not having the doctor weigh Sebastien in the examining room. There was a scale there and I tried to weigh Seb while we were waiting. It was nearly 4:00 am so I wasn't thinking too clearly. But I *thought* he weighed about 9.7 kg or just over 21 pounds.

Well, we came home and went to bed. Sebastien has been mostly okay, but a bit under the weather. He hasn't wanted to eat as much. The fever broke mid-day on Sunday. Then on Tuesday afternoon he developed this rash, tiny red pin pricks all over his body. So I took him to our family doctor this morning.

Why does Sebastien have to have basically the same damn thing now of all times?

The doctor says he looks fine. He knows my fears so he always checks Sebastien's abdomen really well. His tummy feels fine. It is just a virus. Babies get 7 to 9 viruses each year. He will be fine.

But damn, I had the receptionist weigh him on their scale. Under 19 pounds. Not even 19 pounds. That doesn't seem right. He has gained less than a full pound in 2 months? I have long suspected that their scale is off. Now I am just spinning. If he is not gaining weight properly what does that mean? How can he be eating so well and not be gaining weight?

Ahhhhhhhhhh - I want to scream. No, no, no. I will not let myself get sucked into a vortex of fear. But god, the pull is so strong. I need to find a baby scale and weigh him again. Can a virus cause cancer? Can a virus trigger a glitch in your immune system which triggers a glitch in your DNA and causes it to mutate? If it were so simple then Harry's cancer would't be so damn rare, right? If it were so simple Big Pharma would be all over it selling us a high priced vaccine. But wait, no Big Pharma has no interest in a cure or prevention for cancer. Cancer is one of their biggest money makers. They have no interest in curing cancer. So maybe it is that simple. I don't like profanity in blog posts, but I really only have one thing to say, FUCK, FUCK, FUCK.

Go away, go away, go away. Fears, worries, anxiety go away. You are not welcome. I want you far, far, far away from me. I want to be busy living my life and enjoying my life and being happy and cheerful and full of laughter. I don't want to wallow in this muck.

How many days until March? I just want Sebastien to turn one a healhty little boy. Is that really so much to ask? I want to stay in the good, positive, joyful and happy place that Harry showed me existed. I want to get out of January and February unscathed.

Cynthia

Mindful thoughts, thoughtful mind

2010-09-08T09:35:00.009-05:00

Our thoughts create our moods, not the other way around. If you are in a bad mood, change your thoughts and your mood will change. It's one of the keys to happiness, intentionally choosing happiness, our experience with Harry's life intensely taught us that.

It suddenly hit me this morning, a different take on the story I need to tell myself about Sebastien and his future.

While pregnant with Sebastien, I worried: How much will he look like Harry? How much will he behave like Harry? Will he have Harry's laugh? Will he have Harry's gentle disposition? Will he have Harry's joy for life and living? And of course the biggy, the one I am so scared to even think, will his life *be* just like Harry's? Will he develop cancer and die too?

Every time the last thought even came up, I would cancel it, purge it, send it away and immediately replace it with another, positive thought for Sebastien's future.

And then my perfect, beautiful, delightful Sebastien was born. And he did look a bit like Harry. But he looks a heck of a lot more like his big sister Lydia. Funny that, the whole time I was pregnant I never, ever considered the possibility that he might look more like Lydia than Harry!

As he has grown and developed and changed over the past almost six months, we have gotten to know his delightful personality. Yes, he does behave a lot like Harry. He is as, if not more, laid back and easy going as his big brother. Like Harry, he rarely, rarely cries. He is content to hang out with us and play with toys, cuddle, bounce, swing. He does have Harry's joy for living, or so it seems. His laugh does sound a lot like Harry's. But he is healthy, and he is going to stay that way.

He is also a lot like his big sister Lydia. He has *her* joyful disposition. *Her* great laugh (it just sounds different coming out of a girl's mouth). *Her* joy for life and living.

While I know no two siblings have the same life, and so it is illogical to think that Sebastien will have the same life as Harry, it is hard not to worry. Especially as we enter the second six months of Sebastien's first year, since it was sometime in this time period that Harry started getting sick.

But I realized this morning that if Sebastien is going to have a similar life to a sibling, then there is no logical reason why he won't have a similar life to that of his big sister, Lydia.

I have kept "Baby's First Year" calendars for each child. I refer back to Lydia's and Harry's to see how Sebastien is progressing relative to each of them.

It just hit me this morning, that while his personality may be more like Harry's than Lydia's, his development is more like Lydia's. His sleep patterns, especially, have been very similar to Lydia's. Though he has been easier to soothe and slept better as a newborn, from 2-4 months he went through the same night waking pattern as Lydia and the same day sleep pattern - 3 or 4 45 minute naps a day, settling into 2 longer naps by about 4 months old.

And just like Lydia did at about 5.5 months, Sebastien slept through the night for 12 hours straight without nursing last night. All I did differently was put him to bed 30 minutes earlier, by 7:00 p.m., and had Henry calm him down after nursing, instead of me. He peeped at 1:00 am and made 2 squeeks at 3:00 am (when I checked on him to make sure he was still breathing). But he slept and didn't call for me till 7:00 am!

And that is what hit me this morning, Sebastien is a lot like Lydia! My beautiful, energetic, delightful, full-of-life-laughter-and-love, outgoing, and joyful Lydia! He looks like Lydia, he sleeps like Lydia, AND he is healthy like Lydia. Lydia my healthy as a horse, never gets sick, had her first ear-infection / antibiotics at age six first born!

THIS is the story I have to tell myself about Sebastiens' future - if I feel the need to tell a story of him being like either of his siblings at all - he is a lot like is healthy big sister!

This may seem really obvious to others, but it is strangely liberating for me. I really never thought before this morning just how much Sebastien is like Lydia. And as I watched her set off with her new "Maplelea" backpack, in her 'super skinny' jeans and stripped top for her first day of Grade 2, already looking so grown up. I realized what a joyful, happy image I have for Sebastien's future. He is going to be joyful, happy, and healthy just like his big sister!

Happy first day back to school!

Love,
Cynthia

Sebastien at 5 months old - 25 August 2010

Lydia's First Day of Grade 2 - 6 3/4 years old 8 September 2010

Lydia & Sebastien 8 September 2010 - Lydia's First Day of Grade 2

Photos of Sebastien's First Weeks

2010-04-22T22:11:00.001-05:00

Here is a photo album of Sebastien's first weeks. He is 4 weeks old today and weighted 9 lbs 5 oz last Sunday - so might be close to 10 lbs already!

Personalize your own photo book

Sebastien's Birth Announcement

2010-04-16T14:03:00.002-05:00

A free digital greeting card by Smilebox

Happy 3rd Birthday Angel Harry

2010-04-04T22:27:00.002-05:00

Happy 3rd Birthday my dear Angel Harry.

Mummy, Daddy, Lydia and Sebastien love you and miss you so very much. Toni brought 3 yellow balloons over for you to mark your special day today. Daddy made a chocolate cake and Lydia said you wanted it iced in blue with orange lettering - so that is what we did. All of your people were here for Easter dinner - cooked thanks to Auntie Kathleen and Uncle Gareth.

Today is a bittersweet day. A wonderful first Easter Sunday with your sweet baby brother, yet our longing for you to be with us in body, not only in spirit, is not diminished. How vast the space where you should be my little Prince. Where is my three year old, with his head of blond hair, racing through the house with his dinosaurs and cars? I still cannot reconcile that you were here and now you are not, all that has happened. Sebastien's presence fills us with immense, immense joy, yet he so clearly is not you, though he is very like you. I wondered how I would feel when he was born. I am once again overwhelmed with love for a new son. Yet his presence makes your absence more acute. There is no question that he is in any way a replacement for you. You are Harry and he is Sebastien. I adore and love each of you so completely as individual sons. I think I miss you all the more, or in a whole different way now that it is so clear that his arrival, an act of such pure love and joy and happiness, does not change our journey with you. It is another step in our life, but the joy we feel in his arrival does not change the grief we feel over your passing.

Ah my dear sweet Prince Harry. Mummy needs to sleep. Know that my love for you knows no bounds of space or time. Wishing you a very, very Happy 3rd Birthday.

Love Mum Mum Mum

Pictures of Sebastien

2010-04-01T08:53:00.004-05:00

Sebastien is a week old now. He is growing well - weighed 7 lbs 2 oz on Monday (Day 4). He is sleeping well, eating well and generally just a super sweet and gentle baby. We all thoroughly adore him!

Here is a link to a picasa album to see some pictures:

Sebastien Eryk Neudoerffer Venema

Welcome to the World Sebastien

2010-03-25T15:33:00.002-05:00

Sebastien Eryk Neudoerffer Venema arrived this morning, Thursday March 25, 2010, at 6:28 am, after a quick 4 hours of labour. We got to the hospital at 6:00 am - things moved *very* fast between 5:00 am when I called the midwife to let her know I was in labour and 6:00 am when we got to the hospital. He weighs 7 lbs and is 19" long and already nursing like a trooper. Best of all I delivered a healthy looking and intact placenta MYSELF (though it took nearly as long as Sebastien to come out!). We are already at home and feeling wonderful.

Will post pics when we can.

Love,
Cynthia, Henry, Lydia, Angel Harry & Sebastien.

Awaiting the Baby

2010-03-08T09:59:00.006-06:00

Me - 38 weeks pregnant with Baby Sebastien & in desperate need of a haircut (I'm getting one this afternoon).

I am now 38 weeks pregnant. I am decidedly 'done' and ready for my reward for nine long months of work - my precious wee boy! It has been a truly wonderful pregnancy. I have felt fantastic, slept well, avoided nausea, had no cravings or food aversions and in general have just felt so positive, optimistic, energetic and happy the entire pregnancy.

But all that said, I am done. The past week, I am no longer sleeping well, yes I know, practice for the sleep deprivation that lies ahead, but I'm at the point where I want to have the baby before I get too tired! The only comfortable sleeping position is on my left side, but after a few hours in that position my hips ache. I have to pee every few hours. I find I am so hot at night, which is unusual for me, but I think not helped by the fact that I am sleeping on top of one of Lydia's old rubber mattress protectors, to protect our new mattress just in case my water breaks in the middle of the night. Henry has to help me up off the couch or out of the car so I have definitely hit the "feeling like a beached whale" point of pregnancy.

I'm excited about the upcoming birth. Of course anxious too. I will, as I did for both Lydia and Harry, attempt to have a completely natural childbirth with Sebastien, unless intervention is medically necessitated. Any woman who has given birth naturally will understand the mix of excitement and anxiety that I feel. I truly believe that natural childbirth is the hardest, most intense work a woman can do in her life. While modern medicine does keep us very safe here in Canada, the fact remains that in childbirth, we do put ourselves in the exceedingly rare situation in our modern life of having to push ourselves to the edge and actually go to a place where we literally walk the line between life and death. I am anxious about having to go through the experience again, but at the same time, so excited to push myself in this way and to be given the honour of this experience with my baby.

In childbirth I have experienced the true depths of my power as a woman. I have gone into that other realm in the service of my child, fought through the depths of pain, and safely brought them through the veil, from the other side, and into this physical world of ours. It is such a privilege and honour to do this for my child. It is hard, hard, work, but with such great rewards, one of which, for me, has been to know and understand the depths of my own strength.

I suppose that is one of the places from which my strength comes. People often ask me, "Where did you find the strength to face your journey with Harry?" And I know one of my answers has always been, "Because I have given birth to Lydia and Harry - having given birth twice I know I can do anything!". I especially so clearly recall, after Lydia's birth, feeling so empowerd and in awe of all women who were mothers and feeling like, "Ah, I now know the secret, I can do anything, I have given birth".

I am also so interested to see what I will learn and experience through Sebastien's birth. While I am obviously a major participant, it is, ultimately, HIS birth experience. And my best intentions aside, his birth will be what *he* needs to experience and will be driven by his intentions, quite aside from my own. It will be dominated by his energy and who he is - and I am so excited to experience this and to get to know him in this way.

Lydia and Harry's births were very, very different, yet each so clearly matched their personalities and energies. I have always said that Lydia came to teach me patience and the ability to let go of my own false expectations, both of myself and of others. Her birth was an act of patience, but also of completely letting go of all of my expectations of how birth 'should' be and instead accepting the experience as it simply was. My body was so overwhelmed by Lydia's powerful energy and she demanded that things be done her way from the start! Harry's birth, in contrast, was a quick and easy 3 hours from the time that my contractions started till his birth - almost too quick! Everything about Harry's life was tinged with compassion - starting with his birth.

So I am so excited to experience Sebastien's birth and the first hints of his personality, of his energy, of what he has come to learn and what he has come to teach me.

The other emotion I am strongly feeling is that sense of deja vu - that sense of surreality that has run through our lives these past two years. It is a feeling of 'back to the future'. Three years ago we were the three of us, Lydia, Henry and I, waiting in March for our new baby to be born. Harry has been born, lived and died and now here we are again Lydia, Henry and I, waiting in March for our new baby to be born. I have to shake my head to remind myself that it is all real and that yes, Harry was real, I didn't just dream his whole life.

Every now and then, I catch a flash of the 'Harry that should have been'. Not too often, Henry and I agree, it is generally far too painful to let ourselves go there and it is to no avail. There is only pain in imagining a different path with Harry and imagining doesn't help any of us. It won't change what happened and it certainly won't bring Harry back, it just brings us to a place of unimaginable pain. But nonetheless, every now and then, I do slip into that place. We are upstairs getting Lydia ready for bed and in my mind's eye I catch a flash of the little blond head that should be chasing Lydia down the hall in his PJs not quite ready for bed, story book in hand, demanding that we read in his bed tonight. Or I see the other just-turned-three or nearly-three-year old boys in the neighbourhood or at church and then I can so clearly see the blond head that should be walking beside me to take Lydia to school or squirming in my lap during the sermon. In those moments we are confronted full force with the reality of what we have lost and it is almost too much to bear.

We have tried so intentionally to focus on the good parts of the experience of Harry's life. To focus on all the blessings he gave us and on all of the positive lessons we have learned. To make sure that we are better, happier, stronger, more compassionate and loving people for our experience with Harry. To not let his life have been lived in vain. But some moments, all of that still falls away and I am still overwhelmed with sadness and grief over his passing. It is moments now, no longer full days. I can move through it more quickly, though the intensity of the grief does not lesson. How can he not be here? How could his life have unfolded the way it did? What if we had never taken him to the hospital? Would he, like Schrödinger's cat, unobserved in the box, have remained healthy? Did the act of observation of his illness set or force the quantum wave collapse into the particle reality of him being sick? I know the 'what if' game gets me nowhere and does not help and I try to avoid getting sucked in, but, oh, what if, what if my beautiful blond-haired, big blue-eyed boy Harry were here, eagerly awaiting the birth of his baby brother along with the three of us?

Instead, I pray every day for Harry to watch over his brother in 'waiting-to-be-born heaven'. To reassure him, as only Harry his big brother can, that while he is leaving a place of love, he is coming to a place of love too. That he will be born surrounded by love and into love and through love. I am comforted by the thought that the last thing Sebastien will 'see' in heaven before he comes to us is his big brother and when he opens his eyes here, the first thing he will see are the loving faces of his Mummy, Pappa and big sister Lydia.

I am ready. I am ready to face this next step in the adventure we call life. Ready to push myself to the limits, ready to meet my new son.

Love,
Cynthia

The Worst Day of Our Lives - 2 Years Later

2010-02-24T23:46:00.004-06:00

February 24, 2010

Diagnosis Day - two years later. Henry and I concur, it marks the worst day of our lives. I wrote the following story a year ago. But for some reason I couldn't post it at the time. A year later, it is that much longer ago and I can handle posting it.

So much has happened in the two years since Diagnosis Day. It is 11:25 in the morning here in Winnipeg - a sunny day, Lydia will come home for lunch at noon. I am sitting on the couch in our new kitchen / family room, the 2010 Vancouver Olympics on the new TV, 36 weeks pregnant with Harry’s little brother. I thought I was going into labour last night, though it is more likely that the Indian food we ate for dinner did not agree with Baby S. At any rate, neither Henry nor I could sleep, awoke at 3:00 am to find the bed empty beside me. My back was really hurting and I had a wicked cramp in the my lower right side, so I went downstairs to find Henry. He came upstairs to give me a back rub. I have never had back pain like this before, was this back labour? I could not get comfortable - something else that was unusual. The only comfortable position I could find was sitting up in bed. So I tried to sleep sitting up - I think I fell asleep finally by 5:30 or 6:00 am. I had the overwhelming feeling of panic that I just *have* to pack my bag for the hospital tomorrow. I have never had a bag ready for either Lydia or Harry’s birth - we’d planned (and had) a home birth with Lydia (before we had to have an emergency transfer to the hospital for her retained placenta) and Harry was 3 weeks early - and I hadn’t yet packed my bag. So today I will.

I kept telling Sebastien, “Not today, you can’t be born today, not on this anniversary”. Good boy - he listened to Mommy!

Fortunately, I feel better this morning. I’ll see my midwife this afternoon. I am wondering if Baby S has just shifted and is settling down for birth - I am feeling kicks right in the middle under my ribs - when he has always been lying not quite head down (head to the right side) and I was feeling kicks on my right side. We’ll see.

Indeed (now it is nearly midnight) - some of my discomfort might have been Baby S’s movements - he has dropped and is head down and engaged ... am feeling lots of kicks right under my ribs in the middle - different from usual. Am measuring 36 inches and tomorrow I start week 37. So could be soon! Didn’t quite get my bag packed today - but will finish that tomorrow.

Love,
Cynthia

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February 24th, 2009

This morning we used the very last baby wipe in the house to wipe Lydia after her morning pee. We have no more baby wipes in the house. Just three or four empty Huggies baby wipes boxes. When I went into the water closet and saw the open lid on the wipes box, I sighed a sigh of resignation. We are done with wipes. We really have no more need for baby wipes. I had bought a big refill box just before Harry died. We have now worked our way through the seven packages of refills.

Every time I used a wipe, the smell reminded me of Harry. The smell of changing his diapers.

Today I pulled out our brand new box of ‘big girl flushable wipes’ we bought on Friday at Superstore for Lydia. Lydia is like her mum and gets very upset with her Dad when he flushes wipes which are clearly marked “do not flush” into our easily clogged and overflowing toilet. So we now have a brand new box of flushable wipes. Harry never used flushable wipes.

Today Lydia will go to school and daycare. I’ll go to the University. Henry will go to work. Lydia and I will go to Kindermusik, then the three of us will rush to catch as much of Jack Rabbits Hockey as we can. Today will pass and move into tomorrow.

But this is not just today. This is a year since Diagnosis Day.

Diagnosis Day

Exactly a year ago today, almost exactly at this moment, we were given Harry’s diagnosis.

I have replayed and replayed that moment in my head. I wish I could turn it off, but I know it will never go away. Of course, in some way I don’t want it to go away. I want every moment of my life with Harry carefully and perfectly preserved.

We were on CK4.

It was only about an hour after we had come back from the CT scan. Quick news is rarely good news.

I suppose the empty radiology department should have alerted us to the gravity of the situation, that and the fact that they had bought in a radiologist and technician on a Sunday morning to perform a CT scan that couldn’t wait even one more day. But you don’t think these clear thoughts at a time like this.

Henry was sitting in the chair by the window. I was standing beside Harry and the crib, with the side of the crib down when Dr. M walked into the door, clutching a pile of papers in his left hand.

One look on his face said it all.

“I am sorry, it does not look very good,” he said, his eyes dangerously close to glassing over and brimming with tears. “There is a massive tumor in his liver and it has spread to his lungs”.

I collapsed on the end of Harry’s crib.

“NO!” I screamed. “Not Harry, not my Harry, No, No, No, No, No, No, No, No, No, No. Not my Harry.”

Dr. M left to give us some privacy.

I was overwhelmed with tears. I couldn’t stand up. My legs simply folded underneath me. No. It was not possible. Not my Harry. Take it away. Make it go away. Take those words back. Not my Harry.

I screamed and sobbed over and over, “Not my Harry. Please not my Harry”.

And my darling wee Harry. He sat in his onesey on the crib. Little arm immobile on the IV board. He sat with his big blue eyes, silently looking at me. Not saying a sound. Silently looking at his sobbing Mummy. His blue eyes just looked at me questioningly, “What is the matter, Mummy? Why ever are you crying, Mummy?”.

Henry stormed out of the room to track down Dr. M, who was at the nurses’ station just outside our door. I could hear them talking outside of Harry’s room.

“How, what could have caused this?” Henry demanded to know. “Was it the baby food?”

We had tried a new brand of organic baby food since November. Very recently a number of batches of cereal had been recalled because it was rancid. It turns out we had been feeding Harry from three of the rancid boxes. I hadn’t noticed. Have you ever tasted baby cereal? It tastes blah and like cardboard. So I didn’t think anything of this new brand which, like all the others, tasted blah and like cardboard. Maybe if only one of the boxes had been rancid I would have noticed. But all three were and all three smelled the same. It was a new cereal, so I didn’t know that it didn’t smell the way it was supposed to smell. I am not sure if it was rancid so much as just stale.

At any rate, Henry was terrified that somehow ingesting this cereal had caused Harry’s liver cancer.

I could hear Dr. M reassure Henry, “There is no way this has been caused by baby cereal.”

Henry was not so easily dissuaded, “How can you be sure? How can you know? I did some research yesterday night and rancid cereals can cause liver cancer”.

Dr. M gently replied, “Put it out of your mind, that is not the possible cause. I think your wife needs you.”

I guess I had been sobbing, wailing and crying the whole time during this conversation.

In that moment, our world fell apart. We had been walking between two of many possible futures and in that moment we jumped, from the world we had been living in, the “Mommy, Daddy, Lydia and Harry perfect family universe” to the “Mummy, Daddy, Lydia, Harry-has-cancer-family-on-the-edge-of-a-nervous-breakdown universe”.

Henry came back into the room. He picked up Harry. Harry still maintained his sweet silence and looked at us, his sobbing parents, with his big blue eyes and his quizzical look on his face.

My phone rang. I answered. It was my friend Jodi. Was everything okay, she wanted to know?

“Jodi, oh my God, Jodi, Harry, Harry, Harry has cancer. They just told us Harry has cancer.” The words spilled out in a jumble. My heart raced. The room spun. Harry has cancer. I remember kneeling on the pull out chair-bed by the window.

“Wait, wait, what do you mean? Cancer? He has cancer? I’ll come right away. Where are you. I’ll come right away.”

I don’t completely remember if I have the details of that conversation, or any conversation really for that matter, completely correct. But I know that is the gist of what was said.

We knew we had to phone our families.

I think the hardest thing for both of us was telling our parents. We both dreaded more than anything telling our parents that their wee Grandson had cancer and it did not look very good.

I was so worried for my Mum. I dreaded telling my Mum. We were still reeling from her house fire in 2005 and her heart attack a year ago. How could I tell my Mum, my dear sweet Mum, who had lost her own husband to cancer thirty years ago, that it was all happening again. But it was Harry, my wee Harry, this time?

I have been told by many people through out this experience with Harry that I am a strong person. I don’t really know what that means. I just do what I know how to do. I suppose if I know what to do, it is because I come from a family of very strong women. Women who are quiet, shy, rather reserved, don’t announce their presence in the world or demand a great deal of space or attention. But women who silently, in their quiet, patient way, work and do and hold up the worlds of others.

I talked to my sisters, one in Poland and one in France. The conversations are a blur, except for the two times I said those words, “Harry has cancer. Liver cancer. It has spread to his lungs, it does not look good”. We didn’t know the words ‘stage four cancer’ or ‘primary rhabdoid tumor of the liver’ yet, those were to come.

We agreed that we could not let my Mum be alone to hear this news. I think it was Cecelia, my big sister Cecelia, always in control and always knowing what to do. Said she would phone my Aunt Phyllis and Uncle Murray in Mississauga to see if they could drive to Guelph to be with my Mum this afternoon, so that they could be there when I gave Mum the news. I come from that kind of family, where we can phone up our Aunt and Uncle on a Sunday morning and give them terrible news and ask them to jump in their car and drive for 45 minutes to be with my Mum. And they do it, without question and without hesitation.

The second hardest thing I have ever had to say to my mother was, “Mum, we got the CT scan results and it does not look good. Harry has cancer”.

Jodi arrived. Kathleen and Gareth arrived. Dave and Grace arrived.

Sometime in between all of their arriving we met Dr. Stoffman. Harry’s oncologist.

We had our first meeting with Dr. Stoffman in a tiny closet of an office on CK4. We were shaken to our very core, raw, full of disbelief, stunned ... cancer, Harry has liver cancer, none of this made any sense. He had the flu, he just wasn't getting better from a nasty flu.

At this first meeting, Dr. Stoffman told us that, thought they would have to do a biopsy surgery to know for certain, their first guess was that Harry had 'hepatoblastoma' a childhood liver cancer. His cancer was a Stage 4 - which meant it had spread or metastasized from the original site to his lungs and lymph nodes and because of the extent of the liver tumor, around 80% and all four lobes of his liver were involved, surgery was not an option at this point. Harry would need chemotherapy to shrink the tumor first then we would attempt to surgically remove the tumor.

This was the best case, we would do 4-6 rounds of chemotherapy and the metastatic disease would be gone and the tumor would have shrunk enough to allow for a complete resection. While you can't live without a liver, livers do grow back - you can remove most of a liver and it will grow back in a couple of months.

I think one of my first questions was about a transplant, "Can I give him part of my liver? You can transplant part of a liver right? I can give him part of my liver?" I would have done it in a heart beat for my son. I think his answer was something like, "let's not get too far ahead of ourselves".

"What are his chances?, What are his odds?" we wanted to know.

"A Stage 4 Hepatoblastoma diagnosis has around a 20% survival rate".

There was a glimmer of hope, that was all I needed, the faintest, palest glimmer.

I can't recall what else Dr. Stoffman told us that first meeting. But I do remember leaving the little room and going back to Harry's room feeling like I had been hit by a truck, but also relieved. After two terrifying days, we at least knew what we were facing.

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Harry’s Journey

Later that evening we were transferred up to a room on CK5, the hermetically-sealed oncology ward at Children’s Hospital. One of the first things I noticed was the smell. The ward has a very particular smell. I came to identify that smell with the smell of chemotherapy chemicals, slowly dripping down IV tubes, into central lines, embedded into tiny chests.

That night, alone on CK5, sleeping on the pullout chair beside Harry’s crib. That night I prayed as I have never prayed before.

In the dark, with only the blue light from the display of the IV monitor illuminating the room. I held Harry in my arms and I prayed. I wept and I prayed.

“God, I don’t know how to do this. Help me God. I don’t know how to do this. Please God, you have to help me do this”.

Unfocused at first, but then the prayer settled into a sort of mantra.

“Oh God, oh Jesus. Please carry me. Please hold me. I can carry my son. I know I can carry my son through this, but I need help. I need someone to carry me so I can carry my son.”

In my mind I saw the footsteps in the sand along the beach. From the famous poem, where the one set of footsteps represents the times when Jesus carried the petitioner. I saw us three walking along the beach. Me carrying Harry and Jesus carrying me.

“Please hold me Jesus. Please carry me, as you have carried so many others. Please carry me so that I can carry my son. Please help hold me up, please give me strength, so I have the strength to carry my son.”

And then.

“God, I don’t know how to do this. Show me the way God. Please show me the way. I will carry my son. I will hold my son. I can do that. I can hold him through this. But please hold me and guide my steps. Please show me the way.”

I stood holding Harry for at least an hour. Praying that same prayer over and over and over. The words spilling out of my mouth, rocking rhythmically back and forth with Harry pulled close to my chest. My eyes clenched shut, tears streaming down my face.

“Please hold me God. Please carry me God. Please hold me so I can hold up my son. Show me the way God. Please show me how to do this. I don’t know how to do this. Please show me the way.”

Eventually Harry fell deeply asleep, and I exhausted, put him gently in his crib, collapsed into the pull out chair-bed, and fell into a fitful and restless sleep.

That night I had a dream.

I saw a map on the wall. It was like an old-fashioned treasure map that you see in a children’s adventure movie. Aged and worn brown paper, the edges all black and burnt.

The top of the map was entitled, “Hendrik’s Journey”.

On the left side of the map was an ‘X’, a marking of “You are here”. On the far right side of the map was our destination, marked with the words, “Harry is healed”. Vast, open, empty brown space stretched in between, in between our start and our destination. We were four little figures on the map. In the dream we started walking, little figures moving along the brown parchment, as we walked obstacles appeared before us. Obstacles for us to tackle. We were followed by our path, marked out behind us by a dotted black trail.

I was being shown how to walk the journey, from here to the place where ‘Harry is healed’. One day at a time. We would face each obstacle as it came, we would deal with each one in turn, but we would never lose sight of where we were going. No matter what mountain or stream appeared in our path. We would keep our sights trained on our destination, “Harry is healed”. Step-by-step we were going to get there. There was no other alternative destination. No other place to go. The path would be revealed as we journeyed, but the destination was ever-clear. We were going to the place where “Harry is Healed”.

I woke up in the morning and remembered the dream. I knew in an instant. This is how you’ll do it. This is how you will walk Harry’s journey. I knew exactly how to do this. I had just done this. Suddenly, it felt like, this is the whole reason why I did my doctoral thesis. So I would know how to do this. So I would know how to walk this journey with my son.

When Harry was born I knew that I had to finish my doctoral thesis by December 31, 2007. I had to have my thesis defense before Christmas and have the final draft of the thesis submitted for binding to the university before the final cut-off date in late December. I had no idea how I was going to do it. I simply set in my mind that I was going to defend in December. I would not think about how much I had to do, about how I was going to get it done. I simply set the destination and refused to let any other thought enter my head than that I would defend my thesis in December.

And then I focused, day-by-day. Each day, I worked a little bit. I never let myself think too far ahead, I focused on the day. If I thought too much about how much work I had to do with a newborn and a three-and-a-half year old to manage I would become paralyzed with fear. So I didn’t think about it. I put my head down, literally and figuratively, and worked four or six hours each day, during naps, once the kids were in bed. Slowly, I chipped away at it. When anyone asked, especially when a committee member asked, I insisted, I was going to defend in December, if not earlier. And I did it. I defended on Tuesday December 18th and submitted my thesis for binding a whole day early, on Thursday December 20th.

That honestly felt like the whole reason why I had toiled for eight years to finish my doctoral thesis. I felt like, if I never, ever, use the damn thing, it will have been worth it just to learn this lesson. That one lesson about how to accomplish the impossible. Set the goal, never let it out of your sight, and then just walk one day at a time to get there.

I remember telling Henry later that day that I now knew how we would do this. We would call it ‘Hendrik’s Journey” just like in my dream and we would walk it together, one day at a time.

And so that is how ‘Hendrik’s Journey’ officially began.

Our House on French CBC

2010-02-05T09:23:00.007-06:00

Here is a link to a video clip that French CBC / Radio Canada did at our house last friday (January 29th) - they were looking for french speaking renovators (which our renovation company "Make it Home" happens to be) to talk about people finishing up renovations for the government HRTC (Home Renovation Tax Credit) which expired February 1, 2010.

So you can get a sense of what the house is starting to look like ... it starts with Mitch putting up a cabinet in our bathroom and then shows a lot of our main floor.

http://www.radio-canada.ca/regions/Manitoba/emissions/emission_tele.asp?pk=87

(Sorry you have to cut and paste this link - for some reason Blogger won't show the link when I try to insert it as an actual hyperlink in the text ... AND you might have to use the calendar on the left of the page to go to Jan 29th - we are at 6:01 in the broadcast ... hope it works!).

Peace,
Cynthia

p.s. I look terrible - I was at the house cleaning so we could move in the next day and they had told us it was just Radio Canada - so I didn't worry about even brushing my hair ... then they show up with a TV camera and decide to do the piece also for French CBC TV!

18 Months

2010-02-03T22:45:00.002-06:00

It is officially now 18 months since Harry passed over.

Today I feel ... acceptance.

There is still a jagged scar, which I will have for life, where the huge, gaping hole that ripped open in my heart when Harry passed away is healing over.

Yes, my heart is mending - but it will never be the same.

Yes, I am learning how to live without my wee Prince Harry, our Huggypet, our Hares-y-Bares-y.

Yes, today I am experiencing happiness, joy over being back in our home, anticipation over Sebastien's upcoming birth, loving having Lydia home for lunch and our play time together after school (we played Barbies ...).

But every day there is also a thread of sadness. Still missing Harry every day.

Mummy loves you my sweet Prince.

Love,
Cynthia

On the Breathe

2010-02-02T10:25:00.002-06:00

This is a poem I wrote in November about Harry.

On the Breathe

On the breathe he came in
- in a rush of water.

On the breathe he left
- in a rush of water.

In between he breathed in pure love,
harmony, happiness, and joy.

Can you feel the
wind of his breathe on
your cheek?

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Love,
Cynthia

Copyright 2010 Cynthia Neudoerffer

Home Sweet Home

2010-02-01T08:56:00.003-06:00

We are HOME!

We slept in our house for the first time in nearly 5 months last night. It has been a long haul, but we are HOME. I am sitting in a comfy chair in the 'sun room' area of the kitchen aka 'the love room' according to Lydia and typing away in my laptop - wirelessly connected to the internet. Ah, life is good.

The renovation is still not finished - they still have a couple of weeks of work. The front porch and the exterior won't be finished until spring, we don't have kitchen counter tops, a kitchen sink, a bathroom sink, the tiling still needs to be finished in the bathroom (requires the bathroom sink), as does the tiling to put in our washer and dryer ... our microwave oven isn't in yet BUT enough is done that we could move back home! We have 2 working toilets and one sink and the bathtub does work and our bedrooms are pretty much done (just need closet doors in Lydia and Sebastien's rooms).

But we are home, I can FINALLY begin nesting and stop spending 3 hours of my day commuting! Lydia can walk to school, come home for lunch and play with her friends! We actually had time to finish home reading and do some music practice this morning before school!

What a big day for Lydia today. She proudly set off (on time!!) BY HERSELF for the first time to walk to school (granted she only has to walk across the street and their are patrols at the corner, but hey, it is a big deal to a six year old).

I gave her a big hug and kiss on her way out the door and she reminded me, "Don't come and get me for lunch, I'll come home all by myself". She walked so proudly across the street by herself, only looking back home once she was walking up the front steps of the school.

It feels sooooooo good to be home. As Lydia reported on our way downstairs last night, "the stairs still creak in all the same places, but everything is just so much nicer!". It is kind of surreal - it definitely is our house, but parts are so different. I adore my kitchen / love room. Somehow our house feels twice as big, even though the square footage hasn't changed at all. Amazing what improving the flow in a house can do.

Well, Lydia will be home for lunch in 30 minutes, I'm off to vacuum the attic floor ...

Love,
Cynthia

Nicknames

2010-01-28T11:55:00.004-06:00

When I was pregnant with both Lydia and Harry we didn't know either of their sex, so each of them had a "womb name" that we called them before they were born. Lydia's was "Little Foot" - because she was so active, we'd always see these feet sticking out and we'd say, "Oh there's a little foot", which morphed into "Little Foot" as her womb name. I remember when I first held her right after she was born, I said over and over, "Hello Little Foot!" and then we thought to check her sex and suddenly she was, "Lydia".

Lydia came up with Harry's womb name. One day at breakfast she just decided he needed a womb name and she declared it should be "Huggypet", which we loved and it stuck and became one of our favourite nicknames for Harry (along with Hares-y-bares-y-boinga-boy).

This time around, we told Lydia on a friday that I was pregnant and found out on the following Monday that he was a boy. Lydia suggested a womb name, "cutie pie" but it has not stuck. It is interesting to me, knowing that Sebastien is a boy and so clearly knowing that this is his name, we don't call him by his womb name at all - he is Sebastien to us.

Much more so than with Lydia or Harry, Sebastien seems so real and a part of our family already. Maybe because this is our third child and we know so much more what to expect? We feel so clearly that we already know and love him. Maybe it is just because of the age that Lydia is at, and the fact that she talks about her brothers - both Harry and Sebastien - every day - but he feels more real to me than the other two did in utero.

True to form, Lydia has already come up with several nicknames for Sebastien - all three of which I think will stick after he is born - "Basji", "Sebasji" and the more playful "Basji-Boogles".

On the pregnancy side, I continue to feel great - I wish everyone could have such a wonderful pregnancy! And Basji is very good. He is very much like Harry in the womb - gently active. When I am busy he sleeps and he is most active first thing in the morning and between 10-11 pm at night. I hope this doesn't mean that he is going to be a great sleeper only as long as someone is holding him and walking around! Every now and then I am overwhelmed with fear that he will get sick just like Harry and we will have to do the whole thing all over again - but I try to pretty quickly quell that fear as understandable but purely irrational.

Lydia said an interesting thing this morning when she and I were cuddling in bed before getting up. She declared that "Basji is going to be the best little brother ever". Then she quickly corrected herself, "Well, Harry is a best little brother too, but Basji is going to stay with us in his little overcoat a lot longer than Harry did, so I will get to do more with him".

That is one way we have talked about Harry that really has stuck with Lydia - that our bodies are really just like little overcoats that our souls, our true selves, wear. That each of us are "souls in little overcoats" and that when we die we take off our overcoat, but our true self, that which makes us 'us' never dies and goes back to heaven. Lydia will often talk about Harry in terms of, "remember when Harry was with us in his little overcoat" ...

Lydia makes me so aware of how trusting kids are of their parents when they are young. She was unable to get very excited about Sebastien until one day her friend Svava bluntly asked, "Is Sebastien going to die like Harry did?" and Lydia quickly piped in, "Yes, is he?" I could feel that she was having that fear but didn't know how to express it to me and that she was relieved when Svava finally said out loud what she could not bring herself to voice - it just took Svava to blurt it out for her and for me to assure her that no he would not, to help her overcome that fear and start to get excited about Sebastien.

Though I of course will always have my fears, which I think is only natural, though I try to keep them well at bay. It is amazing to see the trust of little children. Ever since I said, "No that is not going to happen to Sebastien", Lydia has simply accepted that as true, since her Mommy said it, and now she trusts that and dreams and talks about the future with Sebastien. I feel such an overwhelming responsibility to her to make that true, and also saddened that gradually she will have to learn that Mummies and Daddies do not know everything and can't tell you exactly what is going to happen. Although, I do feel that Sebastien is not coming for the same experience as Harry and his life will be uniquely his own. In any case, it is lovely to watch the innocence of a child completely trusting what their parents tell them - and to know that Lydia feels so secure in her life that she can trust us in that complete way.

So every day we talk about life with her two brothers, Harry, no longer in his little overcoat, but still very much a part of our family and Sebastien whose arrival in ~ 2 months time we anticipate with such joy and excitement.

It is so good to have so much joy and excitement to carry us forward through February and March this year. I remember sitting and writing pretty much exactly a year ago about my fears of entering into February 2009. It is incredible the difference a year can make.

I remember in the early weeks after Harry had passed over, wishing so much I had a fast-foward button I could press. I knew the first year without him with us "in his little overcoat" was going to be so very hard and I wanted to just get to the one year mark, because I had an intuitive sense that somehow things would get easier after that. Of course, you can't fast forward grief. The only way to deal with it is to do the hard work of walking through it. Walking around it doesn't make it go away - just actually makes the obstacle bigger and more difficult to deal with.

But we have managed to walk through "our forest of grief" and we do seem to be through the worst to a place, a clearing, where the light can shine through brightly. The trees have thinned and the canopy is mostly open and we can breathe in the air and sunshine and feel joy and happiness again. That said, for those that wonder, I would never say that I am "over" my grief over Harry's illness and passing. That I have somehow "gotten over it".

I have said before and I maintain, this is not something one "gets over" and I would like people to know this and remember this if they either ever find themselves in this place or have a friend or family member in this place. I will never be "over" losing Harry. I have learned to live with his absence. Learned to live with the fact that we can't see him in his little overcoat again. Learned to live with the fact that I can't hold him and watch him grow. Learned to live with the ache and the grief and the loss. But it doesn't mean that any of it has gone away. I've just managed to integrate it into who I am now and I know how to be me and live with this within me.

I am forever changed and different from the experience of being Harry's mum, for the better I hope and believe! And I look forward to being Sebastien's mum and how that will change me - I hope more for the better yet again. It is the one thing I know for certain in life - that change is the only constant - and the sooner we come to know that and live with that expectation the easier life seems every day!

Love,
Cynthia

To Chris Grabowski

2010-01-14T10:28:00.002-06:00

This is a message to a Chris Grabowski --

I don't even know if you will be returning to this blog or not. But you had posted a comment a few days ago about the niece of a friend of yours, named Lydia, who has just been diagnosed with MRT of the kidney.

I am just wanting to pass on some information to you to pass on to Lydia's family. One of the best internet resources for MRT is the www.cbtrf.org. This is the web site for the Children's Brain Tumor Research Foundation. It is an organization founded Jeff and Katie Shaddix in honour and memory of their son Jonathan, who passed away from AT/RT (the brain tumor verson of rhabdoid cancer) in May of 2009. Jeff is trying to keep a database of all kids with AT/RT / MRT / extra-renal & non-CNS MRT (basically all other Rhabdoid cancers). The web site also hosts a number of discussion forums and is a really good place to go to find out about the latest research and treatment protocols for rhabdoid cancer.

The AT/RT / Rhabdoid community is a very supportive one - we have all been through the experience of our children receiveing this heart-wrenching diagnosis and dealt with the challenges of chemotherapy and, in some cases, radiation. I would strongly urge them to register on the site into the database. As Jeff is trying to gather a database all children with MRT / AT/RT in the world to be useful to research.

If Lydia's family has set up a caringbridge page or carepage or web page or blog - could you let me know - Jeff Shaddix at cbtrf.org would also like to know as he tries to keep track of all of our rhabdoid kids. I would like to follow her journey and know how she is doing so I can be specific in my prayers for her.

Peace,
Cynthia

December 3, 2009 - 16 months

2009-12-03T11:59:00.004-06:00

What is the measure of a life? By any measure can 16 months of life be construed to have been a long and frutiful life?

Sixteen months.

Harry lived for exactly 16 months.

As of today, he has been gone for exactly 16 months.

This feels like as significant an anniversary as the one-year mark of his passing.

From this day forward, every day is one more day longer than he lived with us. Now every day really takes us into what feels like uncharted waters. It really feels like we are being pushed or carried into that place where Harry never was, never will be.

I wish I could put into words how strange it is to have a young child die. How they can be here and then just not be here. How your life was one way one day and the very next it is completely different. How this little being was with us and an integral part of us and now that form of him is gone. I suppose it is not so different from when they are born, they are not here one day and the next they are. But one is marked by joy and the other by sorrow and all the world of difference that one little difference makes.

I close my eyes and I can remember the moments of his life. I cannot comprehend that that time, the time span of his life and the time I have lived since he passed over are the same. This time and that time, they are the same yet I cannot compare them. They have no meaning, no relation.

Most days I manage to move forward, focusing on optimism, and joy and hope for the future. But when I sit, sit and stop to think and feel. To remember what was and what never will be. It is so overwhelming, the grief is so overwhelming. That is how you manage to live with the grief. It is so overwhelming, you learn to only swim in it for a very small part of your day, and not even every day. Because you will drown otherwise. But the ocean is right there, and we live on the beach, and you can't avoid going in forever. But when you do, the riptide is fierce and it takes all of your strength, everything in you, to avoid its pull under.

It is so inadequate to say that I miss Harry. Missing cannot begin to describe the ache that I feel. The jagged crack in my heart where the love for him pours out. I am forever off balance. I am forever out of sorts. I have been knocked off my axis. Like Humpty-Dumpty, you cannot put me back together again.

Children's Brain Tumor Research Foundation

2009-12-01T12:22:00.003-06:00

Please take a minute and vote on Facebook for the CBTRF to receive $25K in research funds. This organization (CBTRF) was set up by a fellow Rhabdoid parent, Jeff Shaddix, in honour and memory of his beautiful son Jonathan, who joined Harry with the Angels in May 2009. Jonathan had AT/RT - which is the brain tumor version of Harry's Rhabdoid cancer and research into the AT/RT will also directly benefit all other Rhabdoid kids.

Thanks!
Cynthia

Here is the link to vote for CBTRF:

CLICK HERE TO VOTE FOR CBTRF to win a $25k Grant for Research!

Se-bas-tien

2009-11-30T13:27:00.001-06:00

Figured it out yet?

Sebastien ... Se - bas - tien ... our little "see bus ten" - the name we are sure Harry would choose for his little brother.

Love
Cynthia

Hint on Origin of Sebastien's Name

2009-11-27T14:17:00.004-06:00

Here is a hint to help figure out the origin of Sebastien's name.

One of Harry's most favourite things in the world was to wave at and visit the Number 10 bus - the city bus which passes our house roughly every 20 minutes to half an hour each day. It started when Harry and I would sit at the front window and watch for Daddy to come off the bus in the evening. Eventually, he could just sense the bus coming and before we could even see it he would be pointing to the front window to go and look. Sure enough, we'd go and there would be the bus turning onto our street off Evanson Street, two blocks east of us. He would bounce in my arms and wave at the bus. The bus loop where the bus turns around is also just two blocks away, in Aubrey Park - so when we were at the park, and a bus pulled into the bus turn around loop Harry would point to the bus and want to go and check it out. The bus drivers were always nice enough to let us come onto the bus and look around. Harry just loved that.

All of Harry's last summer we spent many afternoons sitting on our bench on our front porch and Harry would bounce and wave each time the bus came buy. It got so the drivers knew to look to our house and wave at the little boy sitting on his front stoop on the corner, or riding on the sidewalk on his trike (with his Mum dragging his IV pole / feeding pump and managing not to catch his feeding tube on anything). One of the ways we passed the long days in the hospital when Harry was going through chemotherapy was to sit and look out his window and wave at every bus that passed by. Even in his last few weeks, when he got sicker and sicker and weaker and weaker and was mostly just sleeping in my arms, I'd sit outside on the bench with Harry for hours and he would sleep, but when he heard the bus, even his last days, he would wake up and sit up and wave to the bus.

So, knowing how much he loved the bus, and specifically the number 10 bus, can you now guess at the meaning / relationship to Sebastien's name (and why we are spelling it sebastien not sebastian).

Love,
Cynthia

Baby Sebastien Photos

2009-11-25T11:55:00.004-06:00

Here is a link to a web album of some of our early ultrasound photos of Baby Sebastien. The first four were taken at 15 weeks and the last 2 at 20 weeks. I still have to scan some more of the 20 week pictures - but the hand and foot are two of the cutest. His profile at 15 weeks looks a lot like both Lydia and Harry's in the womb.

See if you can guess why we have chosen the name "Sebastien" for him - well *we* didn't choose it exactly - the hint is that this is the name we are sure Harry would choose for his little brother. Break it down and think about what Harry loved to do and it is obvious and cool!!!

Love,
Cynthia

Baby Sebastien Photos

Photos of our home renovation

2009-11-11T22:35:00.003-06:00

The below link should go to a Picasa web album showing picture of our home renovation.

Home Renovation

20-Week Ultrasound

2009-11-10T10:53:00.005-06:00

I had my 20-week ultrasound yesterday.

Our wee boy is very active and looks very healthy! The technician was so kind and said he looks very good, no reasons for concern and no reason to come back again for another ultrasound, unless my midwife decides otherwise. But she was so kind, knowing our history with Harry, she gave me her card and told me to give her a call and just come in and see her if I am feeling worried at all about the baby, and she'll take another look.

My triple-screen blood test came back negative! So that was very good news and means that no further testing is required. His spine looks great so no fears of spina bifida, and his risk for downs sydrome is way down. So good news on all fronts.

He was very cooperative for the tech - always shifting into exactly the position she wanted him in to be able to take a particular measurement or capture a particular view - something Mummy likes to hear ... very cooperative!!! We got lots of great shots of his hands - as he kept on waving at us, as if to say, "Hello Mummy, Hello Papa, see you in March!". Just like Harry and Lydia she said he has a lovely shaped head!

I am hoping to set up my printer / scanner tomorrow and if I can figure it all out, I'll try to scan and post some of our pictures from the ultrasound. To me, his little profile looks just like Lydia and Harry's did in-utero - so I am sure he is going to be yet another blond-haired, blue-eyed carbon-copy of his Dad - just like Harry and Lydia - ah well, that will at least mean he will be a cutie!

Having this baby feels like a radical act of hope. We could have given into fear and not have had another child, but living in hope is part of our promise to Harry. We are also lucky - given that Harry's cancer was sporadic and not genetic, we don't have to worry about another child developing this cancer - which parents of a child with an inherited or de novo mutation do - so that makes it easier for us. It *is* scary to move into the future in hope, nonetheless. Having once received devastating medical news, we know that it can happen. That makes every medical procedure we have to do with a child, Lydia or this baby, that much more stressful.

When Lydia had to go to the doctor's last December for her 5-year old check up, I made Henry come with me. It was the first time I was going back to the doctor's office since we had taken Harry that fateful day, February 22, 2008. Lydia was scared, so I had to massively fight back *my* fear to put on a brave face for her. But *inside* I was fighing back nausea like you wouldn't believe. Thank goodness the nurse, by chance, did not put us in the same patient room that we had been in with Harry when Dr. Van Rooyen had found his tumour. When Lydia had to lie down on the table and he did his routine check of her arms, legs, and core, including abdomen - Henry and I held onto each other's hand for dear life. I think the doctor could tell how scared we were, he kept talking the whole time. "Oh, yes, this feels fine, um, yes good, everything feels normal and healthy". I honestly nearly passed out with fear when he was feeling around her liver - even though I prod her often now and know she is fine - it was just so terrifying to have her checked out that first time. Henry said after the visit was all done, "No wonder you wanted me there, that was incredibly difficult, I had no idea just how stressful it would be!"

I have already warned Dr. Van Rooyen that I will be bringing this baby in every month for a well-baby check up for his first year at least, not on the usual 2-4-6 & 12 month schedule. Fortunately, he completely understands! Part of me will always wonder, "what if we had brought Harry in for a 9-month check up? Would we have found the cancer sooner? Would it have made a difference?" I try to be positive - "No, it wouldn't have made a difference. He just would have been a sick baby sooner". But sometimes despite my best efforts, that nagging voice pushes her way in, "Maybe if you hadn't been so focused on finishing your PhD in the fall of 2007 you would have noticed your son was starting to get sick." I really dislike that nagging voice and *really* try not to listen to her!

It also feels like a radical act of hope to talk about this baby's future with Lydia - which we do now daily. I will not let my life be shrouded in fear - but it is a conscious effort to stay positive and focused on the good each day. I try not to get too far ahead of myself and just focus on how wonderful today is - not to put off thoroughly enjoying the now and not to focus on too much on that which is unknown and unknowable. One of Harry's gifts was learning how to radically focus on the good and the gifts of the NOW - I will not squander these hard learned lessons!

On that note, have a wonderful day. If you are in western Canada - where we're experiencing an above normal temperature week - bask in the glory of the gift of the sunshine and warmth today! I know I will!

Peace and blessings,
Cynthia

One year three months

2009-11-03T12:35:00.002-06:00

It has been one year and three months today since Harry died.

Life with Harry seems like a dream. I look at his pictures on my office wall and I wonder to myself, "Is that really me? Was that my life? Did that really happen?" In many ways it feels like a lifetime ago. In one more month it will be a lifetime ago, Harry's lifetime ago. That seems so impossible to me, that in one months time he will have been gone for as long as he was here.

It is so strange. I will never forget him. He is still so much of a daily presence in our lives, and yet, his life seems like a dream that happened long ago.

A family friend asked me recently if being pregnant helped to ease the pain over the loss of Harry. Yes and no. It is wonderful to have something so hopeful to look forward to. I adore being pregnant. If I had known how much I was going to love it, I would have started much younger and have planned on at least 6 kids! I love watching my belly grow and feeling the baby's gentle kicks and flutters. I am now 20 weeks and half way through. I feel wonderful - just so content and happy to be growing this blessed child in my womb.

We love him so much already.

So, yes, in a way having something so exciting to look forward to helps me stay grounded in a place of joy and hope. Yet, no, too. Nothing can take the pain of losing Harry away. His absence will always be such an ovewhelming presence in our lives, I can't imagine anything easing the pain of his loss.

It *is* nice to have the baby to look forward to. I hear a baby cry in church and I cannot wait to comfort my crying son. To hold him and nurse him and take care of him. I feel so overwhelmingly blessed to be given the chance to welcome another child into our lives.

Lydia has overcome her initial anger at having another brother, "I don't need another brother she insisted, I already have one. I want a sister!" But, fortunately, the thrill of having another sibling has overtaken her initial reluctance and she already tells the baby daily how much she loves him. She is looking forward to being able to read him stories, playing with him, and helping me take care of him. She wants to share a room with him, too. Something she always wanted to do with Harry. We have started talking about what the baby will be like and do at different ages and what Lydia will do with him then. Lydia already anticipates that when he is five, he will chase her down the street when she goes to a friend's house, wanting to come too. And she tells me, "It's okay Mommy, I'll bring him with me to Eva's house, he'll be able to play there with us." She hopes that she can be his reading buddy, when he is in nursery and kindergarten and she is in grades 5 and 6.

I think once she was able to express her fears to me, "Will this brother die like Harry?" And I was able to reassure her as best as I could, "No, I don't think so sweetie. Harry's life was his own and this baby is coming for his own life and I think he is coming to be with us for a long time. Harry's cancer was so unique, it is just not something that will happen again," that she has been able to become excited about the baby.

I, of course, wish I could outright tell her with certainty, "No this baby won't die". I believe he is completely healthy and coming for a very different experience from Harry, but my crystal ball is as blurry as the next. And I can't bring myself to lie to Lydia. And I'd of course be lying to myself, if I said the fear hasn't crossed my mind, too. But I won't tell *that* to Lydia. And I cancel that fear and send it packing as soon as it emerges. I won't even entertain that thought.

I rub my belly and smile, and yet in the next instance look up and see Harry's smiling face shining down on me from my wall and a tear rolls down my cheek. How is it that we can hold two such opposed feelings in our hearts at once? But I guess that isn't true. It is one emotion, one and the same. It is love. I look at Harry and I feel such overwhelming love for him and it makes me cry. I rub my belly and I feel such overwhelming love for my baby and it makes me smile. I'm glad I can feel such overwhelming love for both of my boys. That the love for one in no way diminishes or changes the love for the other. They are unique and wonderful and good.

I like to imagine Harry and his little brother, talking in heaven. Or well, as Lydia describes it, the baby is in "waiting to be born Heaven, where she and Harry were before they were born and where they looked down at the party of possible parents from a balcony and choose Daddy and I" and that Harry visits him there. And Harry tells him all of the wonderful things to expect in our family. How much love there is waiting for him here. I always ask the baby to make sure he gets to know his brother well in heaven, since he won't get to know him here.

I wonder what I will tell the baby about Harry. He'll see his pictures and I am sure wonder and ask. But he'll know about Harry from the time he is born, because Lydia talks about Harry every day.

Harry and his brother and sister. Three kids. I never thought I'd have three kids, certainly not two boys. I always thought I'd have girls. Maybe it sounds weird that we aleady think of ourselves as a family of five (not four). I can't unmake Harry. He's not here, exactly, but he most certainly isn't 'gone' either. Oh, but I do wish I could talk to him. Hear him talk. Oh and what I would give to hold him again.

It scares me that life moves on and that we move on and keep going, because we have no choice but to do othersise. While Harry, Harry will always be that little boy who was with us for just 16 months and died of this ridiculously rare cancer. That is what I worry about now, the distance, the ever growing distance between Harry and where life is now and making sure I always have a way to cross that chasm to never lose touch or hold on Harry. On who he was and how wonderful those 16 months were with him.

On an entirely different note, our home renovations are coming along slowly but surely. The siding started going on yesterday and it promises to be a good week weather wise, so hopefully they'll get most of the exterior done now. We can't wait to move back home. As wonderful as it is to have a great place to stay. This experience is making us appreciate our home more than ever! I *really* will post pictures soon!

Love,
Cynthia

Packing Up Harry's Room

2009-10-16T12:34:00.002-05:00

Well, I have done it.

I spent the morning at the house and packed up Harry's room. So now it is just boxes that need to be put in the storage container. His crib, which needs to be taken down and stored too, and the rocking chair and little bookshelf.

And his dresser. Still didn't know quite what to do with his clothes. I am very tempted to just leave them in his dresser and cover it with plastic and leave it in the room and deal with when we move back in. I guess I'll decide with Henry on the weekend.

The actual doing of it wasn't nearly so bad as the anticipation and planning of the activity. I find that usually is the case - the anticipation of an experience without Harry tends to be worse than the actual living through the experience.

I find that my usual method of having a big cry as I anticipate and prepare and then writing about it on the blog - which is somehow so cathartic for me - usually translates into the actual event not being as bad as I had imagined. Doesn't mean it is easy, just that it is never quite as bad as I manage to paint it in my imagination.

Now our house is really empty. I swear I am never moving again once this renovation is finished! I took some pictures this morning and will post soon.

Love,
Cynthia

Harry's Room

2009-10-14T09:52:00.002-05:00

Thanks for the suggestions. I know I should probably buy a nice box of some sorts for the clothes of Harry's I want to keep.

One of the challenges is that I have to figure out which of his clothes I am okay with the new baby wearing and which ones are just "too Harry" for anyone else to wear. I just don't feel ready to make those decisions. Yet that is usually the way isn't it - life thrusts us into situations where we have to make decisions before we are ready.

I'm debating just pushing his dresser into the middle of his room and wrapping it well in plastic and not doing anything until the reno is over. I know it just isn't realistic to figure on buying the baby an entirely new wardrobe - I'm already too much of a Winnipegger to go to that sort of extravagence! I know Harry would want his little brother to wear some of his clothes. I think I'll be okay with the baby clothes. It is going to be the outfits he wore post-diagnosis and especially the ones in the months just before he passed over. I think those ones will just hold too much of Harry's energy for anyone else to wear.

So I know at some point I have to sort through all his clothes and decide what to save as special and what to give to the baby. But I just don't want to do that right now! Maybe I'll start with everything else in his room and leave the dresser till the last and in the process it will come to me what to do.

Siobahn - we did receive the lovely book - thank you so much. It was so incredibly kind of you to think to buy it and send it. I have been so bad at sending emails ever since Harry was diagnosed. I read them, but take forever to respond!

Peace,
Cynthia

Packing Up Harry's Room

2009-10-13T12:28:00.002-05:00

I have to pack up Harry's Room.

I don't know how to do this.

We are in the middle of a major renovation of our house - so major that three weeks ago we moved out into a friend's house. (Aside: We were super fortunate that this friend / former colleague of Henry's has moved back to the US to take up a tenure track position in Denver and his beautifully renovated house on the river here in Winnipeg has not yet sold. He is kindly letting us stay here during our renovations. If anyone is looking to buy a beautiful river lot in Winnipeg drop us a line!!!)

Our main floor is basically gutted, as are our bathroom, watercloset, linen closet & half of the back bedroom on the second floor and the hallway / stairwell wall between the second and third floors of our house. We have moved everything out of our house and put it in storage, either in the basement or in a storage container. Every single room is now packed up and basically empty, or with the remaining furniture pushed into the middle of the room and covered in tarps.

Except Harry's room.

I have not yet had the courage to face packing up Harry's room.

I thought it would be easier to do this way. That is, since we are packing up everything else it wouldn't feel like such an individual or final act. We're not just packing up Harry's room, we're packing up everything in the house.

But it isn't the same. It feels incredibly final and I just don't want to do it.

We'll unpack everything else. In a few months, everything else will come out of the boxes and be put back into its place where ever it belongs in the house.

Except for Harry's things. Harry's room will never again be Harry's room after the renovations. It's going to be our office. We're giving the baby our room and we're moving to the back bedroom, because I want the baby to have his own space, not his brother's space. But once I pack these things up, they will never be put out in the same space. This is a letting go that feels so overwhelming, it almost feels like a betrayal to Harry. Though I know in my heart it isn't. He isn't in that room anymore. He is everywhere in the universe and always in our hearts. But still it is so final a thing to pack up his room.

I don't want to touch it.

I tried yesterday afternoon.

Henry and I spent a few hours in the house, finally finishing up cleaning out the last bits in our room. I still had some time before we had to go back to Kingston Row (where we're staying) to prepare for Thanksgiving Dinner. I went into Harry's room and sat in my rocking chair, surveyed the room, trying to decide where to start, and I couldn't do it.

I sat and held onto his baby blanket, cuddled on my shoulder just as I had held him in it so many days and nights, and rocked in the chair and cried and cried and cried. I cried so hard I could barely breathe.

I don't want to change a thing about his room.

I don't want to take down his crib. I don't want to pack his books off his shelf. I don't want to pack away his shoes - his yellow crocks and his brown squeekers. I have so many memories of sitting for hours nursing him in that chair. I don't want to not be able to sit in that chair and remember him there.

The chair is in front of the window and a toy wooden block train sits on the window ledge. Sometimes, even in the middle of the night, Harry would finish nursing and instead of falling back to sleep on my shoulder he would reach over my shoulder for one of the train pieces. So I would sit with him, at 3:00 am and we'd play with the train in my lap and he'd laugh and laugh. Until he would get sleepy again, start to lose interest in the toy, and I could cuddle him in again, resting his head on my shoulder, one of the blocks from the train clutched in his chubby hand. We'd rock, I'd kiss his soft head and he'd drift off. I'd eventually pull the toy from his relaxed grasp and gently place him back into his crib.

Will I lose those memories if I can't sit in his room and remember them?

I most certainly don't know what to do with his clothes. I am afraid to open his closet and take out his clothes and pack them up.

They still smell like Harry. Even though I have washed all of them since he passed over, they still smell like him. Especially in his last few weeks he had a really distinct smell about him, and that smell still lingers strongly on his clothes. When I need to I can go into his room, open his closet, take out one of my favourites of his outfits, inhale deeply and still smell him.

I am terrified that if I pack up everyting and put it in a box it will lose its smell, his wonderful Harry smell. I am not ready to let that go.

So I am not sure what to do. I need to pack up his room, so they can put in the new wndows and paint the walls. But I can't touch his clothes. I don't want to just leave them in his room, because they'll get too dusty, and have to be washed, and then they might not smell right anymore. But I am not ready to move his things out of his dresser. But I have to decide soon, the decision can't wait forever.

I guess I just have to sit and still my mind and listen to my heart. It hasn't led me wrong so far where Harry is concerned. I have to trust that it will lead me to the right choice in this case too. I have to figure out some sort of compromise. Does anyone know a way to capture and bottle a smell? Not the essence of a flower or plant, but just a smell left clinging to clothes? I wish I knew how.

Maybe one day I won't need the smell of Harry. But I am not there now. Right now I need that smell to still have my connection to him. I try to always think, "what would Harry want me to do?" "What would honour him in the best way?" But I am just not sure.

But somehow this week, I have to figure this out and figure out how to do this.

Love,
Cynthia

Laundry

2009-10-06T15:55:00.003-05:00

I was doing laundry this afternoon and it reminded me of Harry.

Harry loved to help me do laundry.

Up until a few weeks ago, when it got torn off as part of the massive home renovation we are currently enduring (!), our laundry machines were located in a little room at the back of our house off the kitchen, which Lydia and I called our, "Laundry Room / Play Room". It was about 10 x 10 and housed the washer and dryer, 2 toy storage cupboards, a children's set of table and 2 chairs, and a play carpet. This room was Lydia and Harry's playroom (one of 2 on the main floor, amazing how much of one's house gets devoted to our kids!).

Harry liked to stand in front of the washer door (front loader) and help me throw in the clothes. I can still see him standing there at my feet, holding onto the door frame with his right hand for balance and using his left hand to grab clothes out of the laundry basket and throw them into the washer. With each turn towards me to reach into the basket, he would give me a huge grin and laugh - it was such a fun game to him to see the clothes disappear into the washer. When the load was done, he liked to help pull the wet clothes out and then repeat the same process for putting them into the dryer.

I miss having Harry help me with laundry. I miss his grin and his laugh. And how much he just loved to play in this way, not knowing he was really being a great help. I miss these little things that we used to do together. Those special little moments in a day between a mother and her wee child, those precious moments of togetherness. I really miss those.

After Harry died, Lydia seemed to stop playing in the laundry room playroom. I don't know if it was just that the nature of her play has changed - being more into dolls and barbies - which are in her room, or if it is because of memories of playing with Harry so much in that space.

But it was interesting that she did comment to me the other day that, "Harry and I played in that room and did laundry there, but the new baby won't even know that our house had that room".

It is true, the new baby won't know what our house looked like before the renovations, or will only from pictures. He'll also only know his big brother from pictures. And from the stories I tell him. I will be sure to tell him how much his big brother liked to help me with laundry.

Love,
Cynthia

No Amnio

2009-10-06T10:18:00.002-05:00

For now, at least, we have decided against doing an amnio.

I know a number of women who have had amnios and experienced no complications. But I also know at least one woman who miscarried a healthy baby after an amnio....

For me, it just doesn't feel like the right thing to do. And if there is one thing I learned from my experience with Harry it is that I have a pretty well-honed gut instinct where my kids are concerned. (Ah, if only I'd had that same gut instinct when it came to picking dates in my youth!! - At least that same instinct served me very well where Henry was concerned, so can't complain too much. For those who don't know, I knew I was going to marry Henry 2 days after our first date.)

I will do the standard triple-screen blood test this week and I suppose if some alarm bells are raised from that we'll reconsider our decision, but I won't do an amnio 'just to check' - only if there is some reason to really suspect a problem.

And even then, I am not sure I want to know. I know for a lot of families the logic behind having an amnio is that 'they want to be prepared' to know what to expect, when the baby arrives - especially to be able to prepare if you know you are going to have a child with certain physical or developmental challenges.

I actually don't want to know. We cling to any thread of certainty in our world of uncertainty, no matter how precarious.

I guess it comes from actually *knowing* what it feels like to be told your child is terminally ill that I don't think you can actually prepare for that moment.

Would it have allowed us to somehow 'prepare' knowing, five months in advance, that Harry was going to develop cancer?

No. Absolutely no.

All that would have happened was that we would have been miserable and depressed and scared and full of fear for those five months waiting for the bomb to drop.

Instead, life with Harry was glorious right up until the day we took him to the hospital and the nightmare started. But even then, once the dust settled, life with Harry was glorious right up until he drew his last breath.

So for me, I just want to revel in the joy of expecting this new little life to come into our family.

I once again choose optimism, hope, faith, believing in the good, believing that this little one has chosen to come to us at this time and we'll welcome him with love however he comes.

But you know, going through this thought and decision process has once again reminded me just how intensely personal this decision is. I would never, ever, impose my decision-making process or outcome on another woman. Going through it, it becomes so radically clear that what is the right choice for one woman will NOT be the right choice for another. So it absolutely reaffirms for me my unwavering support for a woman's absolute right to have complete control over her reproductive choices, even if another woman might make a choice I was not comfortable with. I might never have an anmio or an abortion, but I will fight to the death to ensure that other women have the right to freely make these choices. No one should ever be allowed to make these decisions for another woman, it is just too personal and the consequences too life-altering for another person to make this decision for a woman.

So for now, no amnio.

Peace out,
Cynthia

Amnio or no Amnio

2009-10-02T11:46:00.003-05:00

We have a big decision to make this week - do we want to do an Amnio or not?

Sometimes I just wish we didn't have so many choices in our lives - it just seems to complicate life needlessly!

Given the fact that I am a 'geriatric' Mum - as the medical establishment so kindly labels me, I am automatically offered a number of tests for the baby. Hence our early ultrasound - given my age we were sent directly to Fetal Assessment - no use messing around with the standard ultrasound for us 'geriatric' Mums! So far the baby looks great - he was 'hopping' around in there, to use the ultrasound techs words.

Unfortunately, we found that I am a week further along than originally thought (this is a good thing, otherwise my due date was April 2 and just a wee bit too close to Harry's birthday for comfort!!!). But this meant that we were too late (had to be between 11 - end of 13 weeks) to look at the fluid in the back of the baby's neck.

Of course it goes without saying we'd love to be re-assured that this baby is 100% healthy. Except for our ages, mine in particular, we have no other risk factors for the baby.

One of our biggest concerns, of course, was Harry's cancer. There *has* been a genetic link found to Harry's cancer. There is one doctor, a Dr. Biegel at Children's Hospital of Philadelphia (CHOP), who is the foremost expert in the United States on the biological/genetic aspect of Rhabdoid cancers. This type of tumor is known to be caused by deletion of or damage to a gene (INI1) on the 22nd chromosome that effectively plays the role of a "tumor suppressor". Without getting too technical, it is usually a mismatched amino acid base pair (A, T, G, C) or an inadvertent STOP codon which essentially messes up the order of the amino acids that create the DNA strand. There are four possible genetic links with Rhaboid cancer (now cancers that do not carry the genetic deletion or damage to INI1 on chromosome 22 are no longer considered true Rhabdoid cancers):

BEST CASE: Localized or Sporadic - The deletion of the gene on the 22nd chromosome only presents in the tumor tissue. This means that if the primary tumor can be removed and/or killed, the chances of recurrence are smaller than in the next two cases. This is called a sporadic mutation - the mutation only occurred in the tumor location.

BAD CASE: a) De novo b) mosaicism (worse than de novo) - The deletion of the gene on the 22nd chromosome presents in all bodily tissue (tumor, blood, ect.), which is called a germline mutation. This is referred to as "Rhabdoid Predisposition Syndrome - RPS" and basically means that the child will be predisposed to rhabdoid tumors throughout his/her life, and is much more likely to experience a recurrence due to the fact that every cell in the body has the mutation. This can also include recurrences outside of the primary tumor location (kidneys, lungs, other areas of the CNS, etc.). However, in a De novo mutation, the gene deletion does not exist in either parent. Rather, the mutation occured very early in embryonic development, or in some cases, was there prior to conception (a mutation in a single or a few sperm or egg cells), which is referred to as mosaicism. Due to mosaicism, any future children have approximately a 1%-2% chance of receiving the gene deletion.

WORST CASE: Inherited germline - For the AT/RT / Rhabdoid patient, there is no difference between this case and the one above...they both mean that every cell contains the deletion and recurrence is likely. This case, however, means that either the mother or father also have the deletion in their constitutional (e.g. blood) cells, and directly passed this genetic predisposition down to their child. This scenario is the least likely, since most people with this gene deletion die in childhood, never bearing children. There are, however, people who have lived perfectly normal lives as carriers of this mutation, though they are rare. I (Jeff Shaddix) know of three current cases of AT/RT where the mutation was passed directly from one of the parents. The ramifications of this scenario are much greater, because it can effect siblings, nieces, nephews, etc., as this mutation could run in the family. Other children from this couple have roughly a 50% chance of having Rhabdoid predisposition, which could lead to childhood death.

(Thanks to Jeff Shaddix from www.cbtrf.org and the parent discussion forum for the above information on the different genetic options of the genetic mutation).

Harry's tumor biopsy sample was sent to Dr. Biegel at CHOP for genetic testing back in March / April 2008. Very fortunately, his tumor was found to be the first case - localized or sporadic - only 50% of his tumor sample contained the mutation and 50% was healthy cells. This means that he did not carry the genetic mutation from birth and neither Henry nor I would be carriers.

If his tumor had been inherited - either de novo or via mosaicism - then the risk of other siblings getting this cancer would be significant 1 - 2% in terms of a de novo mutation and possibly higher in a mosaicism (there would be no way of telling what % of a parents sperm or eggs carried the mutation) and as high as 50% if one parent were a carrier. As unbelievable as it may seem for such a rare cancer, there are a number of families that have had 2 children die from this cancer. But in all those cases the cancer was one of the inherited varieties.

The risk for us is still non-zero but very, very, very small - something like 0.00001 x 0.00001.

We just have a lot of faith that this baby is coming for a very different life experience than Harry and so we are not concerned. So there is no need to test for Harry's cancer - because it wasn't inherited.

Had we had an amnio with Harry it would have told us he was a completely healthy baby - it couldn't of told us that when he was 10 months old he'd be diagnosed with a lethal cancer.

The risks with an amnio also just seem so high. There is a 1 in 200 chance of miscarrying a perfectly healthy baby. These may sound like reasonable odds to some, but when you have had the 1 in ten million thing happen to you, 1 in 200 isn't particularly reassuring! We would be devastated to miscarry a perfectly healthy baby boy.

Sorry to all my male friends and family out there - but I have to believe that if men had babies we'd have developed a better genetic testing procedure than an amnio.

I mean really, can you imagine telling a perfectly healthy adult:

"We want perform a medical test on you, just to verify that you are healthy, because you have certain risk factors for disease. No, we have no real reason to believe that you are sick, just your age, but we do this test all the time. And, oh, by-the-way, one wee thing, there is a 1 in 200 chance that you will die as a direct result of this test."

Who in there right mind would subject themselves to this test? I'd say no-one. But yet, we ask mothers and fathers to make this decision for their children. Crazy.

We'll do the standard blood testing. But as you can maybe guess, we are really leaning against doing an amnio. I hate the thought of invading the baby's space with a needle. I'm not even sure what we'd do with the information when we got it. By the time we got all of the relevant information I would be at least 20 weeks and that seems way, way, way too late to terminate a pregnancy, at least for me, personally.

And also, I look at it this way, I would never, ever, ever for a moment give back the 16 months we had with Harry. I would do it all over again with him if I had to. I would never ever say I wish he hadn't been born to spare us the grief, my life has been so forever and deeply enriched by being his Mum.

So I guess I look at the whole amnio thing as a relic of our societies' desire to control that which really is not controllable. Henry and I have always maintained, that anyone who wants certainty in life should not become parents - it is the ultimate act of surrender to the unknown!!!

I have become way more spiritual through my experience with Harry (I specifically do not say 'religious' because I associate that with an institutionalized view of faith and most institutions would kick me out and label me a heretic for my spiritual beliefs!). And I really believe that we come into this life for a particular set of experiences. Harry's life and life experience was uniquely his own. His little brother is not coming to live OR re-live his brother's life - but coming for his own unique life experience.

I just have faith that this little guy is coming to be healthy and be with us for a long time. I don't want him surrounded by a whole lot of negative thoughts and fears either. I just want him bathed in loving, positive thoughts and feelings. I know he already knows how much his family loves him, even though we haven't even met him yet.

So ... we're leaning against the amnio ... but we still have a week or so to finally decide ....

Peace out,
Cynthia

A Baby Brother for Lydia and Angel Harry

2009-09-30T13:34:00.002-05:00

Henry and I have wonderful news to share with all of you who have been following our family on 'Harry's Journey'.

We are thrilled to let all of you know that I am 15 weeks pregnant with a baby boy, due March 24th 2010. We decided we wanted to know whether we were having a boy or girl - we've had enough surprises to last a lifetime these past 1.5 years, and for all three of us it was important to know what to expect in March.

Lydia is slowly coming around to the idea of another brother. She *really* wants a little sister, so was pretty disappointed to find out the baby is a boy. But now she has 5 months to adjust to that fact!

Henry and I are both a bit shocked - I was sure the baby was a girl, because so far my pregnancy has been much more like Lydia's than Harry's.

I'll try to scan our first ultrasound pictures, which we got on Monday. We got a great shot of his profile and to me he looks exactly like Lydia and Harry - same de Jong nose and same mouth as his big brother and sister. I am sure we'll get another blond haired, blue/green eyed clone of Henry!!!

Love,
Cynthia

Cancer Mom

2009-09-21T14:56:00.002-05:00

This is a poem another Cancer Mom posted on her blog yesterday. Her son Victor has been fighting neuroblastoma for *five* years, since he was a wee 7 month old baby. Victor's cancer has relapsed severely and his family is considering their options. So please say a prayer for a little boy named Victor, who just wants to go to Kindergarten this year.

This poem breaks my heart but also rings so very, very true, especially the part about being able to direct a wagon and an IV pole (and 5 or 6 different lines of tubes running from a variety of machines on said IV pole to a port directly into your child's chest) to a playroom without hitting anything ...

Cancer MOMS

I belong to a special group of women
My friends and I have an amazing bond.
We never wanted to be in this group,
Yet we are in, for life.
Maybe we have met, maybe we haven’t,
Yet our love for each other is boundless.
We know the pain the other one feels,
And we share our victories small or huge.
Words like chemo, IV, Zofran , bald heads
Are always parts of our conversations,
As well as roidrage, tears, and meltdowns…
We always know where the closest puke bucket is ,
We can hold it in one hand and if necessary,
Swallow the sandwich the other hand was holding.
We can drive to the hospital ,
Park in the dark parking garage
Make our way thru the halls of the hospital
And to the appropriate floor,
Settle in a room, turn the TV on,
Give instructions to the head nurse,
Silence loud beeping IV pumps,
Direct a wagon AND an IV pole
To the playroom without hitting anything
Make our way back to the correct room
And all this, mind you,
With our eyes closed at any given time.
We know how to draw blood from lines
Sticking out of little kids chests.
We can hold them down with one hand ,
While a nasogastric tube is inserted in their little nose,
And be on the phone with their dads at the same time.
We can live for days on hospital food,
And on maybe only one meal a day .
We know the names of up to 20 different drugs ,
Their purpose, dosage and time to be taken.
We are always on call, 24 hours a day ,
Seven days a week.
We are used to not always looking our best,
Hard to do with only a few hours of sleep .
Make up , hair styling, skirts are words of the past .
We have become addicted to texting ,
hospital, clinic, home, wherever…
We talk sometimes at all hours of the night ,
We know we can count on someone to be up.
Then for one of us , the world stops .
She has to walk away, broken.
This job is over .
The job is over, but the fight is on.
Remember , I said we were in this forever.
We are friends, sisters, temporary nurses,
We are each others rock, each others punching bag,
We listen , we vent , we cry , we laugh together .
We share our lives and our deaths
We share our pain and our victories.
We are strong, but not by choice ,
Sometimes we win , sometimes we lose,
But never are we defeated .
We are not nurses
We are not doctors,
We are cancer moms…

Peace,
Cynthia

Surviving the First Year

2009-08-18T21:07:00.002-05:00

We have survived the first year of life without our Angel Harry here with us in his 'little overcoat'.

I remember last year at this time having such mixed feelings over the passage of time. On the one hand I wanted time to stop. I resented every second that ticked away and took us further away from the time when Harry was with us. I wanted to turn back the clock and forever stay on August 2nd. Even if that meant living with such a sick Harry, I just wanted him here with me to hold and cuddle and laugh with, bounce with, point to the buses with, live with. Part of me just didn't want to face living without my Harry.

Part of me still doesn't.

Though, fortunately, the rest of me, is able to reason with that part of me, "That is ridiculous, you are here and Harry is there (where ever 'there' is), you have to just make the best of it. No point in moping - you can't change what has past. Harry was here but now Harry is gone, and no amount of wishing will every bring him back. You have a choice, you can mope and be miserable or you can honour Harry and what he taught you and focus on the good things in life and finding the joy in every day".

The lecture works better on some days than on others.

Back to time. On the other hand, last year, I wanted time to fast forward through one year. I just wanted to get through the whole, long, painful first year without Harry. Fast forward through it and get to year two. I just had a sense that things would feel sufficiently different in a year - the pain would not cut so raw.

And I was right.

We have lived through the year of hard firsts, all of the holidays without Harry. Taking Lydia to school, dance class, Kindermusik, swimming, hockey and skating, doing all of those things, seeing all the families with their children, and missing Harry in each moment. We have done the hard work of putting away all of Harry's things. His car seat is washed and in the attic. His booster seat washed and in the basement. His toys, the real baby ones, washed and put away. His coats gone from the hallway. His hats and mitts moved out of the basket in the front hall. His shoes in a basket in his room. His trike and red cars washed and put away. His medicines gone from the kitchen. His towel no longer hangs in the bathroom. His toothbrush is gone from the toothbrush holder. The baby gate is gone from the top of the stairs. All of the diaper changing stations have been long cleaned up and put away and his extra diapers and baby food given away. His room is cleaned up, though still his room, and still set up for him. I'm not ready to change that yet.

Some of those things we did very quickly right after he passed over. Before I could think about it too much I remember taking his car seat out of the car and washing it. Same with his booster seat. A part of me could pretend he had merely grown out of them and we were washing them up and putting them away because he was done with them. Well, he was done with them.

Other things took months to work up the strength to face.

But now, much of the 'Harry-i-ness' has been cleaned up and organized out of our house. Our house is neat and organized. It is the house of an only child - where the parent's stuff rules instead of being over run with kids' stuff. It is hollow and empty in that way.

All that said, I suppose I am at peace with Harry's life. I have come to terms with his short life. I have worked out a narrative of truth that comforts me and gives me hope and strength. But I will *Never* *Ever* *Ever* 'get over' Harry's death.

I suppose that is one thing I have learned in this past year. About mid-way through I suddenly realized that, "I will never get over this. This is not something you 'get over'. This is a pain you learn to live with, to take into your heart and hold and surround, but it will never, ever, go away."

I actually found that realization very freeing.

Once I realized this feeling, this dull ache of pain of missing Harry would never go away, I was free to stop waiting for it to go and able to just accept its presence in my life.

That is what I have now, sixteen months of wonderful memories of love and laughter and tears and pain and joy and happiness. Almost 2000 pictures and 41 minutes of video. Some clothes and toys. The one picture that Harry and I scribbled together. And an ache that will never go away.

I think about Harry every day and I don't expect that to change. He is no longer the very first thing I think of when I wake up or the last thing I think about when I go to sleep. But I think about him often during the day.

But I also think of very happy things. Lydia makes me laugh each day. I treasure every moment with her in I way I never did before. That is one of Harry's greatest gifts to me. He helped me to see just how much I love his sister. I mean, I have always loved Lydia, but losing Harry showed me just how much and how deeply I treasure her. I have much more patience for her and am able to really focus and give myself over to our moments together.

I love Henry more too. Much more deeply, though I didn't even know that was possible. I treasure him more too. I have seen him at his most vulnerable, but I have also seen him in his greatest strength and love, and we have held each other through it all and love each other all the more deeply for it. That is a profound gift.

I think of how much I love where we live. What wonderful friends and neighbours we have. What a blessing it is to live less than one hour from a beautiful lake and beach in the summer.

Little things that used to bother me don't affect me much at all. The one benefit of this experience is that we can say we have lived through one of the worst things that can happen to a family. So while I know our experience doesn't make us 'immune' from further tragedy (oh would that it did!), I know I can face pretty much anything and survive.

Since November we have been planning a big house renovation. People used to warn us, "Oh, doing a renovation can be really stressful on a marriage. There are so many difficult decisions."

Henry and I just laugh at that. This is pure luxury to have the time and money to plan a renovation when many people in the world can't even afford a house. When you have been faced with the decisions we have had to make, choosing kitchen cupboards and such is easy. I think we have had a grand total of one fight over the renovation - and it was all over whether we should put a TV in the living room or not - at the end of it we both felt so sheepish and silly - we recognized it totally didn't matter and really wasn't important and neither of us really cared where the damn TV went!

I still have to remind myself that the stress is over and that I don't have to feel stressed out. I still tend to look for the one next bad thing coming on the horizon instead of all of the good things that are right before us - but I am getting better on focusing on the good.

I remind myself often, "If it wasn't for the fact that Harry got sick and died our life would be pretty much perfectly amazing right now". I try to change that to, "Harry's life was perfect and exactly what it was meant to be, just not what we wanted it to be. Our life is still wonderful, blessed, and amazing and there are many more *good* things to come for us".

It *IS* better to have loved and lost than to never have loved at all, as the old saying goes.

I wouldn't trade my 16 months with Harry for anything. If my choice was to go back and either not have Harry at all or have him again and have the exact same experience, I would choose to do it all over again. Really. Having had the chance to love Harry and be his Mum and experience his incredible and amazing life and spirit. I would not trade that for anything. Okay, yes of course I would trade it for him never having gotten sick ... but even as I write that, I know of all of the amazing gifts from this experience, and I don't know that they would have come without Harry's illness, and I am profoundly grateful for them. I am a much, much better person for having gone through this. This experience with Harry was in almost all ways such a gift. To be held in such love, to experience such community, to know such profound joy and happiness and hope. I have tasted from a rare well of perfection that few are given the opportunity to know. I would not turn my back on that gift.

There are still so many stories rattling in my head. I hope people reading this don't find me self-indulgent, which I know blogging can sort of be. I can't explain it. I know I have heard authors of books talk about the stories and characters being in their head and they just had to write them down to get them out. That is how it is for me with my stories of life with Harry. They rattle around in my head, mostly fully formed and they push and prod and poke until I sit and let them out and write them down. I usually just write and hardly edit anything - everything just comes out the way you read it. But once the story is down and out of my head, I am able to find peace with that part of the story and put it to rest so to speak. So I know this is helping me work through my grief and something I have to do. I can't possibly leave the stories in my head or they would make me crazy.

So I'll continue to write them till they're done.

But now I have to get to bed.

Good night.
Love and light to you all,
Cynthia

4 August Last Year 2008

2009-08-07T10:52:00.016-05:00

Harry would have been 16 months old on 4 August 2008.

Instead, Harry passed over back to God at around 9:00 p.m. on 3 August 2008 - exactly 16 months to the hour that my water broke to start his birth into this world. We come in through water and the breathe and Harry was birthed into his next existence through water and the breathe. I don't think it was a coincidence that he chose that hour to depart. I have also since calculated that, given his due date, he was conceived right around 3 August 2006.

I don't think there were many coincidences in Harry's life. My sense has always been that his life was perfect and exactly what it was meant to be, what he came for. I don't believe that Harry was meant to stay long with us on this Earth. His life mission was to come, drop off a whole, incredible, lot of love, and then return to God. There were too many synchronistic events in Harry's life for it not to have somehow fit into an exquisite plan.

I think Harry chose his time to walk over to God very carefully. While I don't believe that another soul can ultimately hold a soul here on Earth, our connections can make it more difficult for a soul to pass over. I also have come to think of Harry as the embodiment of compassion. He knew, I think, that it would have been too difficult for Henry or I to be holding him when he left. So, as Toni described it, Harry gathered around him the people he knew were strong enough to help us and help him make his transition through the veil. I think Harry also knew that he needed to go before his body needed external support. He knew that it would have been far, far too difficult for Henry and I, and especially Lydia, to see him lying in a hospital bed, slowly dying, increasingly hooked up to more machines to artificially keep him alive.

So, although for us his passing was chaotic, because we were not yet ready for it. I think for Harry it was a very peaceful and easy transition.

I know that Janine was chosen, and chose, to be here, for what she would learn and for what she would offer. That she would hold him in love for his last hour of life. That she would give him something we couldn't bear to - give him loving arms to hold him at the very last.

As Janine described it, Harry didn't really vomit that last time. It was more just a release. He was sleeping peacefully and he just rolled over, let out a huge sigh, and released all of this black fluid. His water broke.

I am quite certain that Harry chose the next moment, the moment Erika was holding him to walk over to God, very, very specifically. He chose Erika because he knew that she had the incredible strength and compassion to hold him in love but not hold him back from what he had to do. I believe that there was a very specific gift and teaching that Harry meant to give Erika in his passing. And her gave it to her because he knew she had the strength and courage to receive it.

Thank you so much for holding my dear son in love for the last hour of his life. Thank you for being here for us and for Harry to allow him the space and grace to jump into God's arms, quickly, painlessly & without looking back. I don't think, truly, he could have died while Henry and I were holding him. I think our souls and love kept him teathered to this Earth. So thank you with all my heart for giving my dear son Harry something we couldn't bear to do - give him loving arms to hold him and let him go, at the last.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

We woke the morning of 4 August 2008 with Lydia bounding into our room to say good morning and Harry tucked into bed between us. Lydia crawled into bed with us, kissed her brother good morning, and gently stroked her little brother, his wee bald head, his velvety soft cheek, his thin arms. We asked her if she would like to have milk in bed with Harry one last time.

"Yes," said Lydia.

So we got her her morning milk and the four of us cuddled in bed in the morning for the last time.

"Why is Harry cold Mommy?"

"Because his soul has left his body. Remember, his body got too sick and his soul decided it was time to leave his body and go back to God. When a soul leaves a body, the body gets cold without the soul in it to give it life".

This was one of the blessings of Harry passing over at home. If he had died in the hospital, we would have been given a few hours at most, in a sterile hospital room, to say good bye to him. Because he passed over at home, we were able to keep him with us and say good-bye in the ways and for the amount of time that felt right and good and necessary. I also think that this is one of the reasons that Lydia has coped so well with Harry's passing, because she got to experience it as a natural part of life, something experienced with her community of love and support, something she experienced with her friends. So even in his passing, Harry continued to give us gifts, the gift of knowing that death is a natural part of life. It is not the end, only a new beginning for all of us.

Henry, Harry and I spent most of the day upstairs in our bedroom. We took turns holding him, telling him how much we loved him, and mourning his passing. As the day unfolded it turned into a wonderful day-long wake. Friends and family came over and came upstairs to see Harry and hold Harry one last time, to say good bye to Harry. Henry's parents, Dave & Grace, Harry's Pake & Beppe, Harry's Auntie Kathleen and Uncle Gareth, Auntie Sandy & Uncle Gary, Erika, Jackie and Eva, Peter and Paula, Toni, Guy and Natalie, Sara & Matt, Simon & Judith, Mariah & Micah, Claude & Angela, Jodi, Abe & Irene (Gareth's parents). Henry and I didn't really go downstairs all day. Friends stayed the day, made a feast and brought us food upstairs to eat for breakfast and lunch.

It was a heart wrenching, yet lovely day. Suddenly, as quickly as it had all started, it was all over. The feeding tube, the meds, the sickness. It was all gone. But in exchange, Harry was gone too. It has always felt to me like on the day Harry was born we jumped into a different universe and on the day he passed over, we jumped back into the universe where it was just the three of us, and Harry got left behind in the other universe. Somehow the three of us had to continue on, without Harry with us.

In many ways it was an uneventful day. A simple day. Spent holding our son. Lydia was playing with her friends, Natalie and Eva most of the day. They would, every now and then, come upstairs to talk to Harry, Lydia would give him a caress or a kiss, and then run off again to play.

Although part of me would have liked to have kept Harry for another night, we knew that the time had come that we had to say good bye to him. Toni had called the Funeral Home her brother works with and arranged for an SUV to be sent around 6:00 p.m. to take Harry's body to the crematorium. Toni would be allowed to ride in the car and hold Harry and make sure he was delivered there safely.

Maybe around 4:00 p.m. I suddenly had the idea that I would like to make more permanent imprints of Harry's foot prints and hand prints, could we somehow find some cement to make a stepping stone or something for the garden? Gareth immediately set out in the car and luckily Michael's crafts was open on the holiday Monday, and he was able to purchase two kits for making a stepping stone. Lydia made one with her footprints and Jodi and Toni and Sara and Peter and Paula and Kathleen helped us manoeuvre Harry's body to cast imprints of his wee hands and feet in stone. Lydia helped me decorate her and Harry's stepping stones with small moon and star stones that came with the kit. One day, when we finally renovate our house. Those stepping stones will go in our garden.

Too soon, it was 5:30 ish and we had to think about wrapping Harry up to take him out of the house.

Henry was the first to think that he wanted to give Harry something special of his to be cremated with. When we were in Poland for the first time, Henry had bought a beautiful pair of green amber cuff links. He wore them all the time. Henry went to our dresser and found those for Harry and tucked them in the front pocket of his overalls.

"These would have been yours someday my son. Daddy wants you to have them now," Henry tenderly told Harry.

Sandy had given me a necklace in the spring, a heart on a black string, engraved with the words "Believe". I had worn that every day and had taken its message to my heart. I took off my necklace and also tucked it into Harry's pocket.

Lydia had come upstairs at this point, "What are you and Daddy doing?" she asked.

"We're giving gifts for Harry to take to Heaven."

"I want to give him something too, wait."

Lydia and her friends ran downstairs to her playroom. They made Harry a picture with a note. I am not sure what it said.

"It is for Harry to read when he gets to the next place," they told us as they tucked it into his side pocket with some little purple flowers they had picked.

Lydia found a little yellow rabbit with purple polka dots - it was one of the first little gifts her Auntie Kathleen and Uncle Gareth had given her when she was born. Lydia tucked it into Harry's overall pockets. A gift from his sister to keep always.

Janine came upstairs with a beautiful purple blanket she had made for Harry. She had started it when he was first diagnosed and had woven all of her love and concern into every stitch, finishing it just in time to bring to Winnipeg.

"Would you like to wrap Harry in this?" she offered.

"It is perfect. Thank you so much" we were once again overwhelmed at the generosity of our friends and the perfect timing - that we would have a new outfit and a new blanket to take Harry out of the house in.

Harry had two lovies - both the same - a Benjamin Giraffe. We had ordered the second one back in March when he was in hospital. Harry (like Lydia) adored his lovie - as long as he had lovie in his arms he could find comfort and sleep. But, in the hospital, Lovie often needed to be washed, so we decided to order a second one so we would always have one clean.

We lay the purple blanket on our bed, lay a green change mat down on it and gently laid out our wee Harry. Just as I had since he was a new born, I lay Lovie across his body - the ribbon edge under his chin and lovie's blanket body covering his body, Lovie's head near Harry's knees, and we wrapped Harry in his new purple blanket.

Everyone gave Henry and I some time to say our last good bye to Harry in our room.

I held Harry in my arms and Henry knelt beside me on our bedroom floor. We told Harry how much we loved him. How much we would always love him. What an honour it is to be his parents and how proud of him we were and how proud we were to have walked this journey with him.

And then I asked Harry, "Harry, if you could send Mummy and Daddy a sign, a sign to let us know you have made it to Heaven okay. If you could send us some sort of sign we would really love that and it would really help us to know you are okay," I whispered to Harry.

Then it was time. I held Harry in my arms and carried him out of our room for the last time. I paused, "Harry this is your parents room".

Next, I walked Harry to his room, "Harry this is your bedroom, this is where you slept."

"This is your sister's room, where we read stories and played".

"This is the bathroom, where you had your baths and helped Mummy brush her teeth."

"This is the office, where you and Mummy worked on her doctoral thesis".

I walked down the stairs.

Our friends and family stood throughout our house, silent, heads bowed in prayer as I carried Harry through our house for the last time.

"Harry this is the front hall and these are the stairs that you had just learned to climb."

"Harry this is the mudroom."

"Harry this is the kitchen, where you loved to open the Fridge."

"Harry here is your playroom, where you and Lydia played."

"Harry here are all of your toys."

"Harry here is the dining room, where we ate together as a family."

"Harry this is where you played in your jolly jumper"

"Harry here is the living room, where we spent so much time together."

And back to the front hall.

"Harry this is your house. It is always your home. This is where we brought you home after you were born, where you lived, and where you died."

And then I carried Harry out our front door, down the front steps, down the front walk, past our friends gathered on the lawn. Erika, Jackie and Eva sat together and Erika played her drum and sang a beautiful song that had come to her during her Ayahuasca Ceremony for Harry on Friday night. It was a beautiful and haunting song, but it was perfect to drum for Harry as he left his home for the last time.

Henry with his arms around me, Lydia holding Henry and me holding Harry. We four walked down the sidewalk towards Toni and the waiting car.

We stopped. I leaned down so Lydia could kiss her brother and say good bye. Henry and I each kissed our sweet son good bye for the very last time. Then I handed Harry to Toni, sitting in the front seat of the SVU.

"I will take good care of him and make sure he is okay," Toni promised me through tears.

We each kissed Harry one last time and then we closed the door and the three of us turned together to embrace. The three of us.

And Harry was gone forever.

But not gone forever.

Because this is now the story of Harry's first rainbow to us.

Later that night, again around 9:00 p.m., I was upstairs with Lydia putting her to bed. Henry was sitting in the living room, in my comfy breastfeeding chair that had just been brought downstairs 24 hours earlier. He was looking out the front window at the gathering dusk.

It had been a wonderful sunny day with not a hint of rain.

But at that moment, exactly 24 hours after Harry had passed over, Harry sent us our sign.

"OH. MY. GOD. Cynthia, Lydia come quick! You have to see this!!" Henry called up to us, barely able to contain the excitement and joy in his voice.

"Look. Look. Do you see it?" tears of joy ran down Henry's face.

And there it was. A perfect double rainbow in the south east sky, framed by the trees, just above the corner store. It was only visible if you were sitting looking out our front window, as Henry had been.

The three of us stood on our front lawn and laughed and cried. "It's from Harry. Look, Lydia, do you see the rainbow? It is a sign from Harry. He is okay. He is in Heaven. He is with God".

And then as if to put an exclamation point on his message, two number 10 busses - one right behind the other - passed under the rainbow along Wolseley Avenue.

The rainbow was so bright, it glowed and hung in the sky for a good ten minutes. We watched it until it dimmed and then faded from view.

Henry and I stood arm in arm, holding Lydia between us, tears streaming down, but laughing with joy. We felt absolutely giddy and drunk with joy.

There was no doubt in our minds. This was our sign from Harry.

We are all connected, we are never alone. Love never dies. Just as God sent Noah the first rainbow, to mark his covenant that he would never again bring such destruction and never abandon his people, but be with them always. Harry sent us his rainbow. His covenant to us that he is always with us. He is not gone, he did not abandon us. He is with us always and loves us always.

Yes, Harry had left his body. But there was no question. He was not 'dead'. His body had died.
But Harry's soul, his spirit, his essence, had simply walked on.
Walked on to the 'next place'.
Walked on back to God.
Walked on to new life.
Walked on.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

There is a song we sing at church. We had not yet heard it this day. We heard it for the first time in November. I have written a blog post about it - but I have yet to actually post it. I will soon.

But this song, it is all Harry. It could have been written about Harry and his passing. When you read the words you will understand why I love it so much, yet why I always cry when we sing it.

It is called "The Great Storm Is Over" and it goes like this:

The Great Storm Is Over

Alleluja, the great storm is over
Lift up your wings and fly (Repeat Twice)

The thunder and lightning gave voice to the night.
The little lame child cried out in her (his- RCN) fright.
Hush, little baby, a story I’ll tell.
Of love that has vanquished the powers of hell.

Alleluja, the great storm is over
Lift up your wings and fly (Repeat Twice)

Sweetness in the air and justice on the wind.
Laughter in the house where the mourners had been.
The deaf shall have music, the blind have new eyes.
The standards of death taken down by surprise.

Alleluja, the great storm is over
Lift up your wings and fly (Repeat Twice)

Release for the captives, an end to the wars,
New streams in the desert, new hope for the poor.
All the worlds’ children will dance as they sing.
And play with the bears and lions in spring.

Alleluja, the great storm is over
Lift up your wings and fly (Repeat Twice)

Hush, little baby, let go of your fear.
The Lord loves his own and your mother is here.
The child fell asleep as the lantern did burn.
The mother sang on ‘til her bridegroom’s return.

Alleluja, the great storm is over
Lift up your wings and fly (Repeat Six Times - Third Time Accapela)

@Bob Frankes

And that was my wee Harry. The great storm that raged in his body was over and he just simply lifted up his wings and flew, flew up to heaven.

3 August Last Year 2008

2009-08-05T00:48:00.010-05:00

I have been thinking of how I would write this story for a year now. It has been rattling around in my head. I have written different versions in my mind over and over. Now I put in down on paper to get it out of my head and make peace with this part of the story.

This is the story of the day and night Harry died.

I did not write a journal entry for this day, a year ago. The last entry in my journal was for 2 August.

I did write on the 2nd about our last night with Harry in our bed. He was vomiting frequently, restless and slept fitfully. Harry alternatively cuddled with me or Henry.

Our last day with Harry started like any other day with Harry. We woke up in bed together. Harry nursed, Lydia drank her milk. We lounged together, all four of us in our bed, Lydia and Harry laughing and playing together.

Next going downstairs to start our day of tube feedings and medications. Despite his rapid deterioration, Harry rarely appeared to be in pain. We had Tylenol for him and about a week before he passed over the doctors gave us codeine to give him if he needed it. But as long as Henry or I were holding him he seemed to be content. He did not cry or fuss too much, if at all. Especially during the day, as long as we were holding him he would settle in our arms.

I don't really remember what we did that morning. I don't really remember much of the early afternoon either. Janine took Lydia for a walk and bought her a lovely pink jeweled box at a near by bookstore. Lydia loves that box, keeps it one her side table (when it isn’t in her purse) and keeps special rocks inside it that we bought at the Grand Canyon last fall. She tells me the rocks represent her and Harry and things like "love", "peace", "happiness", and "love never dies". She knows still that she got it on the day her brother died, or as we prefer to say, walked over and left his body.

Toni came over. Toni is one of Harry's special people - Toni and Harry have had a strong connection ever since the first night she held him. It was in September of 2007. The girls (Lydia and Toni's daughter Natalie) had started back at dance class at the club on Monday nights. It was one of the first Family Nights in the Gym. I remember Toni scooped up Harry at the beginning of the dance class and he slept in her arms the whole hour. Harry had Toni hooked after that one evening.

As Toni put it later, "It was like he knew he was going to have to do something very big. So from a very young age he started gathering the people around him who he knew he would and we would need to get us through what he had to do".

Harry always perked up for Toni and would reach for her when he saw her, to be held in her arms. Our wonderful neighbours Jackie and Erika also spent much of the afternoon with us. Holding Harry, when he would let them and just keep us company and offering their support. Erika suggested bringing downstairs my comfy nursing chair. If we were going to be spending time holding Harry during the night, why not have one of us sit downstairs comfortably with him and let the other sleep for a few hours upstairs? We thought it was a good idea, and moved the chair and footstool into the living room.

Maybe around three in the afternoon, Jackie and Toni suggested that Henry and I get out of the house together and go for a walk, just to have some time alone. They assured us that Harry would be fine with them for 30 min to an hour. Henry and I went for a walk down our street to Palmerston Avenue, along Palmerston to Wolseley and down to Omand's Creek and then back home. We held onto each other so tightly, each almost having trouble walking and needing the other for support.

We were so exhausted. I don't recall all of our conversation together. We were both so worried about Harry. I do remember at one point, walking along Wolseley, just past the Wolseley school, we both broke down.

"Oh God," I cried. "Harry can't die. He just can't, I can't lose my son. I can't live without my son. How can I possibly live without my son?"

Poor Henry fell to his knees on the sidewalk with a heart-wrenching cry lamented, "My son, my beautiful son, my name-sake. He can't die."

Henry is such a proud Papa. He adores his princess Lydia. At the same time, he was so incredibly proud to have such a beautiful little boy. Sometimes he was worried he was too proud. Was this a punishment of pride? I have always assured him, as he has always assured me when I stray to the victim narrative, that Harry's illness is not about punishment. It is not about something we did or did not do.

Until that moment, we had not really talked about the possibility of Harry actually dying. I suppose that might be viewed as denial and I guess in a way it was. But up until July 18th, the day we found out the chemotherapy was no longer working, we fully and completely believed that Harry was going to beat his cancer. This was barely two weeks later. We were still adjusting from the shock of the path of chemotherapy and transplant being closed to us. We still felt we were trying to figure out a different path to healing Harry. We hadn't even had a chance to process that he really might die before we were faced with his actual passing.

We hadn't had a chance to even begin to accept the inevitability of his death and to think about how we might prepare for it, before it was upon us. Maybe if we had had more time, we would have accepted palliative care and made end of life plans and thought more carefully about how we wanted to prepare for and experience Harry's passing. But we didn't have any time to do any of that.

On that Wolseley sidewalk, both of us full of fear of what might lie before us, yet we both were unwilling to give into that fear. We, instead, again decided to choose love and hope instead.

"No." We recommitted to Harry and each other. "We will not give up on our son. We will not lose hope for him. We will walk with him in honour, love, hope and faith until the very end.” We just didn't know any other way of walking this journey with Harry.

We both felt revived after our walk and ready to face another evening and night. We could do this. Harry was so strong and brave. We would be strong and brave for him too. We decided I would take a nap when we got home. Henry would take the first shift with Harry, till maybe 2:00 am. Then I would take over for the night.

We came home. Henry took Harry. I went upstairs to lie down and try to sleep. I was so exhausted. I couldn't sleep. I picked up a book I had recently bought, called "The Divine Matrix" by Gregg Braden. It is an okay book. Baden is a bit too certain of his own perspective. Something I am always a little skeptical of when we are talking about realms of space and time that we humans can only glimpse. I immediately distrust anyone who claims that they know exactly "how the world works". Nonetheless it does contain some very fascinating ideas and definitely some real kernels of truth.

I can't find the exact passage I read at that time. I had simply opened the book to where ever it fell open and started reading. But the passage was about the power of intention to heal, the power of belief. How it is possible to jump from one state to another in an instant, through the power of intention and belief. My teacher, Kimberly, often says that too often, people give up when they are 99% of the way there in manifesting what they desire. I read that passage about the power of intention, especially in terms of healing and felt a new resolve. What if we are just at the 99% with Harry? What if we just have to get through the weekend and then we will turn a corner for the better? I will not give up on him. I will not give up hope and faith. I will stay centred in the positive and believe that Harry is healed.

I slept for a while and then came downstairs at about 6:00 pm. Henry passed me Harry. I don't remember what we ate for dinner that night. Janine and Henry must have prepared supper. But I do so clearly recall sitting on the couch in the living room, holding Harry, nestled in my lap, facing out, his wee head leaning against my arms chest. Lydia danced for us in the living room. She danced for Harry, a Happy Dance. I remember feeling very much at peace and very blessed to have my two beautiful children and felt reassured that somehow, in some way everything was going to be okay. Harry was going to be okay, we were going to be okay.

I don't have any really specific memories of the next few hours, between then and 9:00 p.m. Erika had come over to keep us company for the evening. I was also waiting for a phone call from Dr. Hall in New Mexico. We had phoned and texted her about the black gooey stuff that Harry had started vomiting on Friday, and we wanted to know if she could get a reading on how he was doing and what that might mean and what we could do for him to get it out easier. Around 8:00 pm, maybe, Erika insisted that Henry go upstairs and try to nap a bit. She and Janine could take care of Harry for a few hours, to give us a break.

Later, Henry told me that his last thought just as he was drifting off to sleep was that when he woke up, either Harry would have turned a corner and been better or he would have died. I have since asked Henry, “And you went to sleep? You didn’t think to get up at that point? With that last thought?” But, he explained, it was one of those fleeting thoughts when you are not really conscious, so you can’t really respond to it.

The only thing I do clearly, clearly recall of this time in the early evening is nursing my baby Harry for the very last time. It was just before I took Lydia upstairs to get ready for bed. I held him in my arms. As I had done hundreds if not thousands of times since the day he was born. At 16 months the two of us were old pros at it. He easily nuzzled in and latched on. He didn't drink much, but enough to comfort both of us. Harry often held one of my hands when he nursed and I am sure he did that last time. And I am sure I stroked his head and his impossibly soft cheek and wee bald head.

I also clearly recall the look in his eyes when he was finished and I sat him up. It didn't fully register at the time. But I remember the thought flashing through my mind, "Harry's eyes look unfocused". His huge blue eyes. Once rimmed with the longest and thickest of lashes, now stripped by chemotherapy of both eyebrows and eyelashes. But still, always, Harry's huge, huge beautiful blue eyes. But they were unfocused. I know now, already starting to focus on the other side of the veil.

Somewhere around 8:00 p.m. I passed Harry to Janine for the first and last time. Janine had yet to hold him. Janine has two little girls, (with a third on the way, due in November!) and is well versed in soothing babies. Janine held Harry on the couch and I took Lydia up to bed.

The whole time Harry was sick we had never, ever once told Lydia that Harry might die. She knew he was very sick. She had accepted his chemotherapy and hospital visits with remarkable ease, as just a part of life. A wonderful colleague of my brother-in-laws had sent her two books when Harry was first diagnosed, "When Molly Was in the Hospital" and "What About Me? When Brothers and Sisters are in the Hospital". From the very first night she received them, these two books became Lydia’s favourite nighttime stories. We ready them several nights a week, if not every night some weeks. Lydia could relate to the kids in the stories. Molly had a feeding tube just like Harry. She had surgery and a bandage and scar on her tummy just like Harry. The IV pole and the various pumps hanging there looked just like Harry’s. In the other story, a big sister Laura is frustrated by how much time her parents are spending in hospital with her little brother, Tom. Tom is very sick and needs to be in hospital for a lot of treatments. I think these stories helped Lydia process her experience with Harry so deeply. She could relate to so many elements of the stories and we would always point out what was just like her and Harry.

But neither of the kids in those stories, Molly and Tom, neither of them dies. I could not bring myself to tell Lydia that Harry might die. I didn’t see the point, honestly, of worrying her about it. Until July 18th, as far as we were concerned, it wasn’t going to happen, so there was nothing to prepare her for. After July 18th we felt it was still too much for such a young child to comprehend. Not yet imminent enough to worry her.

But that night, preparing Lydia for bed, I realized that the time had come and that I had to prepare her for the possibility that Harry might actually die. The whole time I prepared her for bed, pee try, face washing, tooth brushing, I tried to find the words to tell her, a wee 4 ½ year old girl, to tell her that her beloved little brother, her Hares-y-Bares-y-Boinga-Boy, was going to die.

It was just around 9:00 pm. We had just settled into Lydia’s bed, the covers pulled up, Lydia snuggling with her lovie and blankie and milk in hand. We had started to read a story.

Now, here, everything happened so quickly, that my timing in my memory is a bit off.

Dr. Hall must have called. I was expecting her to call back, because I had brought the phone up to Lydia’s room.

Janine came upstairs to Lydia’s room; her green capris covered in the black vomit, and reported, “Harry has just had a massive vomit. He was sleeping peacefully in my lap and he just sort of rolled over, and not so much vomited as sighed a big sigh and then released a huge amount of black fluid.”

Janine continued, “I gave him to Erika to hold. I’m just going to change my pants”.

Just then the phone rang. It was Dr. Hall. I didn’t want to take the call in Lydia’s room. So I asked Dr. Hall to give me a minute to go downstairs. I promised Lydia I would return as soon as I was finished, that I just had to take this call from the Doctor. One of the few times in her life, Lydia agreed with me without a fuss, and snuggled in her bed with her milk.

I went downstairs and sat down at my desk in the dining room. Dr. Hall was starting to tell me what she was finding. But then Erika approached me, holding Harry. She was holding him upright in her arms. Her one hand was under his bum and her other across his back. Harry’s head was resting on Erika’s shoulder and his arms were up on her shoulders too.

Harry was wearing his blue track pants and one of his giraffe diaper shirts.

As she approached me Erika said, very calmly, “Harry, are you breathing?”

My heart stopped. I looked up at Erika standing next to me with Harry in her arms. My eyes went to his back right away and I knew in an instant he was not breathing. Erika asked again, “Harry, are you breathing?”

Poor Dr. Hall. I didn’t say anything to her. I just dropped the phone on the floor. Stood up and took Harry from Erika’s arms.

I held him lying down in my arms. My left arm supporting his head, my right arm under his legs.

I could feel he wasn’t breathing. I think I knew in that instant he was already gone. But I could not believe it.

I thought to myself, “No, No, No, Harry, not yet, you can’t leave yet. We’re not ready. Oh God, Harry not yet. Please don’t go.” And in another part of my brain, a more distant observer said, “Oh, so is this how it goes? Is this how it ends then?”

I ran to the stairs and called up to Henry, “Henry, come quickly Harry is not breathing.” Erika was running right with me.

Janine suddenly appeared downstairs. She grabbed the phone. “Should I call 911?” she asked.

“Yes, yes, call 911,” I cried. “But wait, also call Cathy, the paediatric oncology nurse. She said to call her anytime the minute anything went wrong. Call Cathy, her number is in the front of Harry’s cancer binder.”

Janine had dialed 911 and handed the phone to Erika. Janine grabbed her cell phone and called Cathy. I recall Erica speaking calmly to the 911 Operator. We needed an ambulance. A baby had stopped breathing. To what address. Erika ran outside to check our house number. I stood in the living room and held Harry.

“NO, NO, NO, NO, NO” ran screaming through my mind. “No Harry, not tonight, you can’t go tonight.”

Next was the most haunting moment of the whole night for me. Lydia came downstairs into the living room, in her nightgown, clutching her Lovie. She saw me holding Harry limp in my arms. She looked up at me with her big green trusting eyes, from her round cherub face and she asked me, “Mummy, what is wrong with Harry?”

I didn’t answer her. Or maybe I told her, “Harry has stopped breathing.” I am not sure. Just then Henry came downstairs. I had been standing just inside the living room, just inside the French Doors, Lydia was on my left. Erika came back into the living room, from the front hall via the dining room.

“We need to do CPR. Can you do it Cynthia?” she asked.

“Yes.”

“Put Harry down on the ground.”

I put Harry down on his little change mat. I lay down my dear wee fragile son on a mat on the end of the living room carpet just near the dining room, his head near the big chair, his feet facing the couch.

“Lydia, go to Daddy right now.” I said to Lydia.

At this moment, Henry tells me. He held onto Harry’s feet, and they were already cold. He could have only stopped breathing for no more than 2 minutes at this point, but he had so cleanly jumped that his feet were already cold. In that moment, Henry said he knew that Harry was gone, even if he could not yet believe it.

Henry sat across from me, holding Lydia. Erika sat at Harry’s feet holding the phone and relaying the instructions from the 911 Operator.

As I have had to do so many times during Harry’s illness. I was instantly in that “mother zone” that place where a mother goes when her child needs her and she just has to completely focus and not think of anything but what they need.

“Sweep his mouth with two fingers for foreign objects”. Check. No foreign objects.

“Put a hand under his neck, with the other hand gently tip back his forehead. Listen for breathing”

Nothing.

“Pinch his nose. Make a perfect seal of your mouth over his mouth. Blow in three quick strong breathes.”

Harry’s chest rose with my breathe, as it fell more of the black liquid came out of his mouth. I turned his head sideways to let it drain out.

I think Lydia asked Henry at this time, “What is Mummy doing to Harry?”

Janine intervened, “Lydia do you want to go upstairs and read a story?”

I don’t know for how long I did CPR, not long, a minute or two maybe.

“Breathe, Harry, please breathe,” I pleaded in my mind.

But another part of my mind knew. He is already gone. But we had to go through the motions. What if he wasn’t ready? What if he wanted to come back? We had to give him a chance.

We heard the ambulance coming down the street.

The paramedic team came into the living room. They took over. They moved Harry to the middle of the living room. Machines, suddenly the living room was filled with 3 or 4 paramedics and a rash of machines.

Suddenly, Jackie was there too. Jackie is a maternity ward nurse. She knelt down to speak with the paramedics. Henry and I stood in the doorway between the dining room and living room, looking on, at our wee son, surrounded by paramedics and machines.

“We can’t get a pulse. Should we intubate him?” the main paramedic, a woman, working at Harry’s head, asked as she started to tape a tube onto his cheek to start the intubation.

A man approached Henry and I. He was the chief or head, or who ever was in charge.

“Do you have a DNR?” he wanted to know. If we did not have a DNR, because we had called the ambulance, they could not stop. They had to intubate him and transfer him to the hospital.

Henry and I could barely comprehend what they were saying.

Jackie, so calm, trying to mediate for us. “Was that necessary? Did we have to transfer him? Was that what we wanted?”

This is where I should have pulled out the letter. But I forgot completely about the letter.

“A DNR? No, we have not yet had time to sign a DNR.”

I took one look at Harry. Right up until that moment, I still though that somehow he was going to make it. I expected the paramedics to revive him. For him to have a big vomit, get all of the black stuff out, and for him to sit up and just smile at me and be okay.

But looking at him on the floor. I knew. It wasn’t going to happen that way.

And in that instant, we had to make the hardest decision of our lives. But also in that instant, seeing Harry lying on the living room floor. The decision was simple.

“No, no please, no more,” I said as we moved over to the paramedics. “Please stop. Don’t hurt him. Please stop.”

Henry pleaded too, “Please stop, we don’t want to intubate him”.

The paramedic working on Harry looked up at her boss for direction.

Suddenly, Dr. Israels appeared in the doorway to the living room.

“I’m Dr. Israels, this boy’s oncologist. He is terminally ill with cancer and expected to die. You can stop.”

And they stopped.

I collapsed under the dining room table. In tears, convulsing, screaming.

No, No, No, No, No Not Harry. No. Oh Dear God. He can’t be gone. NO.

But he was.

Very quickly the paramedics packed up and left. Someone helped me up.

Just as suddenly, Cathy was there too. We knelt on the living room floor beside Harry. Someone had brought a hospital bed pad from upstairs. Cathy placed Harry in the pad and picked him up and put him in my arms.

“Can we please take his feeding tube out now?” I asked.

I had always dreamed of the day it would come out, when he was all-better and he didn’t need it any more and he could eat once again on his own. Not like this.

We very gently removed the tape from his cheek for the last time and pulled the feeding tube out.

We moved up to the couch, Henry sitting on my right, and held Harry.

Lydia came downstairs.

“Mummy, what has happened to Harry?”

I pulled Lydia onto the couch beside me, on my left side. I cradled her in my arms and said,

“Lydia, my love, I am so sorry. Harry has died. His wee body just got too sick. The cancer was too much for him. He got too sick and his soul couldn’t stay in his body any longer. So he just jumped, Lydia. He just jumped right out of his body and into heaven. Remember how I told you, our soul never dies, it just leaves our body? Harry’s soul has left his body, Lydia. But don’t worry. My Daddy, your Opa, he was right in heaven waiting to catch Harry. And Harry jumped right into Opa’s arms in Heaven. And Opa is going to take good care of Harry in heaven now.”

I think that is what I said to Lydia. Or something very near to that. A police officer came into the house and gave Lydia a teddy bear. He said he was sorry about her little brother and hoped the bear would help comfort her.

Lydia just seemed to accept my explanation at that time and not ask more. We sat on the couch and just held Harry.

I suggested someone phone Toni. She would want to know and come right away. Somewhere around here Henry called his sister Sandy to tell her. Sandy said she would call Kathleen and Gareth at the lake and tell Henry’s parents, Dave and Grace, in the morning.

Cathy asked us if we had any thoughts on a funeral home. We should call someone soon to come and take Harry. We had no idea. There was a local funeral home just on Portage. We said okay, we liked the idea of someone from the neighbourhood. But we were not ready to call just yet.

“Would you like to give Harry a bath?” Cathy suggested.

“Yes,” Henry and I replied. “We would very much like to do that.”

We carried Harry upstairs and to the bathroom. Cathy helped run a bath and we undressed Harry for the last time on the bathroom floor. His track pants, his giraffe diaper shirt, his diaper. We threw them in the garbage. I think it was just before we bathed him (or maybe it was earlier downstairs?) that Cathy cut off the two lumens that came out of his chest and tied the end off in a knot.

Gently, we lifted Harry into the tub and Henry and I washed him. We cleaned his perfect little hands and feet. We rubbed his perfect head. We washed his tummy and back. Lydia came upstairs to see what we were doing.

“What are you doing Mummy?” she asked.

“We’re giving Harry his last bath. Would you like to help?” I asked her.

“Yes.” Lydia said. And she reached into the tub and gently rubbed some soap on Harry’s tummy and rinsed it off. Then went back downstairs.

We carefully lifted Harry out of the tub for the last time and laid him out on the bathroom floor on his blue elephant bath towel.

Henry wrapped him up in it the same way he had done so many nights before and carried Harry to our bed in our room.

“Do you have any cream that you usually put on Harry’s skin?” Cathy asked.

“Yes, we always use the Aveeno baby cream,” I said. “It is in his room.”

Cathy went to get it. We gently rubbed Harry dry then uncovered Harry’s wee body and lovingly for the last time, rubbed him all over with his baby cream.

Lydia again appeared in our room.

“What are you doing Mummy?”

“We’re putting cream on Harry for the last time. Would you like to help?”

“Yes.”

So Lydia climbed up on our bed, took a dollop of cream and helped rub it on Harry’s arms and legs. When she felt finished she went back downstairs.

“Do you have an outfit you want to put Harry in?” Cathy asked.

Ah, the outfit. “Yes, we have a new outfit. My sister just sent it from France for his birthday. It is downstairs on the dining room table,” I sighed. My thoughts from a few days ago flashing through my mind.

Cathy got the outfit and we dressed Harry, for the last time, first in a diaper, then in his lovely orange shirt, then in his blue overalls.

We laid our favourite orange baby blanket on our bed and laid Harry out on our bed.

Janine came upstairs. “Would you mind? I have brought Holy Water from my church (or maybe it was Holy Oil?) could I anoint Harry?

“Oh Janine, that would be lovely”. So Janine made the sign of the cross with the holy water on Harry’s forehead and said a blessing and prayer for him.

Suddenly, Sara and Matt were there with us in our room. My memories are really rather disjoint. As people just seemed to appear, I don’t remember them coming, or me greeting them or anything. Suddenly they are there and helping in some way.

“Do you want to take any pictures with Harry?” Sara asked.

“Yes, oh yes, that is a good idea,” I agreed.

Sara got our camera and we took some pictures of Harry. I took a picture of his perfect ear, with his little brown beauty mark, so I would remember it always. We took a picture of his hand in my hand. My hands holding his feet. Henry giving Harry a kiss on his forehead. Me giving Harry a kiss on his forehead. And then Harry, our wee Harry, laid out on our bed.

Another idea popped into my head. “Can we make copies of his hand prints and foot prints?” “Jodi bought me a little kit in the hospital, but I never yet used it. It is in the drawers that we always take to the hospital for chemotherapy, in the front hall. In the bottom drawer I think.”

“Paper, I have scrapbooking paper in the office”. We found the paper and selected four orange sheets.

Harry’s hands were starting to stiffen by now. We had to uncurl his fingers to spread on the paint, but we managed to make two good hand prints and two good foot prints as well.

There didn’t seem to be anything else to do.

Henry tells me that Sandy and Gary came that night too, and Sandy had called Susan and Russell from church, and Susan had come. But it is funny. I am so sorry, but I don’t recall that at all.

Toni and Guy had arrived sometime while we were upstairs. Toni had cuddled Lydia on the couch until she fell asleep and had carried her up to her bed, somewhere between 11 pm and midnight.

Toni came up to the room. Toni’s brother Rick is an undertaker and runs a crematorium. She offered to call him and see if we could use his services. That sounded much better to us, someone to whom we had a direct connection.

At some point in the night, Erika told us something we were so grateful to know, “Don’t let them take Harry to the funeral home before you are ready. You can keep him at home as long as you want. There is not a set time. Don’t let them take him away before you feel ready. Keep him here for three, four days if you want to. It is all up to you.”

That gave us such relief. We were not ready to yet say good-bye to Harry, we needed to keep him with us a little longer still.

We sat in our room with Harry. Different people came up to sit with us and see Harry. I will have to get Toni to write of her experience in the room with Harry. I cannot do justice to her experience in that moment.

Somewhere around one in the morning, I realized it was now 8:00 am in Europe. So I decided to call my sisters and let them know the news.

I sat on the front steps, outside under the stars, and dialed Sarah’s in-laws number in the south of France. I think Michel, Christophe’s Dad answered the phone. I asked to speak to Sarah. Just a few days ago I had sat on the same front step and talked to Sarah and cried to her over the phone, “Oh Sarah, Harry is so sick and weak, but he can’t die. I can’t live without my son. How can I live without my son?”

But now, here I sat, and I had to call my sister and tell her that my son had indeed died and I had to figure out how to live without my son.

Sarah came to the phone, I said to her, “Sarah, I am so sorry to have to tell you, Harry died here at home, at about 9:00 pm this evening.”

“Oh no. Oh Cyn. Oh no. Oh I am so sorry.” I don’t remember what else I said.

Next I called Cecelia in Poland, and said a similar thing, “Cecelia, Harry has died.”

I waited until the morning to call my Mum in Guelph.

I went back inside. It must have been about 2:00 am by now. Everyone was tired. We said good night and Toni & Guy, Sandy and Gary, Erika and Jackie all went home. We had said goodbye and thank you to Dr. Israels earlier and Cathy had left too by this point.

Henry and I locked up the house, turned off the lights and went up stairs to bed.

We placed Harry in bed between us. We got ready for bed and then we crawled into bed, for the very last time, with our wee Harry between us. Harry’s hands were soft again by this point. And so I took his wee hand in mine and I held his hand and fell into a deep and dreamless sleep. I held his hand in mine all night long.

3 August 2009

So much has happened in the past year. That night seems like such a long time ago. Yet it is still so raw as well. It is very late on the 4th, well it is now the 5th. But I could not go to bed before I got this story down, both of last year and last evening.

To mark Harry's First Angel Day, we held a Cherokee Ceremony of Remembrance at our house, with family and a few close friends. My teacher Kimberly gave me the ceremony. We planted a Pin Cherry Tree in our front yard in honour of Harry. We made a chain of coloured ribbon and each of us shared a gift Harry gave us during his time with us. And Lydia planted a Bleeding Heart, because, in her words, "we should plant a bleeding heart, because we hold Harry in our hearts and it will bloom every year and remind us of him". How does a five-year old know to say and think such profound things?

I know with all certainty, that on that day one year ago, Harry did not die. Yes, his physical body stopped working. But that which makes Harry, Harry, his soul if you want to call it that, that did not die. That never dies. Harry simply left his body and walked back over to the other side. I can't claim to know where the other side is, or what happens to us there. But I know Harry sends us signs from there to let us know that he is okay. He sent us another rainbow last night.

During our ceremony of remembrance, about mid-way through the ceremony about 7:30 CST, again, even though it did not rain all day and was clear and sunny most of the day. The sky started to cloud over about 6:30, in the southeast. I watched the clouds gather and start to swirl as I spoke and at 7:30, just as Henry was about to share his gift from Harry, another beautiful rainbow appeared in the sky - in the exact same spot where we had seen a rainbow after Harry had passed over. I know that was my Harry, letting us know, again, that he is still with us, that he has never really left us, that he is okay, and that he loves us always.

I didn't know how I would feel today. But I can honestly say I feel at peace. I will never stop missing my beautiful Prince Harry. I will love him and hold him in my heart always. But I know his life was exactly what it was meant to be and while his physical body may be ashes and dust, that which made him Harry lives on.

Mummy loves you dear sweet Prince Harry. Happy First Angel Day.

Love Mummy Cynthia

Finally, some pictures Uncle Gareth took of the Ceremony yesterday.

2 August Last Year 2008

2009-08-03T09:43:00.010-05:00

I sat up till 3:00 am with Harry on the couch - he snoozed and vomited alternatively.

Concerned about dehydration.

This am - 9:00 am went to Dr. Sims for Harry's second IV Vitamin C treatment. He also gave Harry 200 cc of fluid.

Ran around to pick Janine up from airport. We were late due to extra IV fluids @ Dr. Sims. Missed her at the airport - she was waiting at our house when we returned.

Cathy & Dr. Isreals came by - gave IV hook up & portable IV pump, but we're concerned with the amount of sugar in the IV water /solution.

All day Harry's tummy was better, taking some food and keeping down meds.

Lydia's most beautiful thing was helping Janine make dinner - grating cheese for chicken wraps. Mine was having Janine arrive - *so* wonderful to have her support.

Also Jim came with Erika to offer energy from their Ayahuasca Ceremony, done the previous night (Friday) for Harry. Very moving "sublato" (sp?) ceremony or "breathing of energy" via breathe and tobacco. Jim sang sacred songs for us and blessed us, all four of us, with the breathing of energy.

Felt amazingly revived and strong after.

Claude also came to give Reiki and body talk to Harry.

We took him off the IV, concerned with bloating. Now very concerned that black tarry toxins are clogging bowel, as no BM since Friday at 11 pm-12 am. I think he might be massively constipated - how to help him move this out?

Henry's most beautiful thing was the Sublato ceremony with Jim - very moving and so much energy.

But another very sleepless night (saturday), Harry back to vomiting off and on all night.

2 August 2009

Oh to have known that this was our last full day with our Prince Harry in this mortal world. Would I have savoured each moment a little bit more?

Henry and I were feeling pretty exhausted by this point. We had not had a solid night sleep in probably two weeks. Taking care of Harry 24/7 was starting to take its tole on us. It wasn't just the care for Harry. We did that gladly.

I remember when Cathy and Dr. Isreals were leaving, just before they went out the front door, Cathy turned back and asked, "Are you getting much sleep?"

I replied with a shrug, "No, but Harry's hasn't ever slept through the night in all of his 16 months, so I haven't really slept in 16 months, I'm used to it. There will be time to sleep when Harry is healed."

"Let us know, when it is getting to be too much. If you need help." Cathy insisted. "Call me anytime, if you need anything."

"We're fine. We'll manage just fine." I just couldn't imagine any kind of help, didn't want any strangers in our house right now.

It wasn't just the taking care of Harry that was so stressful. It was trying to figure out the best route to healing him that was taking its toll. When allopathic medicine runs out of treatment options, that is just it. They say, sorry very much, there is nothing more we can do. They offer palliative care and medicine to keep your baby *comfortable* in his last days.

We refused to simply give up on Harry because allopathic medicine had run out of their one option and given up. We have read too widely, experienced too many other cultures and ways of being, to simply accept the western, rational-scientific worldview as the final arbiter on life.

As wonderful as our medical system is (and I will defend the Canadian medical system against all critics), it does not allow very much at all for other modes of healing. Well, there is some latitude for alternative healing, but only as a secondary complement to allopathic medicine, for example, Reiki was offered at the hospital, but not as a genuine healing modality in and of its own right.

So we were basically on our own, trying to design a comprehensive alternative treatment healing regime for Harry.

When Harry was first diagnosed, I had picked up a book call, "The Field" by Lynn Mctaggart. This book explains the latest quantum physics behind the idea of what has been alternatively called the Zero Point Field, the Quantum field, the Divine Matrix or just the Field. It is far too complex to explain in this blog post. But, very simply, the idea is that we are immersed in a unifying energy field and we ourselves are fields of energy. Our energy fields are constantly 'downloading' information from the Universal Energy Field (UEF). This field contains all knowledge and memory, past, present and future. This is not science fiction. This is leading-edge quantum physics. But these ideas also unify the ideas of the ancient mystics and saint and modern quantum physics. In leading-edge quantum physics western science and spirituality meet and converge.

Our energy fields have been called chi, life force, prana.

Reiki, energy field work, acupuncture, qi-gong all work with our energy/ energy fields.

In simple terms, (though it is not nearly so simple and I am making a gross over-generalization here) disease is manifest as blockages in our energy fields and different types of alternative healing modalities work on breaking down and moving out those energy blockages.

So were were working on developing a mixture of intense oral vitamin treatment, dietary treatment, and naturopathic treatment (working with a naturopathic doctor here in Winnipeg and a second one in New Mexico). A neighbour is a Reiki master and he was giving Reiki and body talk to Harry, as was another friend. Henry took Level I and Level II Reiki to give it himself to Harry. I took Level I and II in a type of energy field work, called Way of the Heart. And of course, hundreds if not thousands of people were praying for Harry all over the world.

But trying to do all of this learning and research while also taking care of a critically ill child, and trying to somehow keep life normal for his 4 year old sister was very, very, very hard.

Janine has asked me since, "Did I know that Harry was dying?"

Poor Janine, in the week between when we made our plans for her to come from Toronto to help us out and her actual arrival, Harry got so sick so quickly. By the time she arrived on 2 August. He was so thin and frail and sick and weak. I am sure it was a huge shock to her to see him. We just saw our same Harry. Janine has commented to me that she could not believe the level of intensity and stress in our house when she arrived. We had no idea - it was just our life.

Did we know he was dying. No. Not really. You see, when you are pushed to a place at the very edge of life and death, living on that knife-edge, you only have one option. You have to choose. Hope or fear. There is not room enough on that thin edge for both. When you are looking into the abyss, you have to make a choice and the choice becomes very, very, crystal clear. We chose hope. We could not live with ourselves had we chosen any other way. We very intentionally chose to have hope and believe that Harry was healed.

I remember back in the winter, Russell, our minister at St. Mary's Road United Church, preached a sermon about one of the New Testament healing stories and the faith of a woman who had been experiencing hemorrhaging / bleeding daily for over 12 years. Through all of the 12 years of pain and suffering she never wavered in her hope and faith that God would heal her.
Upon seeing Jesus, I think she was one of the people who just touched his robe and either Jesus or one of the disciples asked, "Who touched my robe?" Seeing the woman Jesus said, in his customary fashion, "Your faith has healed you".

Russell talked about how, in our day and age, we would think this woman foolish for having such deep faith and hope in healing, through 12 long years of suffering. We would think it crazy that you would hold onto faith and hope in the face of such sickness. We would think it impossible for someone to be healed in an instant.

I remember thinking to myself during that sermon, "But you haven't been pushed to the edge, to that place where you have to make a choice. Where it is not theoretical. Where you have to choose between faith and hope or fear and darkness. When you are pushed to the edge, you choose hope and faith over falling into the abyss."

And so that is where we were. Sitting on the knife edge, precariously balanced on hope and faith.

But I have to admit, in Harry's last few days, doubts started creeping in. I think it was my sub-consciousness trying to prepare me for what it knew was to come.

My sister had sent a lovely new outfit for Harry for his birthday, but it had only arrived just around Henry's birthday, July 22. The last video we have of Harry is of him opening this gift. At the end of the video, I tried to hold the outfit up to Harry, but he fussed and pushed it away. Then he pointed to his toy school bus and wanted to hold and play with that instead. The outfit sat on our dining room table, I hadn't found time to take it upstairs yet. I remember walking past it once and the thought flashed through my mind, "That is the outfit I will put Harry in after he has died, because it will be new".

Immediately, I was angry with myself for the negative thought and I quickly "cancelled" it.

Thursday or Friday, I had a dream, or a waking dream, either while sitting outside with Harry or walking with him in my arms down the street, "This is getting too hard for all of us. It would be easier if Harry just dies. We'll be okay, Henry, Lydia and I. Lydia especially is so happy, she can cope. We can do it. It will be hard at first, but we can manage." I got so angry with myself for that thought. "What the fuck are you thinking, Cynthia? You know exactly how hard that would be. You know that it would not be easier than this. You do not want that". Again I quickly banished the thought.

But except for those few stray thoughts in Harry's final days, I really, honestly, right up till he passed over, believed he was healed.

Both Henry and I had this intense feeling that we just had to get through the weekend, and come Monday he would turn a corner and be healed.

I knew the vile black sticky stuff he was vomiting up had to all come out. It was the toxins, what was making him sick. We had to get it out. But I didn't know how. But I knew if we could just get it out he'd be okay. Or that was the very, very strong feeling that I had. Henry too, felt with certainty, that we just had to get through the weekend and Monday would be a turning point for Harry. The smell. It had a very distinctive smell. A chemical smell. Like all of the residual chemotherapy chemicals and the toxins were coming out. I will never, ever, forget that smell.

I wish I had known that that last night, Saturday August 2 2008, was the last night we would sleep with our wee Harry. I can still feel him between us, rolling between us, cuddling each of us. I remember at one point in the night, Harry was lying sideways across my tummy and chest. I stroked his head and whispered to him. "Daddy needs to feel you cuddle with him, Harry, go cuddle with Daddy." And he did.

I remember that last morning, the four of us in our bed. We can hear when Lydia wakes up and thumps out of her bed, hear her walking across her bedroom floor, hear her open her bedroom door. Harry always sat up and watched our door, with a big grin of anticipation on his face, eager to see his big sister. Lydia came bounding into our room, always the cheery morning person, "Good morning Hares-y-bares-y-boinga-boy". Henry got Lydia her morning bottle (yes, okay she still had a bottle at 4, we wanted to wean her off of it, but while her little brother was going through chemotherapy was not deemed a good time in our opinion!!!). Harry nursed and she drank her milk. Then I remember, so clearly, Harry sitting up and signing for water to drink. He drank from my cup at my bedside.

Harry still nursed, but to be gentle on me, he had started trying to wean himself his last two weeks. I know he really wanted to nurse, but he was holding back, to try to be gentle on me. In response, I started pumping to try to increase my milk supply and taking "mother's lactaflow" and other herbals to increase my milk supply. I was not going to deny him essential nutrients from my milk. I think he knew he was going, or that he had to go soon. So he wanted to be gentle on me. But I would have none of it. But in his last weeks he nursed less and less and as soon as he finished nursing, he would reach for his Dad. I was okay with that. I knew that Harry knew (and Harry knew that I understood) that he and Henry needed as much time together as possible. I was okay. It was okay with me, for him to reach for his Dad more.

And so in some ways. Our last full day with Harry was rather unremarkable. Except for of course the whole remarkable situation we found ourselves experiencing. It was just another day. Just another joyful, happy, beautiful, hopeful day with our Prince Harry.

2 August 2009 - We are Rainbow People

Harry's sign to us is a rainbow. I will tell you more about this in the coming days.

A few days ago, I asked Harry if he could send us some rainbows, just to once again let us know he is okay and always with us.

Saturday, we decided that we definitely wanted to go to church on Sunday. It was the first Sunday our church would be gathering after our month's holiday in July. I phone our florist to order flowers to have at church in memory of Harry. We choose a lovely summer bouquet called "Rainbow Bouquet". I phoned Russell and left a message, asking if he would be able to receive the flowers Sunday morning and if he could say some words of remembrance for Harry.

Oh boy, did he ever.

Russell did not know about our connection to Harry and rainbows. Yet, when we walked into the service, the 'theme photo' Russell had chosen to project above the alter for the service was a beautiful, bucolic country scene, a barn in a grove of trees, with a perfect double rainbow painting the sky above, and dominating the photo. Both Henry and I were stopped in our tracks when we saw the photo.

But more than the photo. Russell preached about a woman who once was very involved at one of his past churches. Her husband was not only an atheist, but rather rude and aggressive about it. He would criticize her every time she left for church. One of his favourite taunts was, "Oh are you going to visit your Rainbow People". He called us, us 'church folk' Rainbow People, because we are so darn optimistic, Utopian and so full of faith and hope.

Russell talked about how he wanted to disagree with this man, was ready to bring out his full arsenal of arguments against him, but was stumped. He had to agree. We are a Rainbow People. We are full of foolish, lavish, extravagant hope, faith, and belief that the world can be a better place, a place of love, of peace, of freedom, of harmony. Yes, indeed we are a Rainbow People.

And Russell's closing words were especially poignant, "Trust in Rainbows ... we are not alone".

Indeed, we are Rainbow People, we trust in Rainbows, and we are never, never, ever, alone.

Love,
Cynthia

August 1 Last Year 2008

2009-08-01T23:08:00.002-05:00

Friday August 1 2008

Lydia went to daycare all day - they were having a PJ party so she was quite happy to go.

Henry and I were home with Harry - today he started throwing up a black, yucky bile - sticky, smelly, awful stuff.

Good news - his bilirubin count was slightly down from Monday from 320 -> 306 - not huge but a glimmer that something is moving. But all day he could not keep anything down and even was vomiting up breast milk as soon almost as he nursed.

A very hard day - and nights are increasingly hard - Harry is so restless and really can't sleep much at all.

Lydia's beautiful thing was the PJ party at daycare.

Mine was Toni helping out with laundry and just dropping by to say hello and see how we're doing. It is such a huge help.

Henry's was chatting with Peter and Paula and getting the news about the bilirubin counts going down.

Saturday August 1 2009

This weekend is such a weekend of huge energy of change for my family. Exactly 4 years ago, 1 August 2005, my Mum's house burnt down - my childhood home. The very next day 2 August 2005, Henry, Lydia and I moved into our first house - our current house on Ruby Street. And of course, 3 August 2008 is Harry's Angel Day.

Harry got so sick so quickly. It happened so fast we both couldn't possibly see and comprehend what was happening. On July 18th we received the news that his chemo was no longer working and there was nothing more the oncologists could do for him. But at that time even they thought he might have months left to live. We certainly were not willing to just give up, simply because *they* had exhausted their allopathic options.

We were trying everything we could think of - intense Reiki, intense naturopathy, intense energy field work, prayer, prayer and more prayer, meditation, intense vitamin therapy. We would have tried anything for Harry, as long as it wouldn't have hurt him. We had just started working with a naturopathic doctor from New Mexico, who has successfully treated many rare and 'hopeless' cancer cases. She had sent us an intense liver detox for Harry. Her analysis had found that Harry was suffering from a toxic levels of heavy metals and estrogen. Around July 22 or 23 we had started him on a detox for this, for which he took about 10 different liquid medicines each day. Some of these we could give to him directly in his mouth by eye dropper. And after the first few days of getting used to it, he would open up so nicely to take the medicine.

The difficult thing, and I have read about other cancer patients who had a similar experience, it is nearly impossible to distinguish a successful detox from a worsening health situation. That is, patients who are successfully detoxing very often undergo the same set of symptoms as someone whose cancer is overtaking their systems. The fact that his bilirubin count had come down, against all expectations of his oncologist, gave us hope that the detox was doing something positive for him.

So we were working with two competing narratives. The one from the oncologists, which said that Harry was dying. And the one from the naturopathic doctor, who said that while, yes, Harry was very sick, he was also detoxing and the symptoms we were seeing, including the vomiting of the vile black substance was also a part of detox. I think we partially believed both narratives and so our only recourse was to simply stay positive, have hope and continue to believe that Harry could beat this cancer. Some way, some how, he could do it.

For about the last week of his life, Harry slept on and off pretty much most of the time, day and night. Henry and I simply took turns, 24 hours a day, every day, holding him. I can't remember exactly when, but in his last weeks he had started sleeping with us. It was gradual. It just got more and more difficult to, first get him to settle at 11:00 pm when he woke to nurse and then even to get him to sleep. So we just adapted by keeping him with us always. We would take turns sleeping really. He lay between us and he would cuddle with me for an hour or so, sleeping fitfully and they roll over, really throw himself onto his dad's neck - just cuddle in with all his little might, into his dad's arms and chest. He'd sleep with his Dad for an hour and then switch back to cuddling we me.

We know that, in those moments, he was telling us just how much he loved us. It was in the way he almost threw himself between the two of us, as if he couldn't bear to not be touching one of us for even a moment. He would especially wrap himself around Henry's neck, his arms, almost his whole upper body, wrapped like a wee scarf around his Dad's neck, to just be as close as he could possibly get to his Dad.

And I can still see him, sitting up in bed between us, silhouetted in the night shadows, doing his baby sign for milk in the middle of the night. He was such a little sweetie, he would first tap his chest to ask "please" and then ask for "milk". I nursed him his whole life, right up until the last hour before he passed over.

It was also, I think, thought I am not 100% sure if it was today or the day before, but I think it was today, because it was during the day and Lydia was not at home, that Harry gave Henry one of the biggest gifts he could give.

Harry could do a number of baby signs - "please" " thank you" "all done" "more" "milk" "where is?" "light" "hello / bye-bye", but he only ever said three words.

He started saying "Mum" quite early - at about 8 months. I wasn't sure if that was really what he was saying. I remember when he first started to crawl at 8 months. He would follow me around the house and say, "Mum-mum-mum". I was never sure, was he babbling? Just saying, "source of milk get back here"? Or was he really saying Mum? But he kept it up and later, it was apparent that he was indeed saying Mum to mean me.

The second word he said was not so much one word, as a catch all phrase for what he wanted - "dat dat dat". Harry was a great 'pointer'. From somewhere around 13 months old he started pointing to everything he wanted and saying "dat dat dat" - always leaving it up to us to guess exactly what "dat dat dat" was and pointing and saying "dat dat dat" more insistently until we picked up what ever thing it was he wanted. For example, often he'd point to a whole pile of toys and say, "dat dat dat" and get really indignant when we didn't figure out right away, which toy he was precisely pointing to - it was obvious in his mind!

His third and final word, was his last gift to his Dad. I am sure he gave it to Henry a year ago today.

I was sitting on the couch holding Harry and Henry came into the living room, ready to take over for a turn holding Harry.

That one and only time, I could just feel Harry work up all of his strength, and he reached up his arms from his spot sitting in my lap, up to Henry's waiting arms and, mustering every ounce of his wee strength, Harry very, very, distinctively said, "Papa".

It took so much effort for him to say it, to have the energy to say it. It came out with such force, but it was so clear, "Papa".

I remember Henry and I were both stunned. We both said at the same time, "Did you hear that? Did he just say Papa?"

He was only able to say it once. But I know he so clearly wanted Henry to know that he knew just exactly who he was and how special he was to him. He knew Henry was his "Papa".

July 31 Last Year 2008

2009-07-31T21:40:00.002-05:00

Thursday July 31 2008

Lydia spent the day at home. We all four went to the wading pool all afternoon - from 2-5 pm. Just held Harry and enjoyed the sun, blue sky, clouds and watching Lydia swim and play.

Cathy and Dr. Stoffman came by the house in the morning. Examined Harry and gave him a new feeding tube. They are trying to be supportive and are in their own way - but for them this narrative has only one ending.

Feeding Harry with carrot juice continues. Harry is getting better at taking his homeopathic medicine by mouth.

Lydia's most beautiful thing - for all three of us - was spending the afternoon together at the wading pool.

July 31 2009

Harry was really very weak by this time. He was really sleeping most of the time, though he would always perk up and sit up to wave to the Number 10 bus as it went by our house. He just slept in my arms all afternoon by the pool. Well, I should say, Henry and I took turns holding him and alternatively playing with Lydia in the wading pool. I sat in a lawn chair and just held him and told him over and over how much I loved him.

Always, those last two weeks, when I held him, I whispered to him, "You are so strong, you are so brave, my love, you can do it".

In my mind I was telling him he was strong and brave enough to get through the homeopathic detox and beat his cancer.

But I think I was telling him that he was strong and brave enough to jump to the other side when he needed to, when it got to be too much for him and he couldn't stay with us any longer. That he was strong and brave enough to just jump. And he did, but that story is to come.

When Dr. Stoffman and Cathy came by the house, they gave us a letter. It hardly registered at the time. Cathy came with me to the kitchen and handed me the letter. The letter was an official form from Harry's oncologist for the City coroner. It stated that he was expected to die at home very soon, and that an inquest was not needed when he did. Cathy is an amazing woman. She is one of the paediatric oncology nurses and she always knows exactly what to say and how to say it to make you feel better. She managed to give me this letter and explain what it was, but in such a gentle way. Nonetheless, I don't think I really understood what it was. She said to pull it out only when we needed it but to put it away and forget about it until then.

I remember looking at it. There it was in black and white, "Hendrik Venema is expected to die at home of primary rhabdoid tumor of the liver very soon". Signed and dated by Harry's oncologist.

I read the letter and cried and said to Cathy something like, "He can't die, not my baby, I can't lose him, he has to beat this. I don't know how but he has to. I can't give up hope". Cathy had tears in her eyes too and she gave me a big hug.

I was angry too, that they had given up on Harry. But I know they were just doing their jobs to the very best of their abilities.

I put the letter away on the desk in the dining room.

I can't tell you how much it broke my heart to be given that letter and see it in black and white. Hendrik Venema is expected to die at home very soon. But still I didn't believe it.

I believed then and I still believe now that miracles are possible. That we can jump from one path to another in an instant and jump from sickness to health. We are not matter, we are energy. Thoughts, intentions, move energy. Our intentions can heal. But I also believe that we are born into this life with a life mission. And Harry's life mission was to come for a short time, to touch many, many lives, to drop off a whole lot of love, and then to return to God. His life was exactly what it was meant to be.

It was a gift from God. He was a gift from Heaven. I know that. I know that especially because so many other people tell me what an incredibly amazing gift he was to them and how much he taught them and changed them.

My sweet Prince.

Love,
Cynthia

July 30 Last Year 2008

2009-07-30T22:26:00.002-05:00

I kept a journal over Harry's last 2 weeks of life.

I have wanted to post my entries and write about them, each day a year later, but it hasn't quite worked out.

But here is my entry for Wednesday July 30 2008

Jacquie Olson took Lydia to Lower Fort Garry today. Henry did Level II Reiki with Claude. I spent the day cuddling Harry and just being together.

Harry had a better night sleeping last night - nursed a great deal and drank almost a full sippy-cup of water.

He alternatively cuddled with me or Henry, shifting ~ every hour.

Today we cautiously think his eyes look less yellow - a little bit.

Dr. Hall said an increase in biliruben counts and a decrease in liver function is to be expected from detox. Waiting for Dr. Hall to call back and think about a schedule for IV Vitamin C and Iscador Injections.

Harry slept a lot all day, but I think his breathing was deeper and not as much coughing - hardly at all.

He had more carrot juice not beet and seemed to keep that down better. Just one little spit up with me all day, but a bigger one at 6:00 pm.

Harry is frail and thin - but who said detox would be easy? We can do this - we just have to stay so strong for Harry - keep the faith for our little boy. My mantra is, "I am Cynthia, mother of Harry, a miracle cancer survivor". [I repeat it to myself all day long, as I hold Harry].

Lydia's most beautiful thing today was going to LFG with Svava, Freyja, Jacquie, Kristin & Saskia.

Mine was having Toni come and sit with me and Harry and her offer of help with laundry today.

Henry's most beautiful thing was getting his certificate for his Level II Reiki.

Love Cynthia

Almost a Year

2009-07-30T11:41:00.002-05:00

I can't quite put into words what I am feeling these past few weeks.

A lot of anxiety, fear, panic, tears. But also, always, moments of joy and happiness too. And hope. Harry taught me how to always live in hope.

When Harry was sick, I promised him I would live in hope, hope that he was physically healed and that he had beat his cancer, until we knew otherwise, that is, until he drew his very last breathe. I promised him that I would fight for him, and never give up on him, until he drew his last breathe.

So that is what we did. Until his very last breathe. We were full of hope, right up until that very last moment.

That is one of the gifts of going through an experience like this with your child. You're pushed to the limits of your experiences. Each experience you have with a critically ill child is pushed to the maximum - maximum joy, love, hope, happiness. But also maximum grief, sorrow, pain.

One of the things that gets me throught the pain is remembering what it felt like to live so presently and daily and fully in love and joy and hope. It is a gift to have experienced those emotions so fully and deeply and completely.

As we wade through these last few days, far far too fast approaching the first anniversary of Harry's Angel Day, I try to reach back to that feeling of hope and take that feeling of hope with me forward into the future.

It is hard to feel safe enough to have hope for the future, when you first hand know that bad things do indeed happen to good, unsuspecting people. But the alternative? To live in fear and pessimism of all the things that *could* go wrong.

I know that to do that fails to honour Harry and the promises I made to him.

So we trudge on in hope. Hope that our hearts will find healing and true moments of joy will grace our lives again.

Love,
Cynthia

July 8

2009-07-08T12:14:00.002-05:00

After writing last night, I realized quickly that I needed to do some energy work to clear myself and re-focus on my intention of healing my heart. So I went upstairs to the attic and did another amazing Light Integration on myself, something I learned recently at a course in Chicago. I am always a little amazed at just how centered and balanced and cleared I feel after doing an energy integration.

I have always wanted to learn how to meditate. But despite week-long retreats to Ashrams in India and attendance at a variety of different yoga centres, I have not been able to even sit still and concentrate, let alone move into any sort of centred connection with the Divine Ground of Being. I suppose yet another gift from my journey with my wee Prince Harry has been that, having had my heart cracked open with love and grief, I have finally opened my heart and can sit in the quite of the night and feel my heart sing with love and light. I can't quite explain it.

And so last night, I sat still, immobile really, after my integration, and opened my heart and simply sat in peace and love, not sure for how long, half an hour, an hour maybe. It is in those really quite moments, I can feel Harry sitting right next to me. I can feel him place his hand on mine and lean his head against my arm. And we talk. He reassures me that he is okay and that we, Henry, Lydia and I will be okay too. I asked him to stay close to us, this next month, that we really need to feel him close, to help us get through this time.

I went to bed at 1:30, but I slept solidly and deeply until 7:30 and awoke feeling refreshed.

Then this morning, a good friend J can by and I did a light integration on her. We were working in our attic, and just when we were starting, J suddenly noticed that there was a perfect rainbow on the ceiling in the alcove by the front attic window, just behind where I was standing.

I smiled, and said, "Well hello, Harry".

I knew it was him. And he will be close to us this month. Giving us the love we need to walk through the pain.

Love,
Cynthia

p.s Happy Birthday Sarah!!!!!

July 7

2009-07-07T21:44:00.002-05:00

I feel sick and achy. Both Henry and I are weepy and frequently one of us is in tears these days. The picture of Harry on this blog site was taken a year ago yesterday. He had just learned to climb our stairs all by himself. How could that have been a year ago?

My memories of last July are overwhelmingly sad. The month started with such promise. We thought we were going to beat this thing. We were so hopeful that we were going to be able to move onto the next step in Harry's treatment - going to Toronto for a liver transplant. Were we ignoring the signs of recurrence? The signs were so like the signs of the original tumor - so minor as to be mistaken for normal growing pains. Harry was getting a bit more fussy in the beginning of July - but he was clearly teething new molars. I could feel the hard nubs on his gum just under the surface. See the red spots where the tooth was shifting, preparing to break through the surface. He was drooling more, I think, just like all of his other normal teething episodes. Little cheeks red with the flush of teething. How could a body be both shutting down and growing new teeth at the same time???

We had no room for anything but hope and faith that our son was going to beat this cancer.

We went for his last CT scan on July 14th. All four of us went together. Harry seemed so alive. He was so alive. I can still see him, so close to walking on his own, pushing a wee plastic shopping cart from the waiting room at paediatric CT scan down the long hall, past the CT scanner itself, the technician's room, the examination room, the family washroom. Laughing. Curious. A 'normal' 15 month old boy.

He cuddled in my arms as we talked with the anaesthesiologist, going over his case, his weight, how much he would need to be given to put him out just long enough for the scan. Lydia and Henry went to Tim's to get doughnuts. Lydia, wise beyond her 4 1/2 years, asked the doctor, casually, as she finished the last licks of her chocolate dip doughnut, "Will you inject the sleep medicine into a vein or will you use Harry's central line?"

I was so focused on the positive. That these results would be positive.

I stayed with Harry for the CT scan, draped in a leaded robe. He was very upset and did not want to be strapped to the table. I had to hold him down and soothe him while the doctor administered the first dose of the sleep medicine and wait for it to kick in. I felt terrified. I completely understood how scared he must have felt, lying strapped to that table, wrapped up to keep him immobile. He screamed in protest. Harry rarely cried out like that, it made it all the more heartbreaking to hear, because I knew just how scared he was, to cry like that. He seemed to be out and they started the scan, but the table had barely moved into the tunnel, when Harry woke up. The sleep medicine didn't seem to be working. I remember wondering if she had calculated the dose correctly. She had to administer a double dosage. Was his body fighting going to sleep for the scan because it knew the results?

I can't remember if I held his hands. Were they strapped by his side or above his head? I had to hold his hands above his head for chest x-rays. His tiny naked body, clad only in a diaper, sitting on this little bike seat like stool. I would have to hold his hands, his arms pulled above his head, as they strapped him, crying, into this clear plastic tube to hold him immobile for the x-ray. But this was not the x-ray. Funny, I thought I would never forget such a detail. But I can't recall if his arms were strapped in by his side or over his head for the CT scan. I do know I always put his Lovie underneath his head so he could feel it so close.

He was out for the scan - but never really completely under - despite the double dose of sleep medicine. I stood right beside the table, at his head, as the scanner whirled around him. I told him how much we loved him. How brave he was. How strong. How everything would be okay. It would be over soon. He just had to stay still while they took the pictures.

Soon enough it was over and I was able to pick him up and take him back to the exam room to recover and wake up from the drugs.

The technicians don't give you any indication about the results of the scan. While I can't recall exactly what she said. The anaesthesiologist made a comment before she left, something to the effect that maybe she wouldn't see us again, or that she would maybe see us again if we needed follow up scans. I think that was it. We felt so hopeful, thinking that it meant that the scan looked so good we wouldn't need another scan soon, because we'd be off getting Harry a new liver.

We went shopping at Winners after the scan. Lydia's pink swimsuit had, just the other day, completely lost its elastic all at once and was now no longer staying up! So we bought her a new 2-piece bikini. I bought 2 summer dresses. I think we bought Henry some shorts. We bought Harry a bath toy - a set of happy hippos that floated in the tub. We were a normal family, doing normal family things.

I remember waiting for the CT scan results. We felt so positive that week. We felt so strongly that Harry was done his chemo and would not need another round. We felt so sure that the scan would tell us that his lungs and lymph nodes were clear and the liver tumor was small enough that we could go for a transplant.

In retrospect, I suppose we were crazy to be so optimistic. Rhabdoid cancer does not work that way. But we could not be any other way. It was unthinkable that we would give up on Harry. We could never do that to him.

So in early July, until that horrible, horrible day on July 18th, when we got the CT scan results. We were happy, joyful, full of love and so optimistic for the future.

But it is hard to remember those last happy days. July 18th and all that happened so quickly after that day are what looms and lurks and overshadows all my memories. I can feel it stalking us.

The memory of the end.

I don't want to do this.

Oh God. I don't want to do this. I don't want to go through this anniversary. This hurts too much.

I don't want to go through those last two weeks of Harry's life. When he was so sick and dying. Though even then, right to the very end. We couldn't see it. Wouldn't see it. Couldn't see it.

I don't want to do this.

I don't want these memories.

I don't want this pain.

I just want my Harry back.

More from July 1 2008

2009-07-02T11:44:00.004-05:00

Here are a few more lovely pictures of Harry from July 1, 2008. In the evening, we went to the White Ridge Community Centre for a goodbye party for our dear friends, The Shuttleworth's (Leanne, Rolly, Lauren, Brooke and Abbey) - it is hard to believe it has also been a whole year since they moved to Vancouver - we miss them so much!!!!

Harry had a delightful time crawling on the grass with Daddy and playing with a ribbon with Mummy and Daddy.

July

2009-07-02T11:20:00.006-05:00

July is going to be a difficult month; there is no way around it. Spring has been okay. We have wonderful memories of Harry last spring – from the time we brought him home from the hospital until early July, we were so full of hope for his full recovery and he was so full of joy, laughter and love. Except for his feeding tube, it was difficult to tell that he was even sick. I remember people asking me in late May or early June, if he was done his treatments now. Oh would that that was true. Our days settled into a rhythm of normalcy – yes, which did included twice-weekly visits to Cancer Care Manitoba for check ups, blood work and transfusions, and hospital stays for up to a week every three weeks. However, that just became our new normal and was just a part of how we lived our lives. The memories of last spring are all wonderful memories – of living and laughing and loving with Harry.

Most days, Henry, Lydia and I are doing really well. I would say we have many more joyful days than sad days. Though those still visit us regularly. We laugh, we joke, we remember Harry. I suppose we have settled into a new equilibrium. That said, Henry and I have both been feeling a sort of exhaustion of late. It is a fatigue from carrying our grief, from having to walk with this burden on our shoulders. Fatigue as much from carrying the burden as from the knowledge that, while the burden will shift and ebb and flow, it will never, ever go away. Many days I feel really good, very balanced and centred. But nearly every day there is something that will remind me of Harry. Or we’ll have another experience – like Lydia’s final Kindergarten school concert – and the experience is always tinged in sadness – because we so keenly sense Harry’s absence. As we go forward in life, every major event (and many minor and seemingly inconsequential ones too), while joyful, will also be marked by sadness that Harry isn’t here with us physically. That he isn’t here to experience it with us and us with him. When these feelings of sadness come upon me, I try to send them away with love and stay focused on the present; the what is, not the what could have been. I send Harry love, wherever he is, what ever he is doing at Angel school.

I feel it most acutely when we are doing things with other children Lydia’s age. Many of her school friends, if not most it seems, have younger brothers just around Harry’s age. Lydia always looks so little and alone – lost and alone in a sea of other kids’ siblings. I can always just imagine wee Harry beside her – see his blond tousle of curls bob beside her, see him running with her, holding onto her hand, Lydia putting a protective arm around his shoulder. When we’re alone, Lydia always talks about Harry and includes him in her daily activities. It is at the same time comforting, as it breaks my heart.

July is going to be a difficult month of memories, because July is a month of memories of last times. All of the last times we did things with Harry. All of the times that we didn’t know were last times.

It started today. Today is July 1, Canada Day, and the day Lydia has been waiting for for months – the day the Vimy Ridge Park Splash pad and wading pool opened. I have been dreading today. We took Harry to the wading pool and splash pad for the first time a year ago today. We have lovely pictures of him and Henry and Lydia, testing out the sprinklers. Harry was excited, but cautious too. It was one of those precious days when we felt like any other normal family, taking their kids to the park.

I packed a picnic lunch for Lydia and I and we were at the park by noon today. The brave families with young kids, who need to be home for afternoon naps, were out. (I say brave because while sunny today, the high is only about 21 or 22C). We parked our red wagon and her bike, set out our chairs and towels in a grassy spot in the sun. I blew up Lydia’s pink floatty ring. Lydia dashed in the cold water. I gasped as the cold bit into my ankles. I preferred to sit in the sun and read and watch Lydia play in the water.

Of course, it never fails, a family with two young boys parked beside us. The two boys looked to be around one and two and a half – the younger a stark reminder of what Harry was like when he was first diagnosed and the older a stark reminder of who Harry would be now.

I feel so sad for Lydia, as she plays alone in the wading pool. Waiting for me to finish reading a page of my magazine to play with her. Waiting for Daddy to come from work to play with her. Alone and waiting for someone to play with. Alone and watching all of the groups of siblings playing together.

When Harry was born, people always asked me if that was it, now that we had our boy and our girl, were we done having children? I am not sure if it was prophetically or morbidly, but my response was always the same, a cautious, “No, I don’t think so, I think I want three children.” In my head, I continued, “What if one dies? I don’t want the remaining sibling to be an only child.” I always sensed, somehow, that it was Harry that might die, and it was always Lydia I envisioned as the only child left on her own when I said that. And there she is now, on her own, just like I never wanted for her.

She played with a school friend (who was there with her one year old brother) for a while. She played with some other kids from her school that she knew. When Henry came from work, we phoned up two of her best friends Svava and Freyja, and they and their Dad, Geir (one of Henry’s best friends) came and played with her. They are still there now.

We’ll get through today. We’ll survive Friday – July 3rd – which will mark 11 impossibly long months since Harry passed over. I think I’m just going to feel slightly nauseous and off-balance all month, as August 3rd approaches. It’s going to take a lot of prayer, meditation and energy work to stay balanced and clear. I don’t know what we’ll do or where we’ll be for that day. It is a holiday here. It won’t be much of a holiday for us.

On the joyful side, however, I do know that Harry was with us at the wading pool, crazy as that may seem. Harry has sent us rainbows a number of times since he passed over. The most striking of which was a double rainbow that we saw in our front yard exactly 24 hours after he passed over, that hung in the sky for an impossibly long time, over 10 minutes – despite the fact that it hadn’t rained and the sky was blue. When Henry came to the wading pool, the three of us, Henry, Lyddie and I, joined hands and ran through the sprinklers, laughing and squealing in delight as the freezing cold water pricked our sun-warmed skin. All of a sudden, after our first run through the sprinklers, Henry and I saw a rainbow – on the ground – we were standing in the middle of it – it was a perfect circle of a rainbow, surrounding us. It was Harry. He was here to play with us. We ran through the sprinklers and danced in the rainbow. And I know it was Harry, telling us he is right here with us, playing with us in the splash pad, running with us, laughing with us. It was one of those gifts of a moment, when time seems to stand still, when I know he is right here, we just can’t see him or touch him, but we can sense him so close. The moment passed, and the rainbow disappeared, but it is those gifts of moments that help us to keep walking on.

Love, Cynthia

Harry, Henry and Lydia at the Splash Pad, July 1 2008

10 Months

2009-06-03T13:03:00.008-05:00

Inconceivably Harry passed over 10 months ago today. It just doesn't seem possible to me that he has been gone for 10 whole months, nearly a year. I look at around-one-year old boys and think to myself, "Oh, that would be my Harry". But then I remind myself, "No, Harry would be over two now. He'd be so much bigger than that. He'd be walking and talking and running and riding his trike on his own."

Lydia assures me he does all of these things in Heaven, and I'm sure she is right.

Now, more than ever, time seems like such a strange thing. It feels alternatively like yesterday and like a long time ago that Harry was here with us and that he was so sick. I wonder if the surreal sense of this whole experience will ever go away? I still find it so hard to wrap my head around the fact that any and all of this has happened. I keep expecting someone to wake me up and tell me it was all a bad dream, none of it really happened. It's over, here, you can have Harry back now. I just shake my head. You're kidding, right? This is real? This really happened? My little baby boy really died of cancer? You've got to be kidding? None of this can be real, right?

I suppose I am getting used to this, this 'new normal' that we find ourselves in. The longing to see and hold and physically touch Harry is not quite so acute. I feel like we have settled into this new arrangement, the three of us, Henry, Lyddie and me, here in the physical plane, and Harry an Angel, doing his work with God. The funny thing is, we are still, and I realize always will be, a family of four.

When Harry first passed over I thought I was going to have to get used to being a family of three again. My sense of dislocation and disorientation at this thought and experience was immense and overwhelming. It is like trying to walk when the Earth has tilted on a wild angle. I guess you could do it, by learning how to walk holding your body at some strange angle, but it would never feel natural. We can never really "go back" to being a family of three again. We're not. We're a family of four. It's just that one of us is a bit further away. So it is really getting used to being a "family of four but where one of the kids has left home way, way, way sooner than expected". Harry will always be an integral part of our family. I truly believe that his soul lives on and he is simply walking with the Angels now.

It still takes getting used to, but not in the way that I thought it was going to. I don't have to "get used" to Harry being "dead". Harry has left his physical body, that body has been returned to ash. But that which was truly Harry, the light, the love, the immense joy, the spirit, that can never die. That has just changed form, or left the physical form. Its simple physics really. Matter and energy. First law of thermodynamics - energy can be neither created nor destroyed, it merely changes form.

So, while the physical possibility that was Harry here with us is no longer. Harry, the energy that was Harry, lives on. So it is more getting used to this altered arrangement of the four of us. And most days, I think we have. I talk to Harry every day, as I know Lydia and Henry do too. He is just so much a part of us that it only feels natural. I still mourn the loss of all of my dreams of how life would have been with Harry here with us. But I am learning to let those dreams go with love. To not hold any of us captive to those dreams of things that will not be. But instead, focus on creating wonderful dreams of the future that we can create.

An old saying goes something like, "You can give your children but two things, one is roots and the other wings." Give them roots to keep them grounded through tough times. Give them wings to soar above everything, explore new worlds and fly farther than we ever did.

I like to think we have given Harry both - his roots and his wings. We just gave him his wings a lot sooner than we had expected. I kind of think of him off at "Angel College". Studying with the angels, doing the work of the angels. I think he must be a very good angel.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Yesterday, a courier from Cancer Care Manitoba came by the house to pick up the remainder of Harry's unused medical supplies and a portable IV pump we've had since last August. I kept on thinking I should go by Cancer Care or the hospital and drop this stuff off. But I just can't bring myself to do it. I want to go up to CK5 sometime to see the two rocking chairs that were so kindly and lovingly donated by my Mum's Group and the Winnipeg Goldeyes Baseball Team in Harry's memory. But I just can't face going up there just yet. One day it will feel okay, I am sure. Just not yet.

Cathy, the paediatric oncology nurse, had brought the portable IV pump to the house a few days before Harry passed over. Maybe it was the Friday? It was either that day or Saturday. We had hooked up his central IV to give him some fluids, because he was having a hard time keeping anything down and we were worried about him getting dehydrated. Funny, I can't remember exactly. I think we had him on the IV from Friday to Saturday, but by Saturday, I noticed his belly was beginning to swell up again, like it had back in February when we first went to the hospital. My poor wee baby. He was so thin by this time. I wonder if he even weighed 15 lbs. It was heartbreaking to watch his belly swelling again. I couldn't do it. I just knew the fluids were going in but not coming out properly. I couldn't watch him bloat up again. So, I guess it must have been the Saturday night. The night before Harry died. I called Cathy and asked her to talk me through unhooking the IV, flushing Harry's central lines, and putting in the Heparin lock into the lumens. I had been terrified to do this. But I had watched the nurses do it so many times. I somehow knew I would eventually have to do this too. I unhooked Harry from the IV and then we went to bed with him for the last time. Though, we didn't know that then.

It took me months to organize all of the left over medical supplies. Some of them were returned quite quickly. I think Jodi took them away for us. The two feeding poles, the feeding pump, the cartons of formula, the feeding bags and tubing. Those supplies took up the entire top of our washer and dryer. The IV poles, one in Harry's room and one on the main floor, were fixtures in our house. A nuisance we had just leaned to integrate into our daily lives. But we also had boxes of feeding tubes, tape, syringes, alcohol wipes, tooth-ettes for washing Harry's mouth four times a day to prevent mouth sores, saline syringes, heparin syringes, bandages for his feeding tube, bandages and wipes for changing his central line dressing ... Extra netting to make the little chest bands I put around Harry to hold in / tuck in his central line lumens.

I had one day, last fall, managed to find the energy to put everything into one box. It was sometime in the new year, January or February, when I finally went through everything, placed all of the extra supplies in a couple of plastic bags and chose a few of each things to save, an extra feeding tube, some of his medicine syringes, some tape that I used to cut to make the bandage to hold on his feeding tube ... I put them all safely away in a box in his room.

Its kind of crazy. But I wish we had saved his 2 central line lumens. Cathy helped us cut them off right after he had passed over. We held him and carefully, gently, lovingly, pulled off the tape on his cheek holding down his feeding tube and pulled it out for the last time. Then cut off his central line. I guess Cathy must have taken it to dispose of. But I wish we had saved them. I don't know what on earth I would do with them. It is not like they were particularly attractive or anything. But they were a part of Harry and I wish I still had them.

And so now, with a ring of the door bell and a one minute exchange. The last of Harry's medical supplies are gone. There is room on the shelf in the laundry room. And another piece of 'Harriness' has been cleaned, organized, shuffled, and put away in our life.

Relay for Life - Prince Harry's Court

2009-05-27T15:21:00.003-05:00

If you would like to pledge to support our Relay for Life team, Prince Harry's Court just click this link below (you may need to copy and paste the link into your web browser):

http://convio.cancer.ca/site/TR/RelayForLife/RFL_MB_Winnipeg_?team_id=143850&pg=team&fr_id=3720

If that doesn't work, go to the "Pledge a Participant" page on the Relay for Life, Winnipeg web page:

http://convio.cancer.ca/site/TR?fr_id=3720&pg=pfind

and search for the team "Prince Harry's Court" - you should find us and get a link to our team page. You can either pledge the team or an individual participant.

If you would like to buy a Luminary in memory of Harry or someone else you know who has battled cancer you can do so at this link:

https://secure2.convio.net/cco/site/Ecommerce?PROXY_ID=3720&PROXY_TYPE=21&FR_ID=3720&VIEW_PRODUCT=true&product_id=1385&store_id=9642

if this doesn't work then go again to the Relay for Life page and look for "Buy a Luminary" in the Get Involved section on the left hand menus.

Here is the link for the general Relay for Life - Winnipeg web page:

http://convio.cancer.ca/site/TR/RelayForLife/RFL_MB_Winnipeg_?pg=entry&fr_id=3720&JServSessionIda010=mjvjb634h1.app33d

Thank you so much for your support!

Peace, love and walk on,
Cynthia, Hank, Lydia, Angel Harry and all of Prince Harry's Court

Rhabdoid Cancer

2009-05-27T14:31:00.002-05:00

I have not posted a lot of details about Harry's particular type of cancer. But I thought I would today.

When we first got the diagnosis of a 'primary rhabdoid tumor of the liver' on March 6th, 2008, we had no idea what were were up against. Initially, Harry's doctors thought he had an hepatoblastoma - one of the more common types of paediatric liver cancers. Complete testing of his biopsy sample proved otherwise, and resulted in the diagnosis of rhabdoid cancer instead.

In truth, during Harry's whole journey with cancer, I don't think I really knew what we were up against. If he had been diagnosed with a Stage 4 Hepatoblastoma he would have had about a 20% chance of survival. When we were given the Rhabdoid diagnosis, I recall asking his doctor, "Okay, so what are his chances now?" I guess the doctor's couldn't face telling us, "Somewhere between 0-1%" so instead they said, "No better than his odds were with Hepatoblastoma".

One of my first nights home from the hospital I recall doing a google search on 'rhabdoid cancer'. All that came up were links to obscure journal papers and the Rhabdoid Kids site. You would think, having just finished a PhD, I would have been all about digging into the research side of this disease. But my instincts told me otherwise. I read one journal paper and just couldn't digest any of the information. I switched to the Rhabdoid Kids site, read about a few Rhabdoid kids, but could not bring myself to even open the Rhabdoid Angels page. I just didn't have the energy to read about other kids, I could only muster the energy to focus on Harry.

My intuition where Harry is concerned has been uncanny, every since he was first conceived. And I so clearly recall every ounce of my body saying, "Stop, stop looking at web sites. Don't focus on the science of this disease. That is not your job this time. You need to focus on healing Harry, taking care of Harry, loving Harry. You are not meant to focus on the technical side of this disease".

I listened to that internal voice and I didn't do any research or reading about Rhabdoid cancer again till after Harry had passed over in August.

Once Harry had died and I had hours and hours of empty days to fill I started to obsess over reading everything I could about Rhabdoid Cancer.

I think I am glad I didn't know just how cruel this disease is while Harry was alive. I don't think I could have had the courage to fight and maintain my hope and optimism had I know just how poor his chances really were.

Rhabdoid cancer is known as the rarest and most aggressive of all childhood cancers.

It was first discovered in the kidneys in 1978. In 1991, doctors realized that a class of brain tumors was actually the same cancer and so classified the brain tumor version, AT/RT or Atypical Teratoid / Rhabdoid Tumor. Basically, now the cancer is classified as either AT/RT or non-CNS MRT (Malignant Rhabdoid Tumor). Renal (kidney) and AT/RT are the most common variants of this cancer. 'Officially' Harry's cancer was an extra-Renal, non-CNS MRT of the liver.

A presentation I found on the web, put together by a doctor in St. Louis in 2007, listed a table of all of the published cases of primary Rhabdoid liver cancer that the doctor could find.

There were 25 cases listed.

Yes, that is it. 25 cases documented by 2007 in the entire english language academic literature. Of those 25 cases, three had survived, 2 girls and one boy. For some reason, girls have a slightly higher survival rate. So, since not all kids who have rhabdoid liver cancer will have a paper written about them, Harry choose a very exclusive club - there have been maybe 50 kids ever in the world with this type of cancer.

Go figure. My baby doesn't just get cancer, no, he has to get the rarest and most aggressive variant of the rarest and most aggressive childhood cancer of all.

The only path to long term survival is to remove all of the cancer and that means surgery. Chemotherapy alone is not enough, the primary tumor HAS to be surgically removed for survival. Rhabdoid cancer is treated with the strongest chemotherapy they can give a person. Most adults given the chemo Harry had are unable to move out of bed for days, they are so sick. For those kids who live long enough to start chemotherapy, the usual pattern is that the cancer responds well at first, but it is so damn smart, that it pretty soon figures out the chemo and relapses. Most children die with weeks of their first relapse.

Because the cancer grows so quickly, almost all kids exhibit very few symptoms until a few weeks before diagnosis and then, like Harry, present only with mild flu-like symptoms. Most kids are diagnosed at Stage 3 or 4. Many kids don't even survive long enough to start chemotherapy.

Given how extensive Harry's tumors were when he was diagnosed, by all rights, he should have died that first week in hospital.

So if you ever wonder whether we managed a miracle with Harry, the answer is an unqualified YES. That Harry survived to actually start chemotherapy, that he responded so well, that he smiled and laughed and bounced through each brutal round, that he got to come home, that he got to celebrate a first birthday, that he got to experience one summer as a little boy was all a miracle.

Strangely, I take some comfort in Harry having Rhabdoid cancer. In a strange way, it would been more difficult, I think, had he died of a more common cancer, one that most kids survive. Then we would have been left asking, "what did we miss, what did we do wrong". With Rhabdoid cancer, I know we really did everything we possibly could do for Harry. We gave him the very, very best shot we could.

But I sense that Harry choose Rhabdoid cancer, if it is possible to say such a thing, because he knew he had to come and give us all this love, but then go back to God. He had to choose a cancer we couldn't possibly have beaten.

I always said that whatever child followed Lydia was going to have to do something 'big' to not be caught in her shadow. Well, this wasn't quite what I had in mind. But Harry sure did do something big with his short life, of that there is no question.

Peace,
Cynthia

Relay for Life 2009

2009-05-20T15:59:00.002-05:00

Henry, Lydia and I will be leading the team "Prince Harry's Court" at this year's 2009 Canadian Cancer Society Relay for Life, on Friday May 29th.

This year's event is being hosted by the Winnipeg Goldeyes Baseball Team, at their stadium at the Forks, in downtown Winnipeg. The husband of a friend, Andrew Collier, is the GM of the team. Back in March he asked us if he could talk about Harry's story on his GM blog and as a way of promoting the Goldeyes support of the Relay for Life. Of course we said yes. At the time, that nagging little voice in the back of my head was saying, "You know you should be doing the Relay this year in honour of Harry, don't you?"

I just didn't feel I could do it this year, after being at the Relay last year with Harry. But I kept on having this sinking feeling, which I am getting used to now, that we should be doing it this year.

Then a week ago, the organizing committee co-chairs for the Winnipeg event emailed us and asked if we would like to cut the ribbon to inaugerate the event this year at the opening ceremonies, in honour and memory of Harry.

Of course we said yes. And, of course, I decided to listen to that little voice, (damn, why is she always right?) and participate in the event in honour of Harry.

So, though we only have a week to get organized. I know our amazing 'community of love' will be right here with us.

I will post more tonight on how to either join our team and particpate along with us in the Relay for Life as part of "Prince Harry's Court" or how to donate to support our team.

Love,
Cynthia

Mice and Angels

2009-05-05T11:13:00.014-05:00

We've had mice in our house since November 2007.

It started with three mice who moved in and decided to set up house in the bottom of our linen closet in the upstairs hallway. They must have thought they had found Nirvana for the winter season. They'd begun making a nice nest in an old swim towel and had found the mother-lode of food to sustain them for the winter - two of those fabric tube, grain-filled heating pad things, that you dampen and heat up in the microwave to wrap around your neck to soothe sore muscles.

Scared the living daylights out of me one evening when I went to get a towel from the linen closet and one of them jumped out at me.

I immediately bought a couple packages of wooden mouse traps, set them with peanut butter and put them in the linen closet. In quick succession I killed two of the mice, but the third one proved to be more crafty. I took everything out of the linen closet and washed the lot and cleaned out the closet with bleach. The third mouse wisely decided to abandon that winter home, but I couldn't figure out where it had gone. I set traps around the house, but never saw it again, and didn't see evidence of mouse droppings anywhere either.

I naively hoped she had just decided to seek winter refuge elsewhere. Ah, not so, likely not so crafty as cautious due to her 'delicate condition'. Yep, I'm pretty sure mouse number 3 was preggers. She must have gone into hiding somewhere in the walls, but we didn't see her or her offspring again for several months.

Many months later, after Harry had passed over, I was telling a friend of mine about the mice. Mariah practices Reiki and has many wonderful reference books in her studio on different aspects of Spirit. One book we decided to check out together after discussing the mice, on the symbolic meaning in our lives of the appearance of different animals.

Well, according to Mariah's book, the appearance of mice in our homes can mean, among other things, that we need to pay better attention to seemingly insignificant details in our lives.

I figure Harry's cancer may have started growing sometime around November 2007 ... little details that need better attention.

I can't recall exactly when we started to see the mice again. Or not so much see the mice, but rather see their telltale droppings around the house. But I am pretty sure it was sometime in January, just before first taking Harry to the hospital. This time the droppings were always on the main floor, in the kitchen, behind the bench in the front hall, behind furniture in the living room.

The only place we ever again found mouse droppings upstairs was in Harry's room. Really. Poor wee thing. I remember in January of 2008, when I would get up to nurse him in the night. After he was done and we were having a snuggle in the rocking chair before I put him back in his crib, he would sometimes point to the end of his crib.

Silly me, I thought, "Oh how clever my little boy is, pointing to his crib to tell me he is ready to go back to sleep".

He might have been, he was a very clever little boy!
But he also very well might have been saying, "Mummy, look, did you see the little mouse in the end of my crib?"

I'm really glad he was always safely ensconced in a sleepy sack in his crib!

Now, I know for certain that we never found any mouse droppings in his room BEFORE we took him to the hospital. So really, it is conjecture on my part that he saw mice in his crib at all, then. He really might have just been asking me to stop snuggling him and let him get back to sleep. I'll admit, I sometimes held him long after he had finished nursing. There is nothing more peaceful and beautiful than listening to the night sounds of your home, with your family safely tucked into their beds, with your precious little one asleep in your arms. I would sit and drink in Harry's smell, always telling myself to treasure these nights he and I had together.

I didn't have much time to worry about the mice when Harry was diagnosed. I had a number of traps set around the main floor of the house, but didn't have much luck catching anything.

But they were visiting Harry's room, evidence of which I found in April, after he was home from the hospital. He had been given a number of lovely stuffed animals in the hospital - a large number of different 'big cats' in particular. Until this time I hadn't had many stuffed animals in his crib, but given that he was over a year and well able to move all around his crib, I had set up a line of his 'big cats' at the end of his crib, to watch over him.

Again, back in his room and up to nurse in the night, Harry again pointed to the end of his crib one night. Too tired and unfocused in the night, I had tucked him back into bed and he had fallen right back to sleep, as he always did. But the next morning, when organizing his bed, I found a mouse turd in amongst the stuffed animals. Yuck. As if dealing with cancer weren't enough, my poor dear, having to deal with mice in his room as well, to top it all off. What an indignity!

Well, those stuffed animals came out of his bed right away and into the wash. Bleached Harry's floor and set several traps in his room, notably by the heat register and under his crib. Don't think I caught anything, but didn't see any more mice droppings in his room, either.

Over the next year, from last April till this March, I have set upwards of 20 different traps in the house. We bought an electronic mouse trap and set that in the basement, managed to kill one mouse I think. We bought those useless 'white noise' things that you plug into your wall sockets, which are supposed to emit a high frequency noise to keep mice away, and put them all over the house. They don't do a damn thing, by the way.

I have refreshed the peanut butter numerous times - the mice just licked the traps clean, left some poop to say thanks for dinner, and went on their merry way.

I tried setting the traps with bacon. The mice carefully removed every last trace of bacon without setting off the traps.

I have, over the past year, killed maybe five, six, or seven mice. Obviously the slow or less dexterous ones. In late February or early March this year, I noticed the mouse activity was getting really crazy. We were now starting to see them running about the house, damn buggers were getting bold as anything, coming to clean up the crumbs under the dinner table about fifteen minutes after we finished dinner.

I was reaching the end of my rope. I was so sick and tired of those damn mice!

On Sunday March 22, I was up working on email after putting Lydia to bed. Henry had just left the day before for Amsterdam. Within a five minute period I saw two different mice run across the dining room floor. I had really had it.

At my wits end, I cried out, "Okay, Harry. Mummy needs your help." "I get it, mice mean pay attention to details. I got the message, I paid attention to the details. We're done, right? We don't need the message any longer. Please Harry, Mummy is so sick and tired of these mice. Can you help me? Can you make these damn mice run into the traps, whatever? Can you help me finally get rid of them? I promise, I'll pay attention to the little details from now on!"

Around Christmas or New Years I had killed a mouse in his room. It was one of the things that finally prompted me to seriously tackle cleaning up his room.

Attention to details.

In the month after he passed over last year, I had washed up a number of loads of his stuff, clothing and bedding, and it was stacked on his chair and all in his crib. I hadn't had the energy to do anything more with it. Well, the mice had been having a field day in his room / crib and there were lots of droppings there. So I had re-washed everything in his room, pulled out all the furniture and bleached the floor. But this time, I as well scrubbed his crib, scrubbed off dirty finger prints, ours and Harry's, scrubbed off long-dried up spit-up from the cracks and crevices. I finally put all the clean things away, put all of Harry's clean clothes back into his clothing cupboard. Cleaned up most everything in his room, there is just a pile of mementos on top of his clothes cupboard that I have to figure out how to save and bottles of left over medicine, that I am not sure what to do with.

I had left two traps set in his room, thought neither of them had any bait set in them.

And once his room was cleaned up I hadn't seen any more droppings upstairs. Until late February, or early March, when I had also seen them in our room one night!

Lydia, by the way, has insisted on keeping her bedroom door closed at all times since we first found the mice in the linen closet way back in November 2007. I have never, ever, seen a mouse in her room, nor have I ever found droppings in her room, anywhere. Not in her closet (I have thoroughly cleaned it out several times), not in any corner or under any pile of toys. Nowhere. Nada. Nothing.

So, back to March 22.

Monday March 23, I am not sure why, I decided to check the traps I had left set in Harry's room. I looked under his crib and low and behold. There was a newly-dead, big fat (possibly pregnant) mouse, dead in the trap under his crib. I yet again, bleached Harry's bedroom floor.

Okay, I thought, are you going to help me Harry? It seemed somehow like a message from Harry. To find a dead mouse under his crib, caught in a trap that didn't even have any bait set in it.

So, I decided to try again. Tuesday, I cleaned up the basement (in preparation for our trip, and concerned about spring flooding, I wanted to make sure that everything of any value in our basement was at least 6 inches off the floor). A few weeks ago I had noticed that the mice had gotten into a bag of grass seed, so I painstakingly swept up every last seed and made sure the basement was spotless. And set 4 more traps and a water trap.

Then I bought yet more wooden traps at the corner store across the street.

I had brought the electronic trap upstairs a few weeks ago, filled it with peanut butter. The mice were going crazy sniffing the peanut butter from the outside, as evidenced by the droppings by the end of the trap, but none of them were willing to go INTO the damn thing. Nonetheless, I refreshed the peanut butter in the electronic trap and set a wooden trap just by the end of it. Set three wooden traps in the kitchen and two in the mud room. I also decided to try another trick I had read about, tied a piece of nylon stocking to the bait area and put the peanut butter on that, supposed to give more surface area, mice are supposed to tug it and set off the traps.

Wednesday night, March 25th, three days after my plea of help to Angel Harry, I killed my first mouse at about 9:00 pm. I heard the trap snap in the kitchen. Wow. Cool. Five minutes later another trap went off. I swear to God, I killed five or six mice that night. Couldn't get any work done. Every time I sat back down at my desk in the dining room another trap snapped off and I had another mouse to dispose of. But not just in the wooden traps. I zapped three mice in the electronic zapper as well. I gave up trying to get any work done by 11:00 pm, had just settled down in bed, when I heard yet another 'snap' downstairs and there was another dead mouse.

Okay, this is interesting, I thought. Next night, same thing. I kid you not. I killed another five or six mice. I started a 'dead mouse' collection jar just outside our side door, nestled in the snow at the top of the stairs. At one point Thursday night, I heard two traps go off in rapid succession in the kitchen. I went in to check, damn. Two empty traps. One of the crafty ones. Then I noticed movement at the bottom of the kitchen cupboards. The mouse wasn't dead, but it had hurt its leg trying to get away when it had set off one of the traps. Thinking fast, I grabbed a Tupperware container and trapped the injured mouse underneath it. And went to bed. Hoping it would just be dead in the morning.

It wasn't. I had to drown it. Lydia, ever helpful, had see the overturned container in the kitchen - I had told her not to touch it, because there was a mouse under it - she suggested I get the big butcher's knife and cut off its head. Wow. Didn't know she had it in her.

Friday night I killed at least another mouse, maybe two. All in all, over three nights I killed somewhere between 11-14 mice. I lost count. Five or six were pretty small, babies really. Caught two big fat ones, Mommas maybe? And another batch of older, more crafty ones.

I swear Harry heard me and was helping me. Why else, after a year of trying, was I able to kill so many mice in such a short time? Maybe the nylon was making a difference? But why was the electronic trap working after lying dormant for many months?

That weekend, I cleaned up the floors through the house, yet again. On Sunday the 28th, Lydia and I left for France. I left three traps set in the kitchen, one in the dining room with the electronic trap, and two in the mud room. I figured if we still had mice, we'd see lots of droppings when we got home, after they had had three weeks of freedom to run wild around the house.

When we got back from France. Nothing. Not one dead mouse the whole time we were gone. But NO droppings either. Anywhere. Seriously. No droppings under any furniture, in the kitchen, dining room, mud room. Nowhere. Nothing.

I'm not 100% sure that the mice are really gone. But since getting back from France. I have not heard or seen a mouse. I have not seen any mouse droppings. I'll keep the traps set. But I really believe my little Angel Harry heard me and helped me out.

I am considering very carefully what I should ask him for next time!

Interestingly, Lydia has started keeping her bedroom door OPEN ever since we came home from France. She has always seemed to have a level of communication with Harry that I don't quite understand. She told me it's okay to keep her door open now.

Love,
Cynthia

p.s. for those of you who might be wondering, no mice do not cause Rhabdoid cancer. Yes, I wondered that two, and asked the doctors at one point, they reassured me, there is no way the mice caused Harry's cancer.

39 and Holding

2009-05-01T17:37:00.002-05:00

Today is my 39th Birthday.

I have never worried about turning 40 before, but somehow after the year we have had, 40 feels like a huge milestone, both good and bad. But, I guess I have a whole year to worry about turning 40!

Last year, Harry just made it home from the hospital for my birthday - he had been in for a few days for a blood transfusion and a bout of febrile nutropenia (fancy word for fever due to very low white blood cell counts, one of the many fancy terms we learned last year), in his recovery phase from his third round of chemotherapy.

Gareth and Kathleen came by with a lovely chocolate cake to help us celebrate.

Lydia made me stay in bed an extra ten minutes this morning so she could put my presents on the dining room table for me, just like I do for her. She made me a lovely picture / card, which she even wrote "Happy Birthday Mummy" and signed it from her, Daddy and Harry. She also made me a paper bracelet. What a sweetie. What would I ever do without her, she brings such pure joy to our lives.

Henry has ordered me a cake this year, a first! Some family and friends will drop by this evening to join us for cake.

I know our angel Harry is going to be right here with us. Wishing me a happy birthday too.

Love,
Cynthia

Bike Riding

2009-04-28T21:48:00.002-05:00

Tonight was a VERY big night for Lydia.

Last Friday, we took the training wheels off her two wheeled bike. We were going to do it last August. But of course, life had other plans for our August last year and we never got around to working on teaching her how to ride a bike.

As soon as we were home from France, one of the first things she wanted to do was get her bike out of the storage shed. And on Friday, Henry took off her training wheels. We've been running up and down the side walk with her most nights since then, and have spent a few nights at the school yard as well, practising on the playground.

Well, tonight Lydia and I rode her bike to Aubery Park for some fresh air after dinner (and before the "Dancing with the Stars - Elimination Reveal"). We played for a while with a little girl from the neighbourhood. Then, before heading home, Lydia wanted to give riding all by herself on the grass a try.

Well, I lined her up with a good line of sight across the grass, got her going, and then let go ... and SHE DID IT! She rode all the way across the grass all by herself, peddling and steering all the way. And she didn't fall! I cannot tell you how it made my heart sing to watch her do it! It was just amazing. It really was one of those moments I'll never forget as her Mum.

Just to be sure it wasn't a fluke, we tried it two more times across the grass. And indeed, she rode along on the grass without falling two more times. Both of us feeling elated, we biked home, me just holding onto her seat, as she peddled and steered along the side walk.

I am sure within a few weeks we'll have her riding on her own on the sidewalk as well. But what a wonderful accomplishment for her after less than a week without training wheels!

Love,
Cynthia

Forgiveness

2009-04-23T11:42:00.003-05:00

I am a little bit less angry today.

I think I need to cry more. I think I have been, unknowingly, holding in too many tears. I thought I had been crying enough. But I have such a weight in my chest, a heaviness between my breasts, that I have been holding since Harry passed over. I think that might just be the weight of all of my yet un-shed tears. I have cried a river but I think I am holding in an ocean.

So, today I resolve to cry more. To let out my fear and anger and bitterness. To try, once and for all, to let it all go. I know it will take time, to drain this ocean. I cannot unleash it all at once. The rush would be overwhelming. So I have to let it slowly trickle out.

In a recent conversation with Kimberly, my energy field-work teacher and guide, she told me that when she was working with Harry a few weeks before he passed over, his main concern with dying was that we would not forgive him for doing what he had to do. That we would not forgive him for going, for dying. He had done all he had come to do but he wanted, needed, to be sure we would be able to forgive him before he could pass over.

In that conversation, Kimberly asked me if I had even been angry at Harry for getting cancer.

At the time, I had answered, "No." And I can honestly say that during the time Harry was sick, it never occurred to me to be mad at him for getting cancer. I was too focused on healing him to waste time being mad at him. I sure was mad at God at times and I was mad at myself, for whatever I may have unknowingly done to cause his cancer. For not exercising enough, maybe not eating healthfully enough when I was pregnant, for putting him through too much stress in the womb. If that is even possible. But I was never mad at Harry. Overwhelmingly, I have only felt love for Harry.

But, yesterday in the kitchen, I realized I do, on a deep, unconscious level, I do experience a kind of irrational anger at Harry for getting cancer and dying. And at my Dad for getting cancer and dying.

The only thing that makes sense to me, to explain suffering in our lives, is that in some way, our soul chooses with God before we are born, what major things we want to experience in our lives here on Earth. I don't mean this in a 'pre-destination', we-have-no-free-will kind of thing. I am not sure exactly how I mean it. It is just that suffering as a primary way we can experience and learn is the only way I can make sense of suffereing.

By this line of reasoning, it only makes sense to say that Harry choose to come and experience the life he had, to come for a short time for an intense love experience is how I like to think about it. To believe this helps me make sense of this experience.

But then, it does lead to an experience of anger.

"Dammit, Harry, why did you choose this? Why did you choose to come for such a short time? Why for this experience? Why couldn't you have chosen to come for a long, long time? To be with us for a full, 'normal' human lifetime?"

In the kitchen, yesterday, I yelled at Harry, "Today, Harry, Mummy is very angry at you for dying. Today I do not forgive you. Today I am just completely angry at you for leaving us".

I went to the U of M for the first time since getting back from France and tried to work, to clean up email, to jump-start my journal paper. And of course I wrote my blog posting.

When I was walking home from the bus through Wolseley yesterday afternoon. A quote posted on the side of St. Margaret's Anglican Church on Westminster caught my eye.

I am constantly amazed at the coincidences that have occurred in our life since Harry got sick. Both Henry and I have commented on many occasions, how we have been constantly amazed at how what ever we have needed has just seemed to materialize when it was needed. A saying, a hug, a friend, a message, a song. Maybe it is true what the sages say, there are no coincidences in life, only the Universe giving us exactly what we need whenever we need it, if only we are open and willing to receive.

Well the quote on the side of St. Margaret's stopped me mid-stride. It was from Dag Hammarskjold:

"Forgiveness is the answer to the child's dream of a miracle by which what is broken is made whole again."

I am pretty sure I have a broken heart. I know that is generally just used figuratively and that it is not something that could be 'detected' by modern medicine. But my heart feels broken all the same.

I guess working on forgiveness is the first step in making whole my broken heart.

In light and love,
Cynthia

Angry

2009-04-22T12:34:00.003-05:00

Today I am so angry.

I haven't felt a lot of anger throughout this whole experience with Harry, which may be surprising. Maybe because I know anger won't get me very far, it doesn't do much good to feel angry. I am not sure why I finally feel so angry now.

We got back from our trip to Paris late Monday night.

I suppose coming home has triggered my anger. Lydia was thrilled to be back home, to see her room, to get to see her friends at school again. I dreaded coming home. Walking back into our empty house just places in such stark and clear relief everything we have lost. That Harry is not here. That he is missing, screams from every room, every empty room.

On the upside, I know for certain that in order to stay in our house, I need to have it renovated. I can't stay in our house and have it stay exactly as it was when Harry was sick. I can't keep coming home to the exact same place where he died. At the same time, I clearly know that I don't want to move. That would only be running away. We could leave here. But then Harry would just be dead and we would be in a different house - he'd still be dead. Nothing is going to change that. I love our crazy old house. For better or worse it is home. It is not my dream home, in fact it has almost none of the 'must haves' that were on my list when we were looking for a home, but it is somehow the home we are meant to be in. I just knew the minute we walked in that somehow this was our house. I could immediately envision us living there. But I need it to be a different space. A space that still holds my memories of Harry, but that does not freeze us and hold us captive in the past.

We're still somewhat on Paris time. We all woke up with the sun at 6:30 this morning. Henry and Lydia went downstairs and I stayed in bed an extra half an hour. I didn't really sleep. I lay and thought about how differently the morning would start if Harry were here.

Harry should be 2 now. Since he was born, Lydia always wanted to share a room with him. When we bought her big girl bed, almost three years ago now, we bought a bunk bed, with a trundle underneath. The bunkbeds were supposed to be for Lydia and Harry. I remember when Harry got sick thinking, "Harry can't die. I've already bought his big boy bed. He has to turn two and sleep in his big boy bed with Lydia".

But Harry did die and he'll never sleep in his big boy bed.

If Harry were alive, we'd have celebrated his second birthday by setting up the bunkbeds. He'd get the bottom bunk and Lydia would get the top bunk. Harry's room would become their playroom and they would share Lydia's bigger room. That was the plan, anyways.

I lie in bed and I dream I can hear them giggle as they both wake up. I dream I can hear Lydia say, "Good morning Hares-y-bears-y" and I dream I hear Harry laughing in response and say, "Morning Lydee". I dream I hear two set of feet scamper across their bedroom floor, to the door, and down the hall to our room. I dream there are two blond heads coming into our room, Lydia holding Harry's hand, clinging to their respective lovies in their other hands, with two round faces peering over the edge of the bed at me, two sweet voices saying, "Mummy time to wake up".

I lie in bed and dream of what will never be and I listen to the hollow sounds of Henry and Lydia, just the two of them, starting the day together downstairs.

It was after I took Lydia to school today and was doing up last night's dishes in the kitchen that I really got mad at Harry for dying. One of his pictures sits on the windowsill that I look at from the kitchen sink and I yelled, really yelled, at his picture this morning.

"Mummy is so fucking angry at you, Harry."

"I am so angry at you for dying. Why did you choose to die? Why did you not choose to say here with us? Daddy and Lydie and I, we need you here. Why did you die?"

"I am so angry at you. I am so angry at you. I am so angry at you. I am so angry at you for dying." I yelled over and over and over at his picture.

The tears were floing fast and furious as I yelled over and over at him.

The thing I am most angry about is having to feel what I feel. I don't want to feel this loss over my son. I'm so angry that I have to experience this feeling. That I have to carry this fucking feeling of loss and emptyness with me forever.

"I am so angry at you for making me feel this way, Harry. I don't want to feel this way. I don't want to feel this way. I don't want to feel this way." I collapsed in a crying heap on the kitchen floor.

Not the most productive way to start my first day back at work.

That was the thing that scared me the most when Harry was first diagnosed. Actually, even before we knew his actual diagnosis. The very first Friday and Saturday nights in the hospital, I pleaded with God, "Don't make me do this. You can't make me do this. I cannot go through my son having cancer. You cannot make me live through my son having cancer. I can't do it."

And when we got Harry's grim diagnosis, that was the thing I dreaded the most. It wasn't him dying, exactly, that I feared the most. It was the having to live after he died that I feared, and still fear.

The day we got his diagnosis. I knew exactly how it was going to feel if he died. I had lived with grief and loss and longing and anger over the death of my father for so much of my early life. My earliest memories, my earliest consciousness, is of loss. Of knowing that someone was missing. Of questioning, "why did my Daddy die?" Of anger, "why did Daddy have to die?" Of deep sorrow, "why did I never get to know my Dad? Why did he have to die before I even had formed any memories of him" I have missed and longed for and grieved a whisp, a shadow, something I don't even remember, my whole conscious life.

Ah, not this. Not having to feel this, now, too, about my son. My son who I barely got to know, over his 16 all-too-brief months. Not having to carry this, this second hole in my heart. How can a heart keep beating with such a big hole?

This is what I am angry about. Not so much that Harry died. But that I have to feel and experience this suffereing. It sounds childish and selfish really, when I put it into writing. But there it is.

I know I have to figure out how to live without fear. To not be scared to live. I am so scared of forgetting Harry. It is the reason I am so compelled to write down my memories of Harry. To write it all down so that I won't forget. Part of me wants to freeze everything. Make no new memories. Keep everything exactly the same. If in some way doing that might capture Harry and keep him here. In fact, I find my memory is so much worse since Harry died. I forget little things I always would so easily remember. As if my mind can't make room to store more memories, it's full, you see, just keeping the memories of Harry. I fear moving on, if moving on means forgetting Harry. I fear moving forward, because what if I do and then I find out that DOES mean forgetting Harry. How could I ever forget my beautiful, beautiful, sweetest blue-eyed Angel?

I'm angry that Harry is no more than a collection of 40 minutes of video clips. A picture that his sister holds as a place-holder of sorts in a family photo. Another whisp, another shadow.

My heart needs for me to figure out how to move forward and to live, holding my memories alive, but not in fear. I am not sure how to do this. I suppose this is one of my next challenges.

Peace,
Cynthia

Happy Birthday Harry

2009-04-04T03:39:00.004-05:00

Today, Saturday April 4th, is Harry's 2nd Birthday.

We are in Paris, France. Visiting my sister Sarah and her family, husband Christophe and 2 children, Luisa who just turned 3 in March and Roland, who will be one in May.

The weather is beautiful here - it is sunny this morning and the high for today is 16 C. The magnolia tree in the neighbour's yard across the street is in full bloom and smells glorious. Flower gardens are blooming all around us. It will feel very good on this day to be surrounded by so many wonderful signs of spring, of re-birth and renewal.

But I have to be honest. Today is going to be a hard day. It is just hard, there is no way around it, to celebrate but not celebrate this day.

Last year, Harry's first and only birthday, was so joyful, especially because we didn't even know if he would live long enough to have a first birthday, let alone be able to celebrate it at home. A year ago, it was Harry's first visit to the Cancer Care Manitoba children's clinic. He and I stayed there all day. He had his blood work done and counts checked and he needed a blood transfusion. So we stayed until I think around 6:30 or 7:00 pm, as blood transfusions generally took 4-5 hours - 2 hours to order the blood and about 3 hours for the blood to slowly pump into his system. It was also his nurse Wanda's birthday. She shared her chocolate cake with Harry and I have a wonderful picture of him in the play area at the clinic with a nice chocolate face:

Today, we are going into Paris (Sarah lives in Neuilly sur Marne, a suburb directly to the east of central Paris), we will bring a picnic lunch and we are going to climb the Eiffel Tower to celebrate Harry.

My teacher, Kimberly, says it is a rare parent who is given the gift of birthing their child twice - once into this world and once into the next. And so I suppose, in this way, we jointly celebrate, two years since birthing Harry in so much love into our world, and eight months (April 3) since we birthed him, also with so much love, into the next place on his journey.

Happy Birthday dear wee Prince Happy Harry.

Love,
Mummy, Daddy and Lyddie.

March-ing On

2009-03-18T09:42:00.004-05:00

March feels so much easier than February.

I am sure that the weather has something to do with it. Although, March roared in like a lion here in Winnipeg - one of Lydia's last hockey Tuesday nights in early March was cancelled - not due to melting ice - but due to a -30C wind chill - once we moved the clocks forward one hour on March 8th, Mother Nature seemed ready to give us a break to accompany the evening sunlight.

It is difficult to describe just how overjoyed we are to welcome Spring back to our midst - winter settled in here the first week of November and we have had snow on the ground and unusually cold temperatures for four months straight! This past week we have FINALLY recorded above 0 C daily temperatures, the snow is starting to melt and the sidewalks are a treacherous mess of melting ice and puddles. Splash pants are a must, as are rubber boots, but walking is a dangerous activity - Lydia and I took two tries to make it to the park Monday afternoon - she fell into two puddles and soaked her mitts and the back of her shirt (which was not properly tucked into said splash pants) on our first attempt. But spring is really in the air and there is a feeling of anticipation in the air, there is no holding it back now, while we may get some cold days yet, real winter is behind us.

March last year was consumed by Harry's first two rounds of chemotherapy and everyday life in Rm 535 on CK5, or as everyday as life could have been on an oncology ward with your wee son hooked up to at least four different IV lines pumping a cocktail of lethal drugs into his wee body via a thin white line entering directly into his chest. But my memories of March match the sunshine. March was a month filled with optimism and hope. Harry was ALIVE - a major gift just in and of itself. He was responding brilliantly to the chemotherapy, he was his joyful, happy, contented self again. Each day with Harry was filled with so much love and laughter, it is impossible not to look back on last March and smile.

I am trying so hard to hold onto that feeling of light and optimism that I felt last March. It was a gift to feel that - to know so truly what it feels like to live in joy and love today, just today, not worrying about tomorrow, but truly living in and for today.

That was one of the true gifts of this journey with Harry - to be given the opportunity to experience fully what it means to live in the moment - and to live in JOY in the moment. Many people search their whole life to find this experience. And while I would rather that the journey with Harry had taken a different path, one that left him here with us, I am so grateful to have had that experience. I can look back on our past year with Harry and be so thankful for all of the wonderful moments of that experience.

We miss our little Prince so much. He is never out of our thoughts, though sometimes just below the surface, he is always in our hearts. I think we are coming to a place of acceptance in our journey with Harry, accepting this new configuration of our family. Although, our family will always be a family that includes Harry. Lydia so easily and purely captures this - nearly every day at school or daycare she draws a family picture - and it is always Mommy, Daddy, Lydia and Harry. His physical absence will be felt forever. I realize that will never go away, though it might dim a bit with time. Right now, I still always think, in every moment, how the moment would be different if Harry were here in his physical body with us. I don't know that I will every stop doing that.

I think I understand why somewhere between 75 and 90% of couples divorce or spilt-up following the death of a child and why all of the grief books I have read talk about the grief over the loss of a child as the most difficult of all grief journeys to walk. If you stay together as a family then that loss, that absence will ALWAYS be present, forever, from this point forward. To try to get away from that feeling of dislocation - that 'something is missing-ness' - I can well imagine feeling that the only way towards healing is to disband that family group, create a new family with someone else, where the absence of the child lost will not be central to the family configuration. I can't imagine that in the end that really helps. But I can full understand the feeling, the need to 'get away' to create an entirely new circumstance, where the child never was, so they might not feel so absent.

All that said, don't worry though, Henry and I are happily in the other 10-15%! I remember in the very earliest days of Harry's diagnosis. Henry was really scared that maybe we would spilt up over this illness, would our marriage be able to withstand the stress? I didn't even have to think about it for an instant. I think we might have still even have been on CK4 or just in the very early days on CK5, when Henry expressed this fear. I dismissed it outright as preposterous, that was a choice I simply was not willing to make. We were sticking together no matter what, end of discussion. It was one of those moments of clarity when we just made the choice - this would bring us closer together, however the journey progressed, end of story. We would not let this destroy us, it was going to make us stronger.

And so in March, we are trying to stay centred in the light - just as we did last March. Centred in joy, love, light and optimism. It feels so much better to be in this place and even though Harry is no longer physically with us. I so clearly know that he resides with us in the light. So as long as we stay centred in the light, we are never really apart from Harry. He is there with us always.

If you see us this month. Don't be afraid to ask us about Harry or talk about Harry. We are always thinking about him and we love talking about him, remembering him. Yes, it is very likely we might shed a tear or two, but tears are the soothing balm of grief. It doesn't make us feel badly to talk about Harry, it makes us feel sad if we feel we have to somehow pretend we are NOT thinking about him!

If you have any happy (or sad) memories of Harry that you would like to share, please do so on the blog. We would love to capture as many memories and stories of Harry as we can.

In love and light,
Cynthia

Updated Harry Venema Memorial Project Vision Statement

2009-03-14T22:27:00.005-05:00

Walk On, Indeed!

2009-03-04T09:27:00.002-06:00

Since Harry passed over in August I have read a lot. Typically, mostly books on death, grief, dealing with the death of a child, the afterlife, that kind of light fare.

One of my favourite books so far is by the famous american philosopher Ken Wilber. I have never read any of his work. I have always wanted to, but I couldn’t make it directly enough fit into my doctoral work and I was already reading far more widely than was likely advisable, so I had to shelve his work, figuratively and literally, till later.

This book, called “Grace and Grit” Wilber published in 1991. Grace and Grit documents Wilber’s and his wife Treya’s experiences with her five-year long journey and ultimate death from breast cancer, using his own words and her journal entries. I want to write much more about my thoughts on this book, because I have learned so much from it. Although one of the things that has most struck me is how similar their journey was to ours. Strange as it might be that a baby boy’s journey with cancer can resemble that of a women’s in her late 30s!

One the one hand I have to say I found it, rather perversely perhaps, strangely comforting that she died. This might sound cruel. But part of me will always wonder, did we do enough for Harry? What else should we have tried?

It is reassuring to know that the wife of a presumably wealthy American (Wilber had already published over ten books when Treya was diagnosed and was read widely throughout the world), and not just any American, but *the* american philosopher credited with creating the field of Transpersonal Psychology and especially known for his cogent synthesis of eastern and western spiritualism and philosophy, had ultimately died of cancer.

They had access to the best medical treatment in the world. They tried both allopathic chemotherapy and radiation, but also a wide-range of alternative therapies. They were critical and discerning, yet open to it all.

So it makes me feel better to know, in a crazy way, that with all their access and knowledge, even a Zen Buddhist master’s wife could die of cancer.

Very near the end of the book. When Wilber is describing Treya’s very last days. He quotes a famous Zen Koan, which he felt most aptly described Treya’s incredible attitude in the face her journey with cancer. I nearly fell off my chair when I read it.

The Zen Koan goes like this:

A student asked a Zen Master, “What is Absolute Truth?” ...

... and the Zen Master said only, “Walk On!”

That is my little Harry, my pint-sized sage, teaching us in his way the meaning of absolute truth ... walk on my loves, walk on.

Angel Baby

2009-02-25T12:25:00.001-06:00

We have many nick names for Harry. One of my nick names for him was, “Angel Baby”. How prophetic.

I recall so clearly the last time I called him that. It was on February 24th, 2008. We were still in the room on CK4, not yet moved up to the oncology ward CK5, but it was after we had been given the devastating news of his cancer. A nurse had come into the room to do something, I can’t recall what, take some blood, check a temperature, take a blood pressure reading?

I put the side of the crib down, I was on Harry’s left side, and I held his hand and stroked his head and comforted him as she poked and prodded. I can so clearly hear myself saying, “It’s okay Angel Baby, don’t cry, you’ll be okay Angel Baby”.

And then, my Awareness, observed myself hunched over Harry’s hospital crib; heard myself say those words, prompted me to say to myself “Stop. What kind of idiot calls her child, who has just been given a grave diagnosis of metastatic liver cancer, “Angel Baby”.

“Oh God," I thought. "What AM I doing. NO, I don’t want him to be my Angel Baby. Don’t call him that, I can’t call him that. What AM I thinking?”

I never called him Angel Baby again. Well, until he was my Angel Baby. Now I’ll always call him my Angel Baby.

Love,
Cynthia

The Harry Venema Memorial Fun Park

2009-02-21T21:34:00.001-06:00

Hi Folks

Here is the first description of the Harry Venema Memorial Fun Park, we're planning at Robert A. Steen Community Club. We've established a working group to bring this vision to reality.

We've now raised well over $10,000 dollars and expect to attract co-funding for project construction.

I'll use the blog to keep people apprised of our progress.

thanks,

Henry

The Harry Venema Memorial Fun Park - Description

2009-02-21T20:59:00.016-06:00

The Canadian Liver Foundation

2009-02-20T12:26:00.002-06:00

The Canadian Liver Foundation just called. Yes, I am not kidding. Yes, I gave them $50.00.

The poor guy, I think he said his name was Adam, he started on his spiel and as soon as I heard him say, “... calling from the Canadian Liver Foundation ...” I interrupted him and said, though I am not quite sure why, because I didn’t need to divulge this information, “Yes, our son just died of liver cancer in August, we’ll give $50.00”.

So apparently there is a way to stop a telemarketer dead, mid-sentence and render them suddenly speechless.

Until he called I had forgotten that it must be pretty much exactly a year since they last called. It was around the same time of day. I remember checking the number on call display as the phone rang. A “480-number.” I knew it was a telemarketer and I had debated not answering. But I did anyway.

Last year, I patiently listened to their spiel, “Canadian Liver Foundation ... blah blah blah ... research for liver disease ... blah blah blah”. We give a lot of money to charity. I sighed, considered it for a moment, “Should we give to the Canadian Liver Foundation?”

Then, I thought, “Oh, hell, we don’t know anyone with liver disease”. Yes, I really thought that.

And I said, “Thank you very much, but we give a lot of money to charity each year, and we just can’t afford to give anything else at this time”. And I had politely hung up.

We don’t know anyone with liver disease. Two days before taking Harry to the hospital to find out that he was, very likely, dying of metastatic liver cancer, I said no to a telemarketer from the Canadian Liver Foundation because, “we didn’t know anyone with liver disease”.

I’m not sure what that means. But if you believe in signs, then it was one of just several signs, of what was waiting for us. This year, it just seems like a cruel reminder. Yes, okay, okay, okay. I know someone who has died of liver disease.

Happy Harry Inner Tube Dancing to the Wiggles

2009-02-11T12:16:00.003-06:00

I wanted to post something happy about Harry. Not every day is sad for us. Many of our days since Harry passed over have been full of joy and love and laughter. We so strongly feel Harry's presence in our home and lives. We know that he is "just around the corner" or sometime right in the room with us, always loving us. I am just trying to figure out how to post videos to YouTube. Henry has put all of our video clips of Harry (about 41 minutes total, I think) into an iMovie movie. We will post it on YouTube - but we have to chunk it into 5 segments (max allowed is 10 minutes). So we still have some tinkering to do.

However, I have figured out how to post a small movie to YouTube.

Here is a link to one of our very favourite videos of Harry. It is Harry 'dancing' inside an inner tube in our living room.

The four of us were hanging out one morning. "The Wiggles" came on TV. Harry LOVED the Wiggles. In the video we captured the moment when the song "Wiggle, Wiggle, Wiggle" came on and Harry started spontaneously clapping, laughing, and wiggling right along. This is such a CLASSIC Harry moment - he is so full of joy and life. It is my favourite video of him and one I just treasure. It always makes me laugh and cry tears of joy when I watch it.

http://www.youtube.com/watch?v=VTJ_fhONu_M

We're also slowly trying to put together all of the pictures we have of Harry - somewhere between 1500 - 2000. We'll eventually get them all organized and into slideshows to download! I want to make a MyPublisher glossy book of pictures of Harry too. I am trying to write as much as I can - but also have to work on papers from my doctoral thesis for publication!

Have a wonderful, wiggly, day.
Love,
Cynthia

Six Months

2009-02-03T23:27:00.001-06:00

Harry died six months ago today.

He has now been gone for longer than the whole journey, longer than the whole time he was sick. It has passed in a flash. It doesn’t seem possible. How can it be six months since he died? From February 22nd to August 3rd seemed like the longest of times, a lifetime. August seems like almost yesterday, yet not almost yesterday. Time has moved in such strange ways this past year.

Would you believe that when I woke up this morning I didn’t automatically realize what day it was?

In bed, Lydia had asked us if it was a special day today. Was it anyone’s birthday, anyone who we knew? February 3rd? In my groggy, half-awake state, I knew that the day was important, but I couldn’t quite yet grasp why. The significance hid behind the cobwebs of my not-yet-awake mind. Who did we know who was born on February 3rd? I told Lydia,” I am sure it is someone’s birthday somewhere in the world”.

Looking at the clock, pushing 7:30, I quickly got out of bed, “We have to be on the ball today ‘Tuda. It is a work day for Mummy”. And Lydia’s comment was quickly forgotten in the sweep of the morning rush of getting dressed, making beds, eating breakfast, making lunch, and getting Lydia and I out the door in time for school and my bus.

It is someone’s birthday. Lydia’s school friend Callum turns five today. We’re going to his birthday party on Sunday.

It was when I was riding the bus to the University that it hit me. I guess I have been so pre-occupied with dreading all the other anniversaries in February that I had completely overlooked this one. February 3rd, oh, yes, of course, now I know. February 3rd. How could I possibly have forgotten so soon? It has now been six months, a whole half-year, a whole impossible half-year since Harry died.

The tears streamed down my face as I sat riding the express bus to the university and the cobwebs were torn and washed from every corner of my mind. Every moment of the last year flashes through my memory and I think of the last time I held my wee Harry. So skinny, his wee body ravaged from the chemo and the cancer. The last time I kissed his impossibly smooth, papery soft skin. The last time I felt his wee hand grasp my fingers and I weep.

God, I want him back. God, it feels so fucking unfair that he should be gone. Today I can’t pull out my philosophical balms and soothe myself with thoughts of the meaning of his life. Right now, in this moment. I just think about how much I miss holding him in my arms. The perfect weight of him in my arms, always balanced on my left hip. His right arm draped around my shoulder and his left hand tucked protectively down the front of my top, resting just at the top of my left breast, over my heart. As if he just needed one hand on Mummy’s flesh, to make sure I was real.

How can I even begin to put into words the ache I feel? The loss? The sorrow? I cry for me, for Henry, for Harry, for Lydia. I cry and shake my head at the impossibility of it all. How? How? I always ask myself. How did this happen? Why did this happen? How can it be possible that my dear sweet boy has died? And not just died, but died of cancer. How could it have taken my son? Wasn’t it enough that it took my Dad? Did I have to give it my son too??? This isn’t supposed to happen. I am not supposed to have to deal with this.

I know, I know. I can hear Henry’s voice already in my mind. When you get out of your ‘woe is me, victim-mode’ you can come and talk to me. You are not a victim. You are not being punished. Everyone suffers. I could have been born in central Africa, an innocent caught in the cross-fire in the Middle East, poverty-stricken, famine-stricken, family ravaged by AIDS … choose your sorrow. But yet, some days, the weight of my own particular sorrows feels so unfair. And oh, but some days it is so easy to believe in a vengeful god, sitting on his throne up in heaven, raining down another lightening bolt of punishment.

What sin could I have possibly committed to warrant this?

But as soon as I say all this, I stop. I don’t really feel better, fuming and raging this way. It helps for an instant. But when I stop, nothing has changed. The past is still the past and Harry is still gone. It doesn’t do any good to sit and ask questions that can’t be answered. It doesn’t do any good to wallow in self-pity. It gets me nowhere. It doesn’t change a thing and it doesn’t really help. It mostly just leaves me feeling empty and alone.

As we’ve known from the very beginning, the only thing we can control, the only choice we really have, is how we are going to respond in this moment. Sometimes it doesn’t feel like much. But it is perhaps the most powerful choice of all. If I look into the past, I can’t change what happened. If I look too far into the future I feel overwhelmed at the thought of enduring day after day, year after year without Harry.

So I try to do what Harry taught me best. I try to live just today, to only think of today, this moment, this instant. Just breathe and be. Try to just be happy in this instant. It is so hard. But, as Henry says, it is the only thing that we can do to honour Harry’s memory.

So that is what I try to do, to try to get through today. Enjoy the moments of today. But on a day like today, it is harder. Because through every happy thought I can’t help but let through the sad, sad, sad thought:

Harry died six months ago today.

We Are Seven by William Wordsworth

2009-02-03T22:34:00.003-06:00

Henry's cousin Miriam sent us this poem the other day, after reading the "February" blog posting. The third stanza so reminds me of Lydia, "she was wildly clad; Her eyes were fair, and very fair; Her beauty made me glad". It is with the same determination and spirit that Lydia insists we are still a family of four and that she is, was and will always be, Harry's big sister.

How strange it is to me. When a parent dies, we don't suddenly say, "oh you are no longer a daughter or a son". So why, when a child dies, do we wonder whether someone is still a mother, father or sister?

Henry and I thought the poem was so lovely and wanted to share it. Here it is.

We Are Seven
William Wordsworth (1770-1850)

-A Simple Child,
That lightly draws its breath,
And feels its life in every limb,
What should it know of death?

I met a little cottage Girl:
She was eight years old, she said;
Her hair was thick with many a curl
That clustered round her head.

She had a rustic, woodland air,
And she was wildly clad:
Her eyes were fair, and very fair;
--Her beauty made me glad.

"Sisters and brothers, little Maid,
How many may you be?"
"How many? Seven in all," she said
And wondering looked at me.

"And where are they? I pray you tell."
She answered, "Seven are we;
And two of us at Conway dwell,
And two are gone to sea.

"Two of us in the church-yard lie,
My sister and my brother;
And, in the church-yard cottage, I
Dwell near them with my mother."

"You say that two at Conway dwell,
And two are gone to sea,
Yet ye are seven!--I pray you tell,
Sweet Maid, how this may be."

Then did the little Maid reply,
"Seven boys and girls are we;
Two of us in the church-yard lie,
Beneath the church-yard tree."

"You run above, my little Maid,
Your limbs they are alive;
If two are in the church-yard laid,
Then ye are only five."

"Their graves are green, they may be seen,"
The little Maid replied,
"Twelve steps or more from my mother's door,
And they are side by side.

"My stockings there I often knit,
My kerchief there I hem;
And there upon the ground I sit,
And sing a song to them.

"And often after sun-set, Sir,
When it is light and fair,
I take my little porringer,
And eat my supper there.

"The first that died was sister Jane;
In bed she moaning lay,
Till God released her of her pain;
And then she went away.

"So in the church-yard she was laid;
And, when the grass was dry,
Together round her grave we played,
My brother John and I.

"And when the ground was white with snow,
And I could run and slide,
My brother John was forced to go,
And he lies by her side."

"How many are you, then," said I,
"If they two are in heaven?"
Quick was the little Maid's reply,
"O Master! we are seven."

"But they are dead; those two are dead!
Their spirits are in heaven!"
'Twas throwing words away; for still
The little Maid would have her will,
And said, "Nay, we are seven!"

A Dream - From January 31 2009

2009-02-03T22:32:00.002-06:00

I had a dream last night. It wasn’t about Harry, though I do dream of him often. It was about my childhood home in Guelph.

Many of you will know that my childhood home, my Mum’s house, burnt almost to the ground in a house fire in 2005. August 1, 2005 actually. Apparently, that weekend holds a huge energy of significant change for my family. We had just moved into our first home, our current home, on 2 August. The first phone call we received, as the movers were still bringing in the boxes, was from my Mum, informing us that her house had burnt down the day before.

If anyone has ever wondered where I get my strength from, they have not yet met my Mum. She is such an incredibly sweet and kind woman. She waited a day to call me to let me know her home of 35 years had burnt down, because she knew I was moving on the 2nd and she didn’t want to ‘bother’ me when she knew I would be stressed out with moving the next day. It was yet another surreal moment in my life, the first phone call we received in our first home was my Mum telling me my childhood home was gone. It was like the universe said, “Sorry, but you’re only allowed to have one home in the family at a time, so we had to take one away.”

Since the fire, I have had a number of dreams about the house. For at least half a year after the fire, I dreamt about the house as it looked right after the fire, when we were sorting through the remains, figuring out what could be saved and what couldn’t. (Most of the really precious things, pictures & special family mementos could be saved). My re-occurring dream was of sorting through things in the house, looking for something we wanted to save and not being able to find it. In another variation, I would wonder where something was, I would be searching frantically for it, ending up angry that I couldn’t find it. I would wake up and wonder, where was that thing, did we save it, was it lost? I was learning to let go of all of the things that really weren’t all that important. Things that might be nice to have saved, but that, really, in the grand scheme of life, were not so necessary to my ongoing happiness.

After a while the house dream morphed into something else. Next, I would dream that I was coming back to visit Guelph and was just passing by to see the house one last time. I would be astonished to see a light on in the house. I approached, and saw that my Mum was inside. I went in and found, much to my absolute astonishment that my Mum had decided that she could still live in the house. She had swept things up and put up new curtains. She told me, “It isn’t so bad, really, the upstairs was really only smoke-damaged. As long as I don’t go into the basement (where the fire had started and what was really completely destroyed) it will be quite alright, quite livable.” In my dream, I tell her she is crazy, “Mum, you can’t possibly live here! The house is BURNT”.

Sometime in the past year. I am not sure exactly when, the dream changed yet again. This time, when I went to visit the house, (fortunately) my Mum was NOT living there, instead, when I went inside, it turned out that someone had gutted the inside and they were starting to renovate it. From the outside the house looked the same as it always had. But on the inside, it was much bigger. It looked like the inside of an old castle, stone walls, earthen floor, wooden beams, a large fireplace with a huge stone hearth at one end. I was annoyed with the people for renovating the house. Indignantly, I told them that they had no right to renovate the house - we still owned it!

Last night I had a new dream about my Mum’s house. It was like it was sometime in the future. The house was once again, largely the same on the outside, but the side-street (the house was one house away from a corner) was a much busier through-fare than it is now. (It is a residential neighbourhood near the University of Guelph). The house had obviously been renovated. I approached the house from the side - up what would have been the driveway, but there was a new sunroom stretching across the whole side of the house. As I entered, I was in awe, the house had been totally renovated - but turned into a fabulous English Pub. The new owners had imported all of this gorgeous woodwork from England. I wandered through the house/ pub and was thrilled to see the transformation. I remember crying in my dream, “Oh my Dad would have loved this, Mum always said his dream was to retire and run an English Pub”. I left the house and was riding on a bus, not sure where I was going, but I was on my cell phone, telling my Mum she had to see the house now and how wonderfully it had been transformed.

Okay, then the dream got weird, next thing I knew I was sitting with Michael Ignatieff and three other political leaders (though in the dream I don’t know who they were), and Michael is explaining how logical it is about the transformation about the house.

This is the first dream I have had in which the house is ‘okay’ and transformed into something new and good.

It felt significant that I should have this dream on the eve of February 1.

I take it as a sign that, maybe, just maybe, in February we will realize that we are transformed too, but that it is okay, it is something new and good.

Love,
Cynthia

p.s. My mum sold the property to a developer in early 2007 and the house was demolished later that year. The property was severed, with a neighbour purchasing the back half of the lot and as of yet, I don’t think anything has been built on the remaining frontage.

February

2009-01-29T09:47:00.009-06:00

February looms. Time marches inexorably into February. How are we going to get through February? Already a hard month to endure in the endless winter of Winnipeg. It seems doubly so this year.

We passed a threshold last Sunday. Sunday January 25th. Well not the 25th in particular, rather the celebration of Henry's mother's birthday - Harry and Lydia's Beppe's birthday. Her actual birthday is the 24th. Last year we celebrated it on Sunday the 27th. This year we celebrated her birthday together as a family by going out for dinner. We always end up sitting in these little protective groupings, together but not 100% together. A nested holarchy of family? We were seated at a big round table in a nook at the back of the Chinese restaurant in the strip mall out in the suburbs. Sandy and Gary sat like protective sentinels around Gwyn. Grace, then Dave on Sandy's left. Kathleen then Gareth on Gary's right. Three spots, only ever three spots now, for our family of four. I looked at those three spots waiting for us at the table and inwardly sighed, Harry’s absence a huge unspoken presence.

I try to joke with myself, “Angel Harry will have to sit on his Dad's head again”.

It is the weirdest feeling of back to the future. We were a family of three for 3 years, 4 months and 4 days. Then Harry came and we were a family of four. His life passed so quickly, over the threshold of life, over the threshold of cancer, through the spinning door of death, and boom, here we are again, the three of us our heads spinning, the doors whirling behind us. Back to being a family of three. But not ever again a family of three.

But back to last year, last year we had everyone, including several of Grace's siblings, over to our house for tea and cake. Henry and I recall it so clearly: for us this marks the last family event where we remember Harry as truly being healthy.

You might remember, the very first picture of Harry Gareth put up on the blog, was taken on that day. Harry was standing in our living room, holding onto our big wooden chair, with his trademark huge grin on his face. His laughter echoes in my memory. Harry in his world of delight, showing off for all the rellies, pushing around his "hippo car", so close to walking on his own.

For us, it now marks a door. It is the door between two of our worlds - on one side is the world where Harry was just Happy Harry, a healthy, thriving 10 months old baby boy. The other side of the world is the world of cancer. The world where our baby has cancer. It still seems so surreal that we ever walked through that door.

Although Harry had not really been displaying any overt outward signs of illness yet, when I look back at the photo from that day I notice that he looks pale, his skin has a slight yellow tinge, jaundice I suppose. We didn't notice it then. Who isn't pale in Winnipeg in January?

I have gone over and over and over in my mind, wondering what kind of mother doesn't notice that her baby boy is getting sick. Not just sick, but actually, as we would find out, on the very edge of death. How can the rarest and most aggressive of all childhood cancers have been growing in my son and yet he was never sick, never even had a cold?

So how does one get through a day like last Sunday?

The milestone. It is the first thing you think of when you wake up. You know the way your child comes into your room when you are still sleeping and stands right beside your head, trying not to be too noisy, but in the effort ends up breathing heavy in your ear as they whisper, "Mummy, are you awake?". You actually are awake, you awoke the first moment you heard the thud of their feet leaving their bed and hitting the bedroom floor …

… In the way that only a mother wakes up, it starts when your newborn is first placed in your arms, something that gets switched on in your head during childbirth. Doesn't matter how deep of a sleeper you were before you had kids (and I could sleep through an alarm blaring right beside my head for half an hour, minimum, much to the frustration of my housemates in University) you now wake up the instant your baby sighs too heavily, or grunts too deeply - even if they are sleeping down the hall two doors away. In fact, the connection goes so deep, you often find yourself waking up in the middle of the night, not quite sure why you have woken up, but in a moment you know why, because you hear your baby cry for you. Your body knew they needed you even before your brain did ...

… You followed the patter of their feet across their bedroom floor, waited for the sound of their door opening, their movement down the hall, opening your door ... it’s the same thing with the milestone. Something wakes you up, in the first instant you are not quite sure what it was, then in the second instant you know, and there it is, standing beside your bed, whispering in your ear, "A year ago today was the last day that you remember Harry being truly well".

With your child, you reach over and pull them into the middle of the bed, to nestle in between you and your partner, to get a few more minutes of sleep before they realize they are fully awake and demand to be taken downstairs to start their day. With the milestone, you reach over, pull it over your head, and prepare to wear it, a weight around your neck, all day long.

You feel it next to your chest, rubbing. Not entirely uncomfortable, but annoying nonetheless. You resign yourself to it being there all day. Sometimes as you go through your day you don’t even feel it or notice it. You are absorbed in the moment with whatever little thing you are doing. Other times it is so heavy, it takes all of your energy not to sit down on the spot and dissolve into a sobbing, shuddering heap of tears. Some times you do just dissolve into that heap.

That’s usually when a shadow passes over Lydia’s face, anxiety, concern, worry, but something else too. The, “what the heck is your problem Mummy” look that only a child can give their Mum. Lydia will ask, “Why are you crying Mummy (Daddy)?” and we’ll answer, “Sometimes Mummy(Daddy) just feels so sad about Harry and needs to cry”. And Lydia will say, “Don’t cry Mummy, Harry is here with us right now, don’t you see him? Come on Harres-sa-bears-sa, let’s go play in the living room”. Her blond head turns and she skips away.

It often isn’t quite as bad as you imagine it will be in your head, in the days leading up to it. Though sometimes it is worse. Like New Years was, or Christmas. I’ll tell you about them another time.

And so all through Sunday, off and on I thought about that Sunday a year ago. Wondered, what was going through my head that day? Did I hold Harry close enough? Did I give him enough hugs and kisses that day? There was another picture on the blog, of me holding Harry, him nestled in my left arm, perfectly balanced on my hip. I know I hugged and loved him that day.

Struggling through church in the morning. One day, I swear, Henry and I will make it through a church service without one or both of us reduced to tears, just not yet. So struggling through church again, trying not to look at the baby boys (why are there so many baby boys at our church?) bouncing in their mum’s lap, peering over their dad’s shoulder, crying to be nursed, snuggled into a warm breast, their wee body melded to their mum’s, the sound of the rhythmic sucking tugging at my heart. Through coffee hour. Watching the toddler boys chase their older siblings through the forest of adult legs in the Junction at coffee hour. I look in vain for a blond head of curls that should be chasing his big sister off to play at the ‘hidden door’ that leads from the hallway / secret passage into the front of the church. Listen for a giggle I won’t ever hear except in my memory. Put on a brave face as kind friends ask how we are doing.

Home again for lunch. I try to recall, what did we eat for lunch a year ago? I can’t remember. I didn’t know then I would feel such a need to remember now. To try to trace out each step, catch each whisper, each faint ghost. I go and play soccer at 15:30.

I had almost forgotten how much I love playing soccer. I joined a women’s recreational team back in October. One of the mum’s from my mum’s group, has played on the team for years. I’ve wanted to join for a while but never had the time; now I have the time. The first few games I nearly keeled over, I was sucking wind so bad. Didn’t get much exercise in the past year, sitting beside a hospital bed, or holding Harry all day long at home. But it really is incredible what the body does remember. I’ve played for so much of my life that being on the pitch really is second nature. I know how to move, where to run, how to pass, without really thinking about it. I scored my first goal the first time I touched the ball the first game. A nice gift of encouragement from the universe. My attitude has changed, since Harry died. I used to get anxious, was I going to be good enough in the game? Would I let my team down? Would I be benched for not performing well enough?

Some of the anxiety is senseless – in a rec. league where everyone plays – but I am filled with the thrill of the game, love the rush as I go for the ball. The moment I feel tired I remind myself, “remember how much you love doing this, enjoy every minute of this game”. And I do, do in a way I haven’t for years. A gift of learning from Harry. In that hour I am simply in that game. I don’t think of Harry for an hour. I just think of playing and winning.

Well that isn’t quite true. I don’t think of Harry when I am on the pitch. When I am on the pitch I am completely in the game. But as soon as I am on the bench for my breather, Harry jumps back into my head. No one on the team, except my friend, as far as I know, knows anything about Harry. I’m just a woman who comes out and plays for 50 minutes every week. No one asks me about my story. But I play it in my head, especially during breaks.

It is the same story I play in my head when I walk down the street. Or when I know I am going to be meeting someone new. Something I practice saying a million and one different ways in my head. So that when I am asked, it will come out sounding natural, not all rushed, halting, and awkward. That question I am sure someone will ask one of these day. It always comes up in any group of women. “Do you have any kids?” “How many kids do you have?”

I cannot, will not, answer, “One”. To do so would be to deny Harry. Judas-like. To deny that he was born, lived, laughed, loved for sixteen incredible months. He was my son, is my son, always will be my son.

So I practice saying it, over and over in my head, “Oh, two, my daughter Lydia is five, my son, Harry, would be 21 months old, but he died in August of cancer when he was 16 months old”. Or maybe, “Two, Lydia is five and my son, Harry, he is an angel now. He died when he was 16 months old in August”. Does that sound right? How about, “Two, one living, she’s five, and her baby brother died a few months ago, he was 16 months.”

No one on the team has asked yet. So I just run scenarios through my head as I sit on the bench. Different ways it may be asked and different ways I might answer. So that in that moment, the moment I am sure will come, I’ll be able to say it and not break down in tears.

But that moment is not today. We win our game (3-1. I scored one goal and assisted on the other two). Off the pitch, back to the dressing room. Casual chatter. This time about the goalie on the other team that injured herself going up for a header against one of our players in the last minute of the game. Smile on face, pulling on my clothes. The script running through my head, “I have two children, Lydia and Harry, but Harry is an angel now”. Walk to my car by myself. Phew, a mixture of frustration and relief. No one asked ‘the question’. I half want someone to ask it to me, so I can hear how it sounds when I finally say it. But not today.

Today it is back home, to Henry and Lydia. To our house, the house where Harry lived. Time to shower, then head out for dinner. I’ve almost made it through the day.

Dinner. Henry, Lydia and I take our seats at the big round table. Lydia sits between us, me beside Gareth, Henry beside his Dad. We complete the circle of the family. But the circle will never again really be complete. The food comes and I am consumed, as a mother always is, with managing Lydia eat. “Watch your glass” (pull it away from the edge of the table). “Try your broccoli. You love broccoli. No, there are no funny little bits on your broccoli, it is just like home.” (Help her with a spoonful). “Try the chicken. You love chicken. No it is not spicy. Yes, Mummy is telling the truth.” (Help her with a forkful). “How about some rice, you love rice.” “Okay, let me just finish a bite of my food and I’ll take you to the bathroom”. “Lydia, please be careful as you run through the restaurant, watch out for waiters and trays of hot food”. “No, we don’t know those people.” “No, I don’t know what they are talking about.” “NO, I am not going to go over to them and ask them what they are talking about; it is none of our business.” “No, I don’t know who is the oldest in the restaurant.” “Yes that man over there very well could be the oldest in the restaurant”. Sigh. “Yes, I think both of our waitresses are Chinese.” “No, I don’t know if they are 100% Chinese. They could be half-Chinese. No, I don’t know 100% for certain that they are only half-Chinese, and NO, I am not going to ask them. They are Canadian Just Like You”. “YES, I do think we have the biggest family group here”. “No, I don’t know why they seated us at the big table at the back of the restaurant instead of the big table at the front of the restaurant”. …

Would you believe that through all of that I do still have time to wonder what finger foods Harry would be enjoying, were he here with us? Where would his high-chair be? How long would he sit still before we had two kids running through the restaurant and we gave up, gobbled up the rest of our food, called it a night and headed back home?

Home late for Lydia. 20:30. Past her bed time, so it’s straight upstairs to bed. Harry’s room an open door at the end of the hall, matching the open wound in my heart. The bedtime ritual. PJs, pee try, the three of us snuggle in bed for a story or two, Lydia drinks her milk (we’re FINALLY done with bottles with her, her New Year’s resolution). Wipe face, brush teeth, second pee try. (A few months ago she had a very rare accident in the night, hasn’t happened in at least a year, but as a consequence, we now have to do ‘second pee try’ every bloody night. It’s what she needs to feel secure, I tell myself, be patient, smile, breathe). Lights out. Cuddles with Mum and Dad. We say prayers, two prayers one in English, one in Friese. We ask Lydia what was the most beautiful thing in her day. We share with her the most beautiful thing in ours. Then Henry says, as he always says, “Mummy loves you. Daddy loves you. Harry loves you. Good night Lydia.”

And always, in my head, “Good night sweet Prince Harry”. We lie in bed with Lydia till she falls asleep, and every night I think of Harry. What would our bedtime routine be like if he were still here with us? Would I still nurse him to sleep? Would he have weaned himself by now? He and Lydia would be sharing a room by now (or so Lydia wanted). Stop thinking so much.

We tuck Lydia in, and creep out of her room. Downstairs. Henry and I talk about the day. Was it as bad for you as you thought it might be? No, it was okay. Phew. We made it through.

Now the next milestone. February. The whole bloody month of February. It starts in two days.

Walking On

2009-01-28T11:02:00.002-06:00

There are so many things we want to write to all of you, our dear friends. So many times over the past months I have composed blog postings in my head. But have never found the energy to actually put fingers to the keyboard. There is so much of Harry's story, of our story, that I feel I need to get down, into actual record. One just has to start.

So here we go.

We have had a good fall. The days passed. Many in tears. But many in laughter too. Milestones (1 month since Harry died, 2 months, 3 months, 4 months, 5 months, Thanksgiving, Christmas, Lydia's birthday, New Years ...) loomed, were feared, endured, breathed a sigh of sadness and bittersweet relief when they had passed.

Henry is back at work. I have started my postdoctoral fellowship at U of M. Lydia is thriving in Kindergarten. Not a day goes by that we don't think of our sweet Prince Harry. If I am not actively engaged in thinking of something else, my default mode of existence is to think about him. I wonder if that will ever change?

Grief is an odd thing. It can be so huge, all-consuming. It is something living and breathing on its own, or so it seems. It shrinks and expands all the time. Sometimes it threatens to overwhelm us. Sometimes it is small, manageable, fits comfortably in my pocket.

It is always there, somewhere, hanging around. But I can say with much certainty. I would rather have this grief, than to never have had Harry at all. If fate should offer, "Here, I will take away your grief, but in return, I take away all memory of Harry". I would turn away, reject the offer outright.

The old saying IS true. "It is better to have loved and lost than to never have loved at all."

I need to get back to work. But I wanted to at least start, today. So that tomorrow, I've started up the hill of writing down our story with Harry.

We know with certainty that love never dies. Harry no longer wears "his little overcoat of a body" as my teacher Kimberly says. But he is near, always, just around the corner. Maybe you have felt him too?

Love and light,
Cynthia

CJOB interview link

2008-09-22T21:21:00.010-05:00

Good evening, everyone.

As you know from the Sept 17 post, I had the opportunity to share some of Harry's story on Larry Updike's Morning Show on Winnipeg's CJOB radio station. Of particular interest to the folks at CJOB was the story about the Bus Stop sign. Simon was able to capture the interview and emailed the link to us.

Have a listen, if you wish.

(We're having difficulty establishing a direct link. Please copy and paste the following URL, and you should be able to hear it in Quicktime.)

http://www.homeontheland.ca/cjob_interview.mp3

Chattynanny - short address

2008-09-21T15:24:00.004-05:00

A number of you have had difficulty finding the long address of S. Kelly's post regarding Harry.

Here's a easier way to get there: http://chattynanny.typepad.com

Harry's post is the second one under "recent posts".

Hope that works.

Thanks again to "Chatty Nanny" for her kind and perceptive words.

Discovering Harry's story

2008-09-20T10:44:00.003-05:00

We’d like to draw your attention to another blog called Tales from the Tot Tamer. Siobhan reflects on the impact of discovering Harry’s story. Her reflections, filled with grace and gratitude, begin like this . . .

“I have a few posts in draft waiting to be completed, but this post is probably the most special and most important one I will ever post.

This is the story of Harry, and it's a true story, not from my imagination, and I don't believe I would ever have the wits to create a story as beautiful as Harry's.

Last month, I was searching the Free Press archives for an obituary of a friend from Winnipeg. In that search, I came across Harry. I never found the obituary of my friend, but I am incredibly thankful that Harry showed up to tell me about love and hope and the strength of a baby.”

Please read the whole post at

http://chattynanny.typepad.com/tales_from_the_tot_tamer/2008/09/hendrik.html

Interview on CJOB 68

2008-09-17T06:12:00.003-05:00

Larry Updike, the host of the Morning Show on CJOB 68, heard about the "Bus Stop Sign" story through a colleague of mine. He has contacted me, and scheduled an interview about how the folks at Transit's Customer Services rose to the occasion, and marked Harry's love of the 10 Wolseley bus by producing his own personalized bus stop sign - and did so on very short notice.

You can hear it this morning (Wednesday, Sept 17) at about 8:30 on CJOB 680 on the AM band.

Gareth