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
Tuesday, August 18, 2009
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.
Monday, August 3, 2009
2 August Last Year 2008
I sat up till 3:00 am with Harry on the couch - he snoozed and vomited alternatively.
Concerned about dehydration.
This am - 9:00 am went to Dr. Sims for Harry's second IV Vitamin C treatment. He also gave Harry 200 cc of fluid.
Ran around to pick Janine up from airport. We were late due to extra IV fluids @ Dr. Sims. Missed her at the airport - she was waiting at our house when we returned.
Cathy & Dr. Isreals came by - gave IV hook up & portable IV pump, but we're concerned with the amount of sugar in the IV water /solution.
All day Harry's tummy was better, taking some food and keeping down meds.
Lydia's most beautiful thing was helping Janine make dinner - grating cheese for chicken wraps. Mine was having Janine arrive - *so* wonderful to have her support.
Also Jim came with Erika to offer energy from their Ayahuasca Ceremony, done the previous night (Friday) for Harry. Very moving "sublato" (sp?) ceremony or "breathing of energy" via breathe and tobacco. Jim sang sacred songs for us and blessed us, all four of us, with the breathing of energy.
Felt amazingly revived and strong after.
Claude also came to give Reiki and body talk to Harry.
We took him off the IV, concerned with bloating. Now very concerned that black tarry toxins are clogging bowel, as no BM since Friday at 11 pm-12 am. I think he might be massively constipated - how to help him move this out?
Henry's most beautiful thing was the Sublato ceremony with Jim - very moving and so much energy.
But another very sleepless night (saturday), Harry back to vomiting off and on all night.
2 August 2009
Oh to have known that this was our last full day with our Prince Harry in this mortal world. Would I have savoured each moment a little bit more?
Henry and I were feeling pretty exhausted by this point. We had not had a solid night sleep in probably two weeks. Taking care of Harry 24/7 was starting to take its tole on us. It wasn't just the care for Harry. We did that gladly.
I remember when Cathy and Dr. Isreals were leaving, just before they went out the front door, Cathy turned back and asked, "Are you getting much sleep?"
I replied with a shrug, "No, but Harry's hasn't ever slept through the night in all of his 16 months, so I haven't really slept in 16 months, I'm used to it. There will be time to sleep when Harry is healed."
"Let us know, when it is getting to be too much. If you need help." Cathy insisted. "Call me anytime, if you need anything."
"We're fine. We'll manage just fine." I just couldn't imagine any kind of help, didn't want any strangers in our house right now.
It wasn't just the taking care of Harry that was so stressful. It was trying to figure out the best route to healing him that was taking its toll. When allopathic medicine runs out of treatment options, that is just it. They say, sorry very much, there is nothing more we can do. They offer palliative care and medicine to keep your baby *comfortable* in his last days.
We refused to simply give up on Harry because allopathic medicine had run out of their one option and given up. We have read too widely, experienced too many other cultures and ways of being, to simply accept the western, rational-scientific worldview as the final arbiter on life.
As wonderful as our medical system is (and I will defend the Canadian medical system against all critics), it does not allow very much at all for other modes of healing. Well, there is some latitude for alternative healing, but only as a secondary complement to allopathic medicine, for example, Reiki was offered at the hospital, but not as a genuine healing modality in and of its own right.
So we were basically on our own, trying to design a comprehensive alternative treatment healing regime for Harry.
When Harry was first diagnosed, I had picked up a book call, "The Field" by Lynn Mctaggart. This book explains the latest quantum physics behind the idea of what has been alternatively called the Zero Point Field, the Quantum field, the Divine Matrix or just the Field. It is far too complex to explain in this blog post. But, very simply, the idea is that we are immersed in a unifying energy field and we ourselves are fields of energy. Our energy fields are constantly 'downloading' information from the Universal Energy Field (UEF). This field contains all knowledge and memory, past, present and future. This is not science fiction. This is leading-edge quantum physics. But these ideas also unify the ideas of the ancient mystics and saint and modern quantum physics. In leading-edge quantum physics western science and spirituality meet and converge.
Our energy fields have been called chi, life force, prana.
Reiki, energy field work, acupuncture, qi-gong all work with our energy/ energy fields.
In simple terms, (though it is not nearly so simple and I am making a gross over-generalization here) disease is manifest as blockages in our energy fields and different types of alternative healing modalities work on breaking down and moving out those energy blockages.
So were were working on developing a mixture of intense oral vitamin treatment, dietary treatment, and naturopathic treatment (working with a naturopathic doctor here in Winnipeg and a second one in New Mexico). A neighbour is a Reiki master and he was giving Reiki and body talk to Harry, as was another friend. Henry took Level I and Level II Reiki to give it himself to Harry. I took Level I and II in a type of energy field work, called Way of the Heart. And of course, hundreds if not thousands of people were praying for Harry all over the world.
But trying to do all of this learning and research while also taking care of a critically ill child, and trying to somehow keep life normal for his 4 year old sister was very, very, very hard.
Janine has asked me since, "Did I know that Harry was dying?"
Poor Janine, in the week between when we made our plans for her to come from Toronto to help us out and her actual arrival, Harry got so sick so quickly. By the time she arrived on 2 August. He was so thin and frail and sick and weak. I am sure it was a huge shock to her to see him. We just saw our same Harry. Janine has commented to me that she could not believe the level of intensity and stress in our house when she arrived. We had no idea - it was just our life.
Did we know he was dying. No. Not really. You see, when you are pushed to a place at the very edge of life and death, living on that knife-edge, you only have one option. You have to choose. Hope or fear. There is not room enough on that thin edge for both. When you are looking into the abyss, you have to make a choice and the choice becomes very, very, crystal clear. We chose hope. We could not live with ourselves had we chosen any other way. We very intentionally chose to have hope and believe that Harry was healed.
I remember back in the winter, Russell, our minister at St. Mary's Road United Church, preached a sermon about one of the New Testament healing stories and the faith of a woman who had been experiencing hemorrhaging / bleeding daily for over 12 years. Through all of the 12 years of pain and suffering she never wavered in her hope and faith that God would heal her.
Upon seeing Jesus, I think she was one of the people who just touched his robe and either Jesus or one of the disciples asked, "Who touched my robe?" Seeing the woman Jesus said, in his customary fashion, "Your faith has healed you".
Russell talked about how, in our day and age, we would think this woman foolish for having such deep faith and hope in healing, through 12 long years of suffering. We would think it crazy that you would hold onto faith and hope in the face of such sickness. We would think it impossible for someone to be healed in an instant.
I remember thinking to myself during that sermon, "But you haven't been pushed to the edge, to that place where you have to make a choice. Where it is not theoretical. Where you have to choose between faith and hope or fear and darkness. When you are pushed to the edge, you choose hope and faith over falling into the abyss."
And so that is where we were. Sitting on the knife edge, precariously balanced on hope and faith.
But I have to admit, in Harry's last few days, doubts started creeping in. I think it was my sub-consciousness trying to prepare me for what it knew was to come.
My sister had sent a lovely new outfit for Harry for his birthday, but it had only arrived just around Henry's birthday, July 22. The last video we have of Harry is of him opening this gift. At the end of the video, I tried to hold the outfit up to Harry, but he fussed and pushed it away. Then he pointed to his toy school bus and wanted to hold and play with that instead. The outfit sat on our dining room table, I hadn't found time to take it upstairs yet. I remember walking past it once and the thought flashed through my mind, "That is the outfit I will put Harry in after he has died, because it will be new".
Immediately, I was angry with myself for the negative thought and I quickly "cancelled" it.
Thursday or Friday, I had a dream, or a waking dream, either while sitting outside with Harry or walking with him in my arms down the street, "This is getting too hard for all of us. It would be easier if Harry just dies. We'll be okay, Henry, Lydia and I. Lydia especially is so happy, she can cope. We can do it. It will be hard at first, but we can manage." I got so angry with myself for that thought. "What the fuck are you thinking, Cynthia? You know exactly how hard that would be. You know that it would not be easier than this. You do not want that". Again I quickly banished the thought.
But except for those few stray thoughts in Harry's final days, I really, honestly, right up till he passed over, believed he was healed.
Both Henry and I had this intense feeling that we just had to get through the weekend, and come Monday he would turn a corner and be healed.
I knew the vile black sticky stuff he was vomiting up had to all come out. It was the toxins, what was making him sick. We had to get it out. But I didn't know how. But I knew if we could just get it out he'd be okay. Or that was the very, very strong feeling that I had. Henry too, felt with certainty, that we just had to get through the weekend and Monday would be a turning point for Harry. The smell. It had a very distinctive smell. A chemical smell. Like all of the residual chemotherapy chemicals and the toxins were coming out. I will never, ever, forget that smell.
I wish I had known that that last night, Saturday August 2 2008, was the last night we would sleep with our wee Harry. I can still feel him between us, rolling between us, cuddling each of us. I remember at one point in the night, Harry was lying sideways across my tummy and chest. I stroked his head and whispered to him. "Daddy needs to feel you cuddle with him, Harry, go cuddle with Daddy." And he did.
I remember that last morning, the four of us in our bed. We can hear when Lydia wakes up and thumps out of her bed, hear her walking across her bedroom floor, hear her open her bedroom door. Harry always sat up and watched our door, with a big grin of anticipation on his face, eager to see his big sister. Lydia came bounding into our room, always the cheery morning person, "Good morning Hares-y-bares-y-boinga-boy". Henry got Lydia her morning bottle (yes, okay she still had a bottle at 4, we wanted to wean her off of it, but while her little brother was going through chemotherapy was not deemed a good time in our opinion!!!). Harry nursed and she drank her milk. Then I remember, so clearly, Harry sitting up and signing for water to drink. He drank from my cup at my bedside.
Harry still nursed, but to be gentle on me, he had started trying to wean himself his last two weeks. I know he really wanted to nurse, but he was holding back, to try to be gentle on me. In response, I started pumping to try to increase my milk supply and taking "mother's lactaflow" and other herbals to increase my milk supply. I was not going to deny him essential nutrients from my milk. I think he knew he was going, or that he had to go soon. So he wanted to be gentle on me. But I would have none of it. But in his last weeks he nursed less and less and as soon as he finished nursing, he would reach for his Dad. I was okay with that. I knew that Harry knew (and Harry knew that I understood) that he and Henry needed as much time together as possible. I was okay. It was okay with me, for him to reach for his Dad more.
And so in some ways. Our last full day with Harry was rather unremarkable. Except for of course the whole remarkable situation we found ourselves experiencing. It was just another day. Just another joyful, happy, beautiful, hopeful day with our Prince Harry.
2 August 2009 - We are Rainbow People
Harry's sign to us is a rainbow. I will tell you more about this in the coming days.
A few days ago, I asked Harry if he could send us some rainbows, just to once again let us know he is okay and always with us.
Saturday, we decided that we definitely wanted to go to church on Sunday. It was the first Sunday our church would be gathering after our month's holiday in July. I phone our florist to order flowers to have at church in memory of Harry. We choose a lovely summer bouquet called "Rainbow Bouquet". I phoned Russell and left a message, asking if he would be able to receive the flowers Sunday morning and if he could say some words of remembrance for Harry.
Oh boy, did he ever.
Russell did not know about our connection to Harry and rainbows. Yet, when we walked into the service, the 'theme photo' Russell had chosen to project above the alter for the service was a beautiful, bucolic country scene, a barn in a grove of trees, with a perfect double rainbow painting the sky above, and dominating the photo. Both Henry and I were stopped in our tracks when we saw the photo.
But more than the photo. Russell preached about a woman who once was very involved at one of his past churches. Her husband was not only an atheist, but rather rude and aggressive about it. He would criticize her every time she left for church. One of his favourite taunts was, "Oh are you going to visit your Rainbow People". He called us, us 'church folk' Rainbow People, because we are so darn optimistic, Utopian and so full of faith and hope.
Russell talked about how he wanted to disagree with this man, was ready to bring out his full arsenal of arguments against him, but was stumped. He had to agree. We are a Rainbow People. We are full of foolish, lavish, extravagant hope, faith, and belief that the world can be a better place, a place of love, of peace, of freedom, of harmony. Yes, indeed we are a Rainbow People.
And Russell's closing words were especially poignant, "Trust in Rainbows ... we are not alone".
Indeed, we are Rainbow People, we trust in Rainbows, and we are never, never, ever, alone.
Love,
Cynthia
Concerned about dehydration.
This am - 9:00 am went to Dr. Sims for Harry's second IV Vitamin C treatment. He also gave Harry 200 cc of fluid.
Ran around to pick Janine up from airport. We were late due to extra IV fluids @ Dr. Sims. Missed her at the airport - she was waiting at our house when we returned.
Cathy & Dr. Isreals came by - gave IV hook up & portable IV pump, but we're concerned with the amount of sugar in the IV water /solution.
All day Harry's tummy was better, taking some food and keeping down meds.
Lydia's most beautiful thing was helping Janine make dinner - grating cheese for chicken wraps. Mine was having Janine arrive - *so* wonderful to have her support.
Also Jim came with Erika to offer energy from their Ayahuasca Ceremony, done the previous night (Friday) for Harry. Very moving "sublato" (sp?) ceremony or "breathing of energy" via breathe and tobacco. Jim sang sacred songs for us and blessed us, all four of us, with the breathing of energy.
Felt amazingly revived and strong after.
Claude also came to give Reiki and body talk to Harry.
We took him off the IV, concerned with bloating. Now very concerned that black tarry toxins are clogging bowel, as no BM since Friday at 11 pm-12 am. I think he might be massively constipated - how to help him move this out?
Henry's most beautiful thing was the Sublato ceremony with Jim - very moving and so much energy.
But another very sleepless night (saturday), Harry back to vomiting off and on all night.
2 August 2009
Oh to have known that this was our last full day with our Prince Harry in this mortal world. Would I have savoured each moment a little bit more?
Henry and I were feeling pretty exhausted by this point. We had not had a solid night sleep in probably two weeks. Taking care of Harry 24/7 was starting to take its tole on us. It wasn't just the care for Harry. We did that gladly.
I remember when Cathy and Dr. Isreals were leaving, just before they went out the front door, Cathy turned back and asked, "Are you getting much sleep?"
I replied with a shrug, "No, but Harry's hasn't ever slept through the night in all of his 16 months, so I haven't really slept in 16 months, I'm used to it. There will be time to sleep when Harry is healed."
"Let us know, when it is getting to be too much. If you need help." Cathy insisted. "Call me anytime, if you need anything."
"We're fine. We'll manage just fine." I just couldn't imagine any kind of help, didn't want any strangers in our house right now.
It wasn't just the taking care of Harry that was so stressful. It was trying to figure out the best route to healing him that was taking its toll. When allopathic medicine runs out of treatment options, that is just it. They say, sorry very much, there is nothing more we can do. They offer palliative care and medicine to keep your baby *comfortable* in his last days.
We refused to simply give up on Harry because allopathic medicine had run out of their one option and given up. We have read too widely, experienced too many other cultures and ways of being, to simply accept the western, rational-scientific worldview as the final arbiter on life.
As wonderful as our medical system is (and I will defend the Canadian medical system against all critics), it does not allow very much at all for other modes of healing. Well, there is some latitude for alternative healing, but only as a secondary complement to allopathic medicine, for example, Reiki was offered at the hospital, but not as a genuine healing modality in and of its own right.
So we were basically on our own, trying to design a comprehensive alternative treatment healing regime for Harry.
When Harry was first diagnosed, I had picked up a book call, "The Field" by Lynn Mctaggart. This book explains the latest quantum physics behind the idea of what has been alternatively called the Zero Point Field, the Quantum field, the Divine Matrix or just the Field. It is far too complex to explain in this blog post. But, very simply, the idea is that we are immersed in a unifying energy field and we ourselves are fields of energy. Our energy fields are constantly 'downloading' information from the Universal Energy Field (UEF). This field contains all knowledge and memory, past, present and future. This is not science fiction. This is leading-edge quantum physics. But these ideas also unify the ideas of the ancient mystics and saint and modern quantum physics. In leading-edge quantum physics western science and spirituality meet and converge.
Our energy fields have been called chi, life force, prana.
Reiki, energy field work, acupuncture, qi-gong all work with our energy/ energy fields.
In simple terms, (though it is not nearly so simple and I am making a gross over-generalization here) disease is manifest as blockages in our energy fields and different types of alternative healing modalities work on breaking down and moving out those energy blockages.
So were were working on developing a mixture of intense oral vitamin treatment, dietary treatment, and naturopathic treatment (working with a naturopathic doctor here in Winnipeg and a second one in New Mexico). A neighbour is a Reiki master and he was giving Reiki and body talk to Harry, as was another friend. Henry took Level I and Level II Reiki to give it himself to Harry. I took Level I and II in a type of energy field work, called Way of the Heart. And of course, hundreds if not thousands of people were praying for Harry all over the world.
But trying to do all of this learning and research while also taking care of a critically ill child, and trying to somehow keep life normal for his 4 year old sister was very, very, very hard.
Janine has asked me since, "Did I know that Harry was dying?"
Poor Janine, in the week between when we made our plans for her to come from Toronto to help us out and her actual arrival, Harry got so sick so quickly. By the time she arrived on 2 August. He was so thin and frail and sick and weak. I am sure it was a huge shock to her to see him. We just saw our same Harry. Janine has commented to me that she could not believe the level of intensity and stress in our house when she arrived. We had no idea - it was just our life.
Did we know he was dying. No. Not really. You see, when you are pushed to a place at the very edge of life and death, living on that knife-edge, you only have one option. You have to choose. Hope or fear. There is not room enough on that thin edge for both. When you are looking into the abyss, you have to make a choice and the choice becomes very, very, crystal clear. We chose hope. We could not live with ourselves had we chosen any other way. We very intentionally chose to have hope and believe that Harry was healed.
I remember back in the winter, Russell, our minister at St. Mary's Road United Church, preached a sermon about one of the New Testament healing stories and the faith of a woman who had been experiencing hemorrhaging / bleeding daily for over 12 years. Through all of the 12 years of pain and suffering she never wavered in her hope and faith that God would heal her.
Upon seeing Jesus, I think she was one of the people who just touched his robe and either Jesus or one of the disciples asked, "Who touched my robe?" Seeing the woman Jesus said, in his customary fashion, "Your faith has healed you".
Russell talked about how, in our day and age, we would think this woman foolish for having such deep faith and hope in healing, through 12 long years of suffering. We would think it crazy that you would hold onto faith and hope in the face of such sickness. We would think it impossible for someone to be healed in an instant.
I remember thinking to myself during that sermon, "But you haven't been pushed to the edge, to that place where you have to make a choice. Where it is not theoretical. Where you have to choose between faith and hope or fear and darkness. When you are pushed to the edge, you choose hope and faith over falling into the abyss."
And so that is where we were. Sitting on the knife edge, precariously balanced on hope and faith.
But I have to admit, in Harry's last few days, doubts started creeping in. I think it was my sub-consciousness trying to prepare me for what it knew was to come.
My sister had sent a lovely new outfit for Harry for his birthday, but it had only arrived just around Henry's birthday, July 22. The last video we have of Harry is of him opening this gift. At the end of the video, I tried to hold the outfit up to Harry, but he fussed and pushed it away. Then he pointed to his toy school bus and wanted to hold and play with that instead. The outfit sat on our dining room table, I hadn't found time to take it upstairs yet. I remember walking past it once and the thought flashed through my mind, "That is the outfit I will put Harry in after he has died, because it will be new".
Immediately, I was angry with myself for the negative thought and I quickly "cancelled" it.
Thursday or Friday, I had a dream, or a waking dream, either while sitting outside with Harry or walking with him in my arms down the street, "This is getting too hard for all of us. It would be easier if Harry just dies. We'll be okay, Henry, Lydia and I. Lydia especially is so happy, she can cope. We can do it. It will be hard at first, but we can manage." I got so angry with myself for that thought. "What the fuck are you thinking, Cynthia? You know exactly how hard that would be. You know that it would not be easier than this. You do not want that". Again I quickly banished the thought.
But except for those few stray thoughts in Harry's final days, I really, honestly, right up till he passed over, believed he was healed.
Both Henry and I had this intense feeling that we just had to get through the weekend, and come Monday he would turn a corner and be healed.
I knew the vile black sticky stuff he was vomiting up had to all come out. It was the toxins, what was making him sick. We had to get it out. But I didn't know how. But I knew if we could just get it out he'd be okay. Or that was the very, very strong feeling that I had. Henry too, felt with certainty, that we just had to get through the weekend and Monday would be a turning point for Harry. The smell. It had a very distinctive smell. A chemical smell. Like all of the residual chemotherapy chemicals and the toxins were coming out. I will never, ever, forget that smell.
I wish I had known that that last night, Saturday August 2 2008, was the last night we would sleep with our wee Harry. I can still feel him between us, rolling between us, cuddling each of us. I remember at one point in the night, Harry was lying sideways across my tummy and chest. I stroked his head and whispered to him. "Daddy needs to feel you cuddle with him, Harry, go cuddle with Daddy." And he did.
I remember that last morning, the four of us in our bed. We can hear when Lydia wakes up and thumps out of her bed, hear her walking across her bedroom floor, hear her open her bedroom door. Harry always sat up and watched our door, with a big grin of anticipation on his face, eager to see his big sister. Lydia came bounding into our room, always the cheery morning person, "Good morning Hares-y-bares-y-boinga-boy". Henry got Lydia her morning bottle (yes, okay she still had a bottle at 4, we wanted to wean her off of it, but while her little brother was going through chemotherapy was not deemed a good time in our opinion!!!). Harry nursed and she drank her milk. Then I remember, so clearly, Harry sitting up and signing for water to drink. He drank from my cup at my bedside.
Harry still nursed, but to be gentle on me, he had started trying to wean himself his last two weeks. I know he really wanted to nurse, but he was holding back, to try to be gentle on me. In response, I started pumping to try to increase my milk supply and taking "mother's lactaflow" and other herbals to increase my milk supply. I was not going to deny him essential nutrients from my milk. I think he knew he was going, or that he had to go soon. So he wanted to be gentle on me. But I would have none of it. But in his last weeks he nursed less and less and as soon as he finished nursing, he would reach for his Dad. I was okay with that. I knew that Harry knew (and Harry knew that I understood) that he and Henry needed as much time together as possible. I was okay. It was okay with me, for him to reach for his Dad more.
And so in some ways. Our last full day with Harry was rather unremarkable. Except for of course the whole remarkable situation we found ourselves experiencing. It was just another day. Just another joyful, happy, beautiful, hopeful day with our Prince Harry.
2 August 2009 - We are Rainbow People
Harry's sign to us is a rainbow. I will tell you more about this in the coming days.
A few days ago, I asked Harry if he could send us some rainbows, just to once again let us know he is okay and always with us.
Saturday, we decided that we definitely wanted to go to church on Sunday. It was the first Sunday our church would be gathering after our month's holiday in July. I phone our florist to order flowers to have at church in memory of Harry. We choose a lovely summer bouquet called "Rainbow Bouquet". I phoned Russell and left a message, asking if he would be able to receive the flowers Sunday morning and if he could say some words of remembrance for Harry.
Oh boy, did he ever.
Russell did not know about our connection to Harry and rainbows. Yet, when we walked into the service, the 'theme photo' Russell had chosen to project above the alter for the service was a beautiful, bucolic country scene, a barn in a grove of trees, with a perfect double rainbow painting the sky above, and dominating the photo. Both Henry and I were stopped in our tracks when we saw the photo.
But more than the photo. Russell preached about a woman who once was very involved at one of his past churches. Her husband was not only an atheist, but rather rude and aggressive about it. He would criticize her every time she left for church. One of his favourite taunts was, "Oh are you going to visit your Rainbow People". He called us, us 'church folk' Rainbow People, because we are so darn optimistic, Utopian and so full of faith and hope.
Russell talked about how he wanted to disagree with this man, was ready to bring out his full arsenal of arguments against him, but was stumped. He had to agree. We are a Rainbow People. We are full of foolish, lavish, extravagant hope, faith, and belief that the world can be a better place, a place of love, of peace, of freedom, of harmony. Yes, indeed we are a Rainbow People.
And Russell's closing words were especially poignant, "Trust in Rainbows ... we are not alone".
Indeed, we are Rainbow People, we trust in Rainbows, and we are never, never, ever, alone.
Love,
Cynthia
Saturday, August 1, 2009
August 1 Last Year 2008
Friday August 1 2008
Lydia went to daycare all day - they were having a PJ party so she was quite happy to go.
Henry and I were home with Harry - today he started throwing up a black, yucky bile - sticky, smelly, awful stuff.
Good news - his bilirubin count was slightly down from Monday from 320 -> 306 - not huge but a glimmer that something is moving. But all day he could not keep anything down and even was vomiting up breast milk as soon almost as he nursed.
A very hard day - and nights are increasingly hard - Harry is so restless and really can't sleep much at all.
Lydia's beautiful thing was the PJ party at daycare.
Mine was Toni helping out with laundry and just dropping by to say hello and see how we're doing. It is such a huge help.
Henry's was chatting with Peter and Paula and getting the news about the bilirubin counts going down.
Saturday August 1 2009
This weekend is such a weekend of huge energy of change for my family. Exactly 4 years ago, 1 August 2005, my Mum's house burnt down - my childhood home. The very next day 2 August 2005, Henry, Lydia and I moved into our first house - our current house on Ruby Street. And of course, 3 August 2008 is Harry's Angel Day.
Harry got so sick so quickly. It happened so fast we both couldn't possibly see and comprehend what was happening. On July 18th we received the news that his chemo was no longer working and there was nothing more the oncologists could do for him. But at that time even they thought he might have months left to live. We certainly were not willing to just give up, simply because *they* had exhausted their allopathic options.
We were trying everything we could think of - intense Reiki, intense naturopathy, intense energy field work, prayer, prayer and more prayer, meditation, intense vitamin therapy. We would have tried anything for Harry, as long as it wouldn't have hurt him. We had just started working with a naturopathic doctor from New Mexico, who has successfully treated many rare and 'hopeless' cancer cases. She had sent us an intense liver detox for Harry. Her analysis had found that Harry was suffering from a toxic levels of heavy metals and estrogen. Around July 22 or 23 we had started him on a detox for this, for which he took about 10 different liquid medicines each day. Some of these we could give to him directly in his mouth by eye dropper. And after the first few days of getting used to it, he would open up so nicely to take the medicine.
The difficult thing, and I have read about other cancer patients who had a similar experience, it is nearly impossible to distinguish a successful detox from a worsening health situation. That is, patients who are successfully detoxing very often undergo the same set of symptoms as someone whose cancer is overtaking their systems. The fact that his bilirubin count had come down, against all expectations of his oncologist, gave us hope that the detox was doing something positive for him.
So we were working with two competing narratives. The one from the oncologists, which said that Harry was dying. And the one from the naturopathic doctor, who said that while, yes, Harry was very sick, he was also detoxing and the symptoms we were seeing, including the vomiting of the vile black substance was also a part of detox. I think we partially believed both narratives and so our only recourse was to simply stay positive, have hope and continue to believe that Harry could beat this cancer. Some way, some how, he could do it.
For about the last week of his life, Harry slept on and off pretty much most of the time, day and night. Henry and I simply took turns, 24 hours a day, every day, holding him. I can't remember exactly when, but in his last weeks he had started sleeping with us. It was gradual. It just got more and more difficult to, first get him to settle at 11:00 pm when he woke to nurse and then even to get him to sleep. So we just adapted by keeping him with us always. We would take turns sleeping really. He lay between us and he would cuddle with me for an hour or so, sleeping fitfully and they roll over, really throw himself onto his dad's neck - just cuddle in with all his little might, into his dad's arms and chest. He'd sleep with his Dad for an hour and then switch back to cuddling we me.
We know that, in those moments, he was telling us just how much he loved us. It was in the way he almost threw himself between the two of us, as if he couldn't bear to not be touching one of us for even a moment. He would especially wrap himself around Henry's neck, his arms, almost his whole upper body, wrapped like a wee scarf around his Dad's neck, to just be as close as he could possibly get to his Dad.
And I can still see him, sitting up in bed between us, silhouetted in the night shadows, doing his baby sign for milk in the middle of the night. He was such a little sweetie, he would first tap his chest to ask "please" and then ask for "milk". I nursed him his whole life, right up until the last hour before he passed over.
It was also, I think, thought I am not 100% sure if it was today or the day before, but I think it was today, because it was during the day and Lydia was not at home, that Harry gave Henry one of the biggest gifts he could give.
Harry could do a number of baby signs - "please" " thank you" "all done" "more" "milk" "where is?" "light" "hello / bye-bye", but he only ever said three words.
He started saying "Mum" quite early - at about 8 months. I wasn't sure if that was really what he was saying. I remember when he first started to crawl at 8 months. He would follow me around the house and say, "Mum-mum-mum". I was never sure, was he babbling? Just saying, "source of milk get back here"? Or was he really saying Mum? But he kept it up and later, it was apparent that he was indeed saying Mum to mean me.
The second word he said was not so much one word, as a catch all phrase for what he wanted - "dat dat dat". Harry was a great 'pointer'. From somewhere around 13 months old he started pointing to everything he wanted and saying "dat dat dat" - always leaving it up to us to guess exactly what "dat dat dat" was and pointing and saying "dat dat dat" more insistently until we picked up what ever thing it was he wanted. For example, often he'd point to a whole pile of toys and say, "dat dat dat" and get really indignant when we didn't figure out right away, which toy he was precisely pointing to - it was obvious in his mind!
His third and final word, was his last gift to his Dad. I am sure he gave it to Henry a year ago today.
I was sitting on the couch holding Harry and Henry came into the living room, ready to take over for a turn holding Harry.
That one and only time, I could just feel Harry work up all of his strength, and he reached up his arms from his spot sitting in my lap, up to Henry's waiting arms and, mustering every ounce of his wee strength, Harry very, very, distinctively said, "Papa".
It took so much effort for him to say it, to have the energy to say it. It came out with such force, but it was so clear, "Papa".
I remember Henry and I were both stunned. We both said at the same time, "Did you hear that? Did he just say Papa?"
He was only able to say it once. But I know he so clearly wanted Henry to know that he knew just exactly who he was and how special he was to him. He knew Henry was his "Papa".
Lydia went to daycare all day - they were having a PJ party so she was quite happy to go.
Henry and I were home with Harry - today he started throwing up a black, yucky bile - sticky, smelly, awful stuff.
Good news - his bilirubin count was slightly down from Monday from 320 -> 306 - not huge but a glimmer that something is moving. But all day he could not keep anything down and even was vomiting up breast milk as soon almost as he nursed.
A very hard day - and nights are increasingly hard - Harry is so restless and really can't sleep much at all.
Lydia's beautiful thing was the PJ party at daycare.
Mine was Toni helping out with laundry and just dropping by to say hello and see how we're doing. It is such a huge help.
Henry's was chatting with Peter and Paula and getting the news about the bilirubin counts going down.
Saturday August 1 2009
This weekend is such a weekend of huge energy of change for my family. Exactly 4 years ago, 1 August 2005, my Mum's house burnt down - my childhood home. The very next day 2 August 2005, Henry, Lydia and I moved into our first house - our current house on Ruby Street. And of course, 3 August 2008 is Harry's Angel Day.
Harry got so sick so quickly. It happened so fast we both couldn't possibly see and comprehend what was happening. On July 18th we received the news that his chemo was no longer working and there was nothing more the oncologists could do for him. But at that time even they thought he might have months left to live. We certainly were not willing to just give up, simply because *they* had exhausted their allopathic options.
We were trying everything we could think of - intense Reiki, intense naturopathy, intense energy field work, prayer, prayer and more prayer, meditation, intense vitamin therapy. We would have tried anything for Harry, as long as it wouldn't have hurt him. We had just started working with a naturopathic doctor from New Mexico, who has successfully treated many rare and 'hopeless' cancer cases. She had sent us an intense liver detox for Harry. Her analysis had found that Harry was suffering from a toxic levels of heavy metals and estrogen. Around July 22 or 23 we had started him on a detox for this, for which he took about 10 different liquid medicines each day. Some of these we could give to him directly in his mouth by eye dropper. And after the first few days of getting used to it, he would open up so nicely to take the medicine.
The difficult thing, and I have read about other cancer patients who had a similar experience, it is nearly impossible to distinguish a successful detox from a worsening health situation. That is, patients who are successfully detoxing very often undergo the same set of symptoms as someone whose cancer is overtaking their systems. The fact that his bilirubin count had come down, against all expectations of his oncologist, gave us hope that the detox was doing something positive for him.
So we were working with two competing narratives. The one from the oncologists, which said that Harry was dying. And the one from the naturopathic doctor, who said that while, yes, Harry was very sick, he was also detoxing and the symptoms we were seeing, including the vomiting of the vile black substance was also a part of detox. I think we partially believed both narratives and so our only recourse was to simply stay positive, have hope and continue to believe that Harry could beat this cancer. Some way, some how, he could do it.
For about the last week of his life, Harry slept on and off pretty much most of the time, day and night. Henry and I simply took turns, 24 hours a day, every day, holding him. I can't remember exactly when, but in his last weeks he had started sleeping with us. It was gradual. It just got more and more difficult to, first get him to settle at 11:00 pm when he woke to nurse and then even to get him to sleep. So we just adapted by keeping him with us always. We would take turns sleeping really. He lay between us and he would cuddle with me for an hour or so, sleeping fitfully and they roll over, really throw himself onto his dad's neck - just cuddle in with all his little might, into his dad's arms and chest. He'd sleep with his Dad for an hour and then switch back to cuddling we me.
We know that, in those moments, he was telling us just how much he loved us. It was in the way he almost threw himself between the two of us, as if he couldn't bear to not be touching one of us for even a moment. He would especially wrap himself around Henry's neck, his arms, almost his whole upper body, wrapped like a wee scarf around his Dad's neck, to just be as close as he could possibly get to his Dad.
And I can still see him, sitting up in bed between us, silhouetted in the night shadows, doing his baby sign for milk in the middle of the night. He was such a little sweetie, he would first tap his chest to ask "please" and then ask for "milk". I nursed him his whole life, right up until the last hour before he passed over.
It was also, I think, thought I am not 100% sure if it was today or the day before, but I think it was today, because it was during the day and Lydia was not at home, that Harry gave Henry one of the biggest gifts he could give.
Harry could do a number of baby signs - "please" " thank you" "all done" "more" "milk" "where is?" "light" "hello / bye-bye", but he only ever said three words.
He started saying "Mum" quite early - at about 8 months. I wasn't sure if that was really what he was saying. I remember when he first started to crawl at 8 months. He would follow me around the house and say, "Mum-mum-mum". I was never sure, was he babbling? Just saying, "source of milk get back here"? Or was he really saying Mum? But he kept it up and later, it was apparent that he was indeed saying Mum to mean me.
The second word he said was not so much one word, as a catch all phrase for what he wanted - "dat dat dat". Harry was a great 'pointer'. From somewhere around 13 months old he started pointing to everything he wanted and saying "dat dat dat" - always leaving it up to us to guess exactly what "dat dat dat" was and pointing and saying "dat dat dat" more insistently until we picked up what ever thing it was he wanted. For example, often he'd point to a whole pile of toys and say, "dat dat dat" and get really indignant when we didn't figure out right away, which toy he was precisely pointing to - it was obvious in his mind!
His third and final word, was his last gift to his Dad. I am sure he gave it to Henry a year ago today.
I was sitting on the couch holding Harry and Henry came into the living room, ready to take over for a turn holding Harry.
That one and only time, I could just feel Harry work up all of his strength, and he reached up his arms from his spot sitting in my lap, up to Henry's waiting arms and, mustering every ounce of his wee strength, Harry very, very, distinctively said, "Papa".
It took so much effort for him to say it, to have the energy to say it. It came out with such force, but it was so clear, "Papa".
I remember Henry and I were both stunned. We both said at the same time, "Did you hear that? Did he just say Papa?"
He was only able to say it once. But I know he so clearly wanted Henry to know that he knew just exactly who he was and how special he was to him. He knew Henry was his "Papa".
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