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.
Thursday, December 3, 2009
Tuesday, December 1, 2009
Children's Brain Tumor Research Foundation
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!
Thanks!
Cynthia
Here is the link to vote for CBTRF:
CLICK HERE TO VOTE FOR CBTRF to win a $25k Grant for Research!
Monday, November 30, 2009
Se-bas-tien
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
Sebastien ... Se - bas - tien ... our little "see bus ten" - the name we are sure Harry would choose for his little brother.
Love
Cynthia
Friday, November 27, 2009
Hint on Origin of Sebastien's Name
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
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
Wednesday, November 25, 2009
Baby Sebastien Photos
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
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
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| Baby Sebastien Photos |
Wednesday, November 11, 2009
Photos of our home renovation
The below link should go to a Picasa web album showing picture of our home renovation.
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| Home Renovation |
Tuesday, November 10, 2009
20-Week Ultrasound
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
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
Tuesday, November 3, 2009
One year three months
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
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
Friday, October 16, 2009
Packing Up Harry's Room
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
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
Wednesday, October 14, 2009
Harry's Room
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
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
Tuesday, October 13, 2009
Packing Up Harry's Room
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
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
Tuesday, October 6, 2009
Laundry
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
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
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
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
Friday, October 2, 2009
Amnio or no Amnio
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
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
Wednesday, September 30, 2009
A Baby Brother for Lydia and Angel Harry
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
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
Monday, September 21, 2009
Cancer Mom
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
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
Tuesday, August 18, 2009
Surviving the First Year
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
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
Friday, August 7, 2009
4 August Last Year 2008
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.
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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.
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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.
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.
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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.
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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.
Wednesday, August 5, 2009
3 August Last Year 2008
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.
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.
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