Sebastien Eryk Neudoerffer Venema arrived this morning, Thursday March 25, 2010, at 6:28 am, after a quick 4 hours of labour. We got to the hospital at 6:00 am - things moved *very* fast between 5:00 am when I called the midwife to let her know I was in labour and 6:00 am when we got to the hospital. He weighs 7 lbs and is 19" long and already nursing like a trooper. Best of all I delivered a healthy looking and intact placenta MYSELF (though it took nearly as long as Sebastien to come out!). We are already at home and feeling wonderful.
Will post pics when we can.
Love,
Cynthia, Henry, Lydia, Angel Harry & Sebastien.
Thursday, March 25, 2010
Monday, March 8, 2010
Awaiting the Baby
Me - 38 weeks pregnant with Baby Sebastien & in desperate need of a haircut (I'm getting one this afternoon).
I am now 38 weeks pregnant. I am decidedly 'done' and ready for my reward for nine long months of work - my precious wee boy! It has been a truly wonderful pregnancy. I have felt fantastic, slept well, avoided nausea, had no cravings or food aversions and in general have just felt so positive, optimistic, energetic and happy the entire pregnancy.
But all that said, I am done. The past week, I am no longer sleeping well, yes I know, practice for the sleep deprivation that lies ahead, but I'm at the point where I want to have the baby before I get too tired! The only comfortable sleeping position is on my left side, but after a few hours in that position my hips ache. I have to pee every few hours. I find I am so hot at night, which is unusual for me, but I think not helped by the fact that I am sleeping on top of one of Lydia's old rubber mattress protectors, to protect our new mattress just in case my water breaks in the middle of the night. Henry has to help me up off the couch or out of the car so I have definitely hit the "feeling like a beached whale" point of pregnancy.
I'm excited about the upcoming birth. Of course anxious too. I will, as I did for both Lydia and Harry, attempt to have a completely natural childbirth with Sebastien, unless intervention is medically necessitated. Any woman who has given birth naturally will understand the mix of excitement and anxiety that I feel. I truly believe that natural childbirth is the hardest, most intense work a woman can do in her life. While modern medicine does keep us very safe here in Canada, the fact remains that in childbirth, we do put ourselves in the exceedingly rare situation in our modern life of having to push ourselves to the edge and actually go to a place where we literally walk the line between life and death. I am anxious about having to go through the experience again, but at the same time, so excited to push myself in this way and to be given the honour of this experience with my baby.
In childbirth I have experienced the true depths of my power as a woman. I have gone into that other realm in the service of my child, fought through the depths of pain, and safely brought them through the veil, from the other side, and into this physical world of ours. It is such a privilege and honour to do this for my child. It is hard, hard, work, but with such great rewards, one of which, for me, has been to know and understand the depths of my own strength.
I suppose that is one of the places from which my strength comes. People often ask me, "Where did you find the strength to face your journey with Harry?" And I know one of my answers has always been, "Because I have given birth to Lydia and Harry - having given birth twice I know I can do anything!". I especially so clearly recall, after Lydia's birth, feeling so empowerd and in awe of all women who were mothers and feeling like, "Ah, I now know the secret, I can do anything, I have given birth".
I am also so interested to see what I will learn and experience through Sebastien's birth. While I am obviously a major participant, it is, ultimately, HIS birth experience. And my best intentions aside, his birth will be what *he* needs to experience and will be driven by his intentions, quite aside from my own. It will be dominated by his energy and who he is - and I am so excited to experience this and to get to know him in this way.
Lydia and Harry's births were very, very different, yet each so clearly matched their personalities and energies. I have always said that Lydia came to teach me patience and the ability to let go of my own false expectations, both of myself and of others. Her birth was an act of patience, but also of completely letting go of all of my expectations of how birth 'should' be and instead accepting the experience as it simply was. My body was so overwhelmed by Lydia's powerful energy and she demanded that things be done her way from the start! Harry's birth, in contrast, was a quick and easy 3 hours from the time that my contractions started till his birth - almost too quick! Everything about Harry's life was tinged with compassion - starting with his birth.
So I am so excited to experience Sebastien's birth and the first hints of his personality, of his energy, of what he has come to learn and what he has come to teach me.
The other emotion I am strongly feeling is that sense of deja vu - that sense of surreality that has run through our lives these past two years. It is a feeling of 'back to the future'. Three years ago we were the three of us, Lydia, Henry and I, waiting in March for our new baby to be born. Harry has been born, lived and died and now here we are again Lydia, Henry and I, waiting in March for our new baby to be born. I have to shake my head to remind myself that it is all real and that yes, Harry was real, I didn't just dream his whole life.
Every now and then, I catch a flash of the 'Harry that should have been'. Not too often, Henry and I agree, it is generally far too painful to let ourselves go there and it is to no avail. There is only pain in imagining a different path with Harry and imagining doesn't help any of us. It won't change what happened and it certainly won't bring Harry back, it just brings us to a place of unimaginable pain. But nonetheless, every now and then, I do slip into that place. We are upstairs getting Lydia ready for bed and in my mind's eye I catch a flash of the little blond head that should be chasing Lydia down the hall in his PJs not quite ready for bed, story book in hand, demanding that we read in his bed tonight. Or I see the other just-turned-three or nearly-three-year old boys in the neighbourhood or at church and then I can so clearly see the blond head that should be walking beside me to take Lydia to school or squirming in my lap during the sermon. In those moments we are confronted full force with the reality of what we have lost and it is almost too much to bear.
We have tried so intentionally to focus on the good parts of the experience of Harry's life. To focus on all the blessings he gave us and on all of the positive lessons we have learned. To make sure that we are better, happier, stronger, more compassionate and loving people for our experience with Harry. To not let his life have been lived in vain. But some moments, all of that still falls away and I am still overwhelmed with sadness and grief over his passing. It is moments now, no longer full days. I can move through it more quickly, though the intensity of the grief does not lesson. How can he not be here? How could his life have unfolded the way it did? What if we had never taken him to the hospital? Would he, like Schrödinger's cat, unobserved in the box, have remained healthy? Did the act of observation of his illness set or force the quantum wave collapse into the particle reality of him being sick? I know the 'what if' game gets me nowhere and does not help and I try to avoid getting sucked in, but, oh, what if, what if my beautiful blond-haired, big blue-eyed boy Harry were here, eagerly awaiting the birth of his baby brother along with the three of us?
Instead, I pray every day for Harry to watch over his brother in 'waiting-to-be-born heaven'. To reassure him, as only Harry his big brother can, that while he is leaving a place of love, he is coming to a place of love too. That he will be born surrounded by love and into love and through love. I am comforted by the thought that the last thing Sebastien will 'see' in heaven before he comes to us is his big brother and when he opens his eyes here, the first thing he will see are the loving faces of his Mummy, Pappa and big sister Lydia.
I am ready. I am ready to face this next step in the adventure we call life. Ready to push myself to the limits, ready to meet my new son.
Love,
Cynthia
Wednesday, February 24, 2010
The Worst Day of Our Lives - 2 Years Later
February 24, 2010
Diagnosis Day - two years later. Henry and I concur, it marks the worst day of our lives. I wrote the following story a year ago. But for some reason I couldn't post it at the time. A year later, it is that much longer ago and I can handle posting it.
So much has happened in the two years since Diagnosis Day. It is 11:25 in the morning here in Winnipeg - a sunny day, Lydia will come home for lunch at noon. I am sitting on the couch in our new kitchen / family room, the 2010 Vancouver Olympics on the new TV, 36 weeks pregnant with Harry’s little brother. I thought I was going into labour last night, though it is more likely that the Indian food we ate for dinner did not agree with Baby S. At any rate, neither Henry nor I could sleep, awoke at 3:00 am to find the bed empty beside me. My back was really hurting and I had a wicked cramp in the my lower right side, so I went downstairs to find Henry. He came upstairs to give me a back rub. I have never had back pain like this before, was this back labour? I could not get comfortable - something else that was unusual. The only comfortable position I could find was sitting up in bed. So I tried to sleep sitting up - I think I fell asleep finally by 5:30 or 6:00 am. I had the overwhelming feeling of panic that I just *have* to pack my bag for the hospital tomorrow. I have never had a bag ready for either Lydia or Harry’s birth - we’d planned (and had) a home birth with Lydia (before we had to have an emergency transfer to the hospital for her retained placenta) and Harry was 3 weeks early - and I hadn’t yet packed my bag. So today I will.
I kept telling Sebastien, “Not today, you can’t be born today, not on this anniversary”. Good boy - he listened to Mommy!
Fortunately, I feel better this morning. I’ll see my midwife this afternoon. I am wondering if Baby S has just shifted and is settling down for birth - I am feeling kicks right in the middle under my ribs - when he has always been lying not quite head down (head to the right side) and I was feeling kicks on my right side. We’ll see.
Indeed (now it is nearly midnight) - some of my discomfort might have been Baby S’s movements - he has dropped and is head down and engaged ... am feeling lots of kicks right under my ribs in the middle - different from usual. Am measuring 36 inches and tomorrow I start week 37. So could be soon! Didn’t quite get my bag packed today - but will finish that tomorrow.
Love,
Cynthia
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February 24th, 2009
This morning we used the very last baby wipe in the house to wipe Lydia after her morning pee. We have no more baby wipes in the house. Just three or four empty Huggies baby wipes boxes. When I went into the water closet and saw the open lid on the wipes box, I sighed a sigh of resignation. We are done with wipes. We really have no more need for baby wipes. I had bought a big refill box just before Harry died. We have now worked our way through the seven packages of refills.
Every time I used a wipe, the smell reminded me of Harry. The smell of changing his diapers.
Today I pulled out our brand new box of ‘big girl flushable wipes’ we bought on Friday at Superstore for Lydia. Lydia is like her mum and gets very upset with her Dad when he flushes wipes which are clearly marked “do not flush” into our easily clogged and overflowing toilet. So we now have a brand new box of flushable wipes. Harry never used flushable wipes.
Today Lydia will go to school and daycare. I’ll go to the University. Henry will go to work. Lydia and I will go to Kindermusik, then the three of us will rush to catch as much of Jack Rabbits Hockey as we can. Today will pass and move into tomorrow.
But this is not just today. This is a year since Diagnosis Day.
Diagnosis Day
Exactly a year ago today, almost exactly at this moment, we were given Harry’s diagnosis.
I have replayed and replayed that moment in my head. I wish I could turn it off, but I know it will never go away. Of course, in some way I don’t want it to go away. I want every moment of my life with Harry carefully and perfectly preserved.
We were on CK4.
It was only about an hour after we had come back from the CT scan. Quick news is rarely good news.
I suppose the empty radiology department should have alerted us to the gravity of the situation, that and the fact that they had bought in a radiologist and technician on a Sunday morning to perform a CT scan that couldn’t wait even one more day. But you don’t think these clear thoughts at a time like this.
Henry was sitting in the chair by the window. I was standing beside Harry and the crib, with the side of the crib down when Dr. M walked into the door, clutching a pile of papers in his left hand.
One look on his face said it all.
“I am sorry, it does not look very good,” he said, his eyes dangerously close to glassing over and brimming with tears. “There is a massive tumor in his liver and it has spread to his lungs”.
I collapsed on the end of Harry’s crib.
“NO!” I screamed. “Not Harry, not my Harry, No, No, No, No, No, No, No, No, No, No. Not my Harry.”
Dr. M left to give us some privacy.
I was overwhelmed with tears. I couldn’t stand up. My legs simply folded underneath me. No. It was not possible. Not my Harry. Take it away. Make it go away. Take those words back. Not my Harry.
I screamed and sobbed over and over, “Not my Harry. Please not my Harry”.
And my darling wee Harry. He sat in his onesey on the crib. Little arm immobile on the IV board. He sat with his big blue eyes, silently looking at me. Not saying a sound. Silently looking at his sobbing Mummy. His blue eyes just looked at me questioningly, “What is the matter, Mummy? Why ever are you crying, Mummy?”.
Henry stormed out of the room to track down Dr. M, who was at the nurses’ station just outside our door. I could hear them talking outside of Harry’s room.
“How, what could have caused this?” Henry demanded to know. “Was it the baby food?”
We had tried a new brand of organic baby food since November. Very recently a number of batches of cereal had been recalled because it was rancid. It turns out we had been feeding Harry from three of the rancid boxes. I hadn’t noticed. Have you ever tasted baby cereal? It tastes blah and like cardboard. So I didn’t think anything of this new brand which, like all the others, tasted blah and like cardboard. Maybe if only one of the boxes had been rancid I would have noticed. But all three were and all three smelled the same. It was a new cereal, so I didn’t know that it didn’t smell the way it was supposed to smell. I am not sure if it was rancid so much as just stale.
At any rate, Henry was terrified that somehow ingesting this cereal had caused Harry’s liver cancer.
I could hear Dr. M reassure Henry, “There is no way this has been caused by baby cereal.”
Henry was not so easily dissuaded, “How can you be sure? How can you know? I did some research yesterday night and rancid cereals can cause liver cancer”.
Dr. M gently replied, “Put it out of your mind, that is not the possible cause. I think your wife needs you.”
I guess I had been sobbing, wailing and crying the whole time during this conversation.
In that moment, our world fell apart. We had been walking between two of many possible futures and in that moment we jumped, from the world we had been living in, the “Mommy, Daddy, Lydia and Harry perfect family universe” to the “Mummy, Daddy, Lydia, Harry-has-cancer-family-on-the-edge-of-a-nervous-breakdown universe”.
Henry came back into the room. He picked up Harry. Harry still maintained his sweet silence and looked at us, his sobbing parents, with his big blue eyes and his quizzical look on his face.
My phone rang. I answered. It was my friend Jodi. Was everything okay, she wanted to know?
“Jodi, oh my God, Jodi, Harry, Harry, Harry has cancer. They just told us Harry has cancer.” The words spilled out in a jumble. My heart raced. The room spun. Harry has cancer. I remember kneeling on the pull out chair-bed by the window.
“Wait, wait, what do you mean? Cancer? He has cancer? I’ll come right away. Where are you. I’ll come right away.”
I don’t completely remember if I have the details of that conversation, or any conversation really for that matter, completely correct. But I know that is the gist of what was said.
We knew we had to phone our families.
I think the hardest thing for both of us was telling our parents. We both dreaded more than anything telling our parents that their wee Grandson had cancer and it did not look very good.
I was so worried for my Mum. I dreaded telling my Mum. We were still reeling from her house fire in 2005 and her heart attack a year ago. How could I tell my Mum, my dear sweet Mum, who had lost her own husband to cancer thirty years ago, that it was all happening again. But it was Harry, my wee Harry, this time?
I have been told by many people through out this experience with Harry that I am a strong person. I don’t really know what that means. I just do what I know how to do. I suppose if I know what to do, it is because I come from a family of very strong women. Women who are quiet, shy, rather reserved, don’t announce their presence in the world or demand a great deal of space or attention. But women who silently, in their quiet, patient way, work and do and hold up the worlds of others.
I talked to my sisters, one in Poland and one in France. The conversations are a blur, except for the two times I said those words, “Harry has cancer. Liver cancer. It has spread to his lungs, it does not look good”. We didn’t know the words ‘stage four cancer’ or ‘primary rhabdoid tumor of the liver’ yet, those were to come.
We agreed that we could not let my Mum be alone to hear this news. I think it was Cecelia, my big sister Cecelia, always in control and always knowing what to do. Said she would phone my Aunt Phyllis and Uncle Murray in Mississauga to see if they could drive to Guelph to be with my Mum this afternoon, so that they could be there when I gave Mum the news. I come from that kind of family, where we can phone up our Aunt and Uncle on a Sunday morning and give them terrible news and ask them to jump in their car and drive for 45 minutes to be with my Mum. And they do it, without question and without hesitation.
The second hardest thing I have ever had to say to my mother was, “Mum, we got the CT scan results and it does not look good. Harry has cancer”.
Jodi arrived. Kathleen and Gareth arrived. Dave and Grace arrived.
Sometime in between all of their arriving we met Dr. Stoffman. Harry’s oncologist.
We had our first meeting with Dr. Stoffman in a tiny closet of an office on CK4. We were shaken to our very core, raw, full of disbelief, stunned ... cancer, Harry has liver cancer, none of this made any sense. He had the flu, he just wasn't getting better from a nasty flu.
At this first meeting, Dr. Stoffman told us that, thought they would have to do a biopsy surgery to know for certain, their first guess was that Harry had 'hepatoblastoma' a childhood liver cancer. His cancer was a Stage 4 - which meant it had spread or metastasized from the original site to his lungs and lymph nodes and because of the extent of the liver tumor, around 80% and all four lobes of his liver were involved, surgery was not an option at this point. Harry would need chemotherapy to shrink the tumor first then we would attempt to surgically remove the tumor.
This was the best case, we would do 4-6 rounds of chemotherapy and the metastatic disease would be gone and the tumor would have shrunk enough to allow for a complete resection. While you can't live without a liver, livers do grow back - you can remove most of a liver and it will grow back in a couple of months.
I think one of my first questions was about a transplant, "Can I give him part of my liver? You can transplant part of a liver right? I can give him part of my liver?" I would have done it in a heart beat for my son. I think his answer was something like, "let's not get too far ahead of ourselves".
"What are his chances?, What are his odds?" we wanted to know.
"A Stage 4 Hepatoblastoma diagnosis has around a 20% survival rate".
There was a glimmer of hope, that was all I needed, the faintest, palest glimmer.
I can't recall what else Dr. Stoffman told us that first meeting. But I do remember leaving the little room and going back to Harry's room feeling like I had been hit by a truck, but also relieved. After two terrifying days, we at least knew what we were facing.
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Harry’s Journey
Later that evening we were transferred up to a room on CK5, the hermetically-sealed oncology ward at Children’s Hospital. One of the first things I noticed was the smell. The ward has a very particular smell. I came to identify that smell with the smell of chemotherapy chemicals, slowly dripping down IV tubes, into central lines, embedded into tiny chests.
That night, alone on CK5, sleeping on the pullout chair beside Harry’s crib. That night I prayed as I have never prayed before.
In the dark, with only the blue light from the display of the IV monitor illuminating the room. I held Harry in my arms and I prayed. I wept and I prayed.
“God, I don’t know how to do this. Help me God. I don’t know how to do this. Please God, you have to help me do this”.
Unfocused at first, but then the prayer settled into a sort of mantra.
“Oh God, oh Jesus. Please carry me. Please hold me. I can carry my son. I know I can carry my son through this, but I need help. I need someone to carry me so I can carry my son.”
In my mind I saw the footsteps in the sand along the beach. From the famous poem, where the one set of footsteps represents the times when Jesus carried the petitioner. I saw us three walking along the beach. Me carrying Harry and Jesus carrying me.
“Please hold me Jesus. Please carry me, as you have carried so many others. Please carry me so that I can carry my son. Please help hold me up, please give me strength, so I have the strength to carry my son.”
And then.
“God, I don’t know how to do this. Show me the way God. Please show me the way. I will carry my son. I will hold my son. I can do that. I can hold him through this. But please hold me and guide my steps. Please show me the way.”
I stood holding Harry for at least an hour. Praying that same prayer over and over and over. The words spilling out of my mouth, rocking rhythmically back and forth with Harry pulled close to my chest. My eyes clenched shut, tears streaming down my face.
“Please hold me God. Please carry me God. Please hold me so I can hold up my son. Show me the way God. Please show me how to do this. I don’t know how to do this. Please show me the way.”
Eventually Harry fell deeply asleep, and I exhausted, put him gently in his crib, collapsed into the pull out chair-bed, and fell into a fitful and restless sleep.
That night I had a dream.
I saw a map on the wall. It was like an old-fashioned treasure map that you see in a children’s adventure movie. Aged and worn brown paper, the edges all black and burnt.
The top of the map was entitled, “Hendrik’s Journey”.
On the left side of the map was an ‘X’, a marking of “You are here”. On the far right side of the map was our destination, marked with the words, “Harry is healed”. Vast, open, empty brown space stretched in between, in between our start and our destination. We were four little figures on the map. In the dream we started walking, little figures moving along the brown parchment, as we walked obstacles appeared before us. Obstacles for us to tackle. We were followed by our path, marked out behind us by a dotted black trail.
I was being shown how to walk the journey, from here to the place where ‘Harry is healed’. One day at a time. We would face each obstacle as it came, we would deal with each one in turn, but we would never lose sight of where we were going. No matter what mountain or stream appeared in our path. We would keep our sights trained on our destination, “Harry is healed”. Step-by-step we were going to get there. There was no other alternative destination. No other place to go. The path would be revealed as we journeyed, but the destination was ever-clear. We were going to the place where “Harry is Healed”.
I woke up in the morning and remembered the dream. I knew in an instant. This is how you’ll do it. This is how you will walk Harry’s journey. I knew exactly how to do this. I had just done this. Suddenly, it felt like, this is the whole reason why I did my doctoral thesis. So I would know how to do this. So I would know how to walk this journey with my son.
When Harry was born I knew that I had to finish my doctoral thesis by December 31, 2007. I had to have my thesis defense before Christmas and have the final draft of the thesis submitted for binding to the university before the final cut-off date in late December. I had no idea how I was going to do it. I simply set in my mind that I was going to defend in December. I would not think about how much I had to do, about how I was going to get it done. I simply set the destination and refused to let any other thought enter my head than that I would defend my thesis in December.
And then I focused, day-by-day. Each day, I worked a little bit. I never let myself think too far ahead, I focused on the day. If I thought too much about how much work I had to do with a newborn and a three-and-a-half year old to manage I would become paralyzed with fear. So I didn’t think about it. I put my head down, literally and figuratively, and worked four or six hours each day, during naps, once the kids were in bed. Slowly, I chipped away at it. When anyone asked, especially when a committee member asked, I insisted, I was going to defend in December, if not earlier. And I did it. I defended on Tuesday December 18th and submitted my thesis for binding a whole day early, on Thursday December 20th.
That honestly felt like the whole reason why I had toiled for eight years to finish my doctoral thesis. I felt like, if I never, ever, use the damn thing, it will have been worth it just to learn this lesson. That one lesson about how to accomplish the impossible. Set the goal, never let it out of your sight, and then just walk one day at a time to get there.
I remember telling Henry later that day that I now knew how we would do this. We would call it ‘Hendrik’s Journey” just like in my dream and we would walk it together, one day at a time.
And so that is how ‘Hendrik’s Journey’ officially began.
Diagnosis Day - two years later. Henry and I concur, it marks the worst day of our lives. I wrote the following story a year ago. But for some reason I couldn't post it at the time. A year later, it is that much longer ago and I can handle posting it.
So much has happened in the two years since Diagnosis Day. It is 11:25 in the morning here in Winnipeg - a sunny day, Lydia will come home for lunch at noon. I am sitting on the couch in our new kitchen / family room, the 2010 Vancouver Olympics on the new TV, 36 weeks pregnant with Harry’s little brother. I thought I was going into labour last night, though it is more likely that the Indian food we ate for dinner did not agree with Baby S. At any rate, neither Henry nor I could sleep, awoke at 3:00 am to find the bed empty beside me. My back was really hurting and I had a wicked cramp in the my lower right side, so I went downstairs to find Henry. He came upstairs to give me a back rub. I have never had back pain like this before, was this back labour? I could not get comfortable - something else that was unusual. The only comfortable position I could find was sitting up in bed. So I tried to sleep sitting up - I think I fell asleep finally by 5:30 or 6:00 am. I had the overwhelming feeling of panic that I just *have* to pack my bag for the hospital tomorrow. I have never had a bag ready for either Lydia or Harry’s birth - we’d planned (and had) a home birth with Lydia (before we had to have an emergency transfer to the hospital for her retained placenta) and Harry was 3 weeks early - and I hadn’t yet packed my bag. So today I will.
I kept telling Sebastien, “Not today, you can’t be born today, not on this anniversary”. Good boy - he listened to Mommy!
Fortunately, I feel better this morning. I’ll see my midwife this afternoon. I am wondering if Baby S has just shifted and is settling down for birth - I am feeling kicks right in the middle under my ribs - when he has always been lying not quite head down (head to the right side) and I was feeling kicks on my right side. We’ll see.
Indeed (now it is nearly midnight) - some of my discomfort might have been Baby S’s movements - he has dropped and is head down and engaged ... am feeling lots of kicks right under my ribs in the middle - different from usual. Am measuring 36 inches and tomorrow I start week 37. So could be soon! Didn’t quite get my bag packed today - but will finish that tomorrow.
Love,
Cynthia
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February 24th, 2009
This morning we used the very last baby wipe in the house to wipe Lydia after her morning pee. We have no more baby wipes in the house. Just three or four empty Huggies baby wipes boxes. When I went into the water closet and saw the open lid on the wipes box, I sighed a sigh of resignation. We are done with wipes. We really have no more need for baby wipes. I had bought a big refill box just before Harry died. We have now worked our way through the seven packages of refills.
Every time I used a wipe, the smell reminded me of Harry. The smell of changing his diapers.
Today I pulled out our brand new box of ‘big girl flushable wipes’ we bought on Friday at Superstore for Lydia. Lydia is like her mum and gets very upset with her Dad when he flushes wipes which are clearly marked “do not flush” into our easily clogged and overflowing toilet. So we now have a brand new box of flushable wipes. Harry never used flushable wipes.
Today Lydia will go to school and daycare. I’ll go to the University. Henry will go to work. Lydia and I will go to Kindermusik, then the three of us will rush to catch as much of Jack Rabbits Hockey as we can. Today will pass and move into tomorrow.
But this is not just today. This is a year since Diagnosis Day.
Diagnosis Day
Exactly a year ago today, almost exactly at this moment, we were given Harry’s diagnosis.
I have replayed and replayed that moment in my head. I wish I could turn it off, but I know it will never go away. Of course, in some way I don’t want it to go away. I want every moment of my life with Harry carefully and perfectly preserved.
We were on CK4.
It was only about an hour after we had come back from the CT scan. Quick news is rarely good news.
I suppose the empty radiology department should have alerted us to the gravity of the situation, that and the fact that they had bought in a radiologist and technician on a Sunday morning to perform a CT scan that couldn’t wait even one more day. But you don’t think these clear thoughts at a time like this.
Henry was sitting in the chair by the window. I was standing beside Harry and the crib, with the side of the crib down when Dr. M walked into the door, clutching a pile of papers in his left hand.
One look on his face said it all.
“I am sorry, it does not look very good,” he said, his eyes dangerously close to glassing over and brimming with tears. “There is a massive tumor in his liver and it has spread to his lungs”.
I collapsed on the end of Harry’s crib.
“NO!” I screamed. “Not Harry, not my Harry, No, No, No, No, No, No, No, No, No, No. Not my Harry.”
Dr. M left to give us some privacy.
I was overwhelmed with tears. I couldn’t stand up. My legs simply folded underneath me. No. It was not possible. Not my Harry. Take it away. Make it go away. Take those words back. Not my Harry.
I screamed and sobbed over and over, “Not my Harry. Please not my Harry”.
And my darling wee Harry. He sat in his onesey on the crib. Little arm immobile on the IV board. He sat with his big blue eyes, silently looking at me. Not saying a sound. Silently looking at his sobbing Mummy. His blue eyes just looked at me questioningly, “What is the matter, Mummy? Why ever are you crying, Mummy?”.
Henry stormed out of the room to track down Dr. M, who was at the nurses’ station just outside our door. I could hear them talking outside of Harry’s room.
“How, what could have caused this?” Henry demanded to know. “Was it the baby food?”
We had tried a new brand of organic baby food since November. Very recently a number of batches of cereal had been recalled because it was rancid. It turns out we had been feeding Harry from three of the rancid boxes. I hadn’t noticed. Have you ever tasted baby cereal? It tastes blah and like cardboard. So I didn’t think anything of this new brand which, like all the others, tasted blah and like cardboard. Maybe if only one of the boxes had been rancid I would have noticed. But all three were and all three smelled the same. It was a new cereal, so I didn’t know that it didn’t smell the way it was supposed to smell. I am not sure if it was rancid so much as just stale.
At any rate, Henry was terrified that somehow ingesting this cereal had caused Harry’s liver cancer.
I could hear Dr. M reassure Henry, “There is no way this has been caused by baby cereal.”
Henry was not so easily dissuaded, “How can you be sure? How can you know? I did some research yesterday night and rancid cereals can cause liver cancer”.
Dr. M gently replied, “Put it out of your mind, that is not the possible cause. I think your wife needs you.”
I guess I had been sobbing, wailing and crying the whole time during this conversation.
In that moment, our world fell apart. We had been walking between two of many possible futures and in that moment we jumped, from the world we had been living in, the “Mommy, Daddy, Lydia and Harry perfect family universe” to the “Mummy, Daddy, Lydia, Harry-has-cancer-family-on-the-edge-of-a-nervous-breakdown universe”.
Henry came back into the room. He picked up Harry. Harry still maintained his sweet silence and looked at us, his sobbing parents, with his big blue eyes and his quizzical look on his face.
My phone rang. I answered. It was my friend Jodi. Was everything okay, she wanted to know?
“Jodi, oh my God, Jodi, Harry, Harry, Harry has cancer. They just told us Harry has cancer.” The words spilled out in a jumble. My heart raced. The room spun. Harry has cancer. I remember kneeling on the pull out chair-bed by the window.
“Wait, wait, what do you mean? Cancer? He has cancer? I’ll come right away. Where are you. I’ll come right away.”
I don’t completely remember if I have the details of that conversation, or any conversation really for that matter, completely correct. But I know that is the gist of what was said.
We knew we had to phone our families.
I think the hardest thing for both of us was telling our parents. We both dreaded more than anything telling our parents that their wee Grandson had cancer and it did not look very good.
I was so worried for my Mum. I dreaded telling my Mum. We were still reeling from her house fire in 2005 and her heart attack a year ago. How could I tell my Mum, my dear sweet Mum, who had lost her own husband to cancer thirty years ago, that it was all happening again. But it was Harry, my wee Harry, this time?
I have been told by many people through out this experience with Harry that I am a strong person. I don’t really know what that means. I just do what I know how to do. I suppose if I know what to do, it is because I come from a family of very strong women. Women who are quiet, shy, rather reserved, don’t announce their presence in the world or demand a great deal of space or attention. But women who silently, in their quiet, patient way, work and do and hold up the worlds of others.
I talked to my sisters, one in Poland and one in France. The conversations are a blur, except for the two times I said those words, “Harry has cancer. Liver cancer. It has spread to his lungs, it does not look good”. We didn’t know the words ‘stage four cancer’ or ‘primary rhabdoid tumor of the liver’ yet, those were to come.
We agreed that we could not let my Mum be alone to hear this news. I think it was Cecelia, my big sister Cecelia, always in control and always knowing what to do. Said she would phone my Aunt Phyllis and Uncle Murray in Mississauga to see if they could drive to Guelph to be with my Mum this afternoon, so that they could be there when I gave Mum the news. I come from that kind of family, where we can phone up our Aunt and Uncle on a Sunday morning and give them terrible news and ask them to jump in their car and drive for 45 minutes to be with my Mum. And they do it, without question and without hesitation.
The second hardest thing I have ever had to say to my mother was, “Mum, we got the CT scan results and it does not look good. Harry has cancer”.
Jodi arrived. Kathleen and Gareth arrived. Dave and Grace arrived.
Sometime in between all of their arriving we met Dr. Stoffman. Harry’s oncologist.
We had our first meeting with Dr. Stoffman in a tiny closet of an office on CK4. We were shaken to our very core, raw, full of disbelief, stunned ... cancer, Harry has liver cancer, none of this made any sense. He had the flu, he just wasn't getting better from a nasty flu.
At this first meeting, Dr. Stoffman told us that, thought they would have to do a biopsy surgery to know for certain, their first guess was that Harry had 'hepatoblastoma' a childhood liver cancer. His cancer was a Stage 4 - which meant it had spread or metastasized from the original site to his lungs and lymph nodes and because of the extent of the liver tumor, around 80% and all four lobes of his liver were involved, surgery was not an option at this point. Harry would need chemotherapy to shrink the tumor first then we would attempt to surgically remove the tumor.
This was the best case, we would do 4-6 rounds of chemotherapy and the metastatic disease would be gone and the tumor would have shrunk enough to allow for a complete resection. While you can't live without a liver, livers do grow back - you can remove most of a liver and it will grow back in a couple of months.
I think one of my first questions was about a transplant, "Can I give him part of my liver? You can transplant part of a liver right? I can give him part of my liver?" I would have done it in a heart beat for my son. I think his answer was something like, "let's not get too far ahead of ourselves".
"What are his chances?, What are his odds?" we wanted to know.
"A Stage 4 Hepatoblastoma diagnosis has around a 20% survival rate".
There was a glimmer of hope, that was all I needed, the faintest, palest glimmer.
I can't recall what else Dr. Stoffman told us that first meeting. But I do remember leaving the little room and going back to Harry's room feeling like I had been hit by a truck, but also relieved. After two terrifying days, we at least knew what we were facing.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Harry’s Journey
Later that evening we were transferred up to a room on CK5, the hermetically-sealed oncology ward at Children’s Hospital. One of the first things I noticed was the smell. The ward has a very particular smell. I came to identify that smell with the smell of chemotherapy chemicals, slowly dripping down IV tubes, into central lines, embedded into tiny chests.
That night, alone on CK5, sleeping on the pullout chair beside Harry’s crib. That night I prayed as I have never prayed before.
In the dark, with only the blue light from the display of the IV monitor illuminating the room. I held Harry in my arms and I prayed. I wept and I prayed.
“God, I don’t know how to do this. Help me God. I don’t know how to do this. Please God, you have to help me do this”.
Unfocused at first, but then the prayer settled into a sort of mantra.
“Oh God, oh Jesus. Please carry me. Please hold me. I can carry my son. I know I can carry my son through this, but I need help. I need someone to carry me so I can carry my son.”
In my mind I saw the footsteps in the sand along the beach. From the famous poem, where the one set of footsteps represents the times when Jesus carried the petitioner. I saw us three walking along the beach. Me carrying Harry and Jesus carrying me.
“Please hold me Jesus. Please carry me, as you have carried so many others. Please carry me so that I can carry my son. Please help hold me up, please give me strength, so I have the strength to carry my son.”
And then.
“God, I don’t know how to do this. Show me the way God. Please show me the way. I will carry my son. I will hold my son. I can do that. I can hold him through this. But please hold me and guide my steps. Please show me the way.”
I stood holding Harry for at least an hour. Praying that same prayer over and over and over. The words spilling out of my mouth, rocking rhythmically back and forth with Harry pulled close to my chest. My eyes clenched shut, tears streaming down my face.
“Please hold me God. Please carry me God. Please hold me so I can hold up my son. Show me the way God. Please show me how to do this. I don’t know how to do this. Please show me the way.”
Eventually Harry fell deeply asleep, and I exhausted, put him gently in his crib, collapsed into the pull out chair-bed, and fell into a fitful and restless sleep.
That night I had a dream.
I saw a map on the wall. It was like an old-fashioned treasure map that you see in a children’s adventure movie. Aged and worn brown paper, the edges all black and burnt.
The top of the map was entitled, “Hendrik’s Journey”.
On the left side of the map was an ‘X’, a marking of “You are here”. On the far right side of the map was our destination, marked with the words, “Harry is healed”. Vast, open, empty brown space stretched in between, in between our start and our destination. We were four little figures on the map. In the dream we started walking, little figures moving along the brown parchment, as we walked obstacles appeared before us. Obstacles for us to tackle. We were followed by our path, marked out behind us by a dotted black trail.
I was being shown how to walk the journey, from here to the place where ‘Harry is healed’. One day at a time. We would face each obstacle as it came, we would deal with each one in turn, but we would never lose sight of where we were going. No matter what mountain or stream appeared in our path. We would keep our sights trained on our destination, “Harry is healed”. Step-by-step we were going to get there. There was no other alternative destination. No other place to go. The path would be revealed as we journeyed, but the destination was ever-clear. We were going to the place where “Harry is Healed”.
I woke up in the morning and remembered the dream. I knew in an instant. This is how you’ll do it. This is how you will walk Harry’s journey. I knew exactly how to do this. I had just done this. Suddenly, it felt like, this is the whole reason why I did my doctoral thesis. So I would know how to do this. So I would know how to walk this journey with my son.
When Harry was born I knew that I had to finish my doctoral thesis by December 31, 2007. I had to have my thesis defense before Christmas and have the final draft of the thesis submitted for binding to the university before the final cut-off date in late December. I had no idea how I was going to do it. I simply set in my mind that I was going to defend in December. I would not think about how much I had to do, about how I was going to get it done. I simply set the destination and refused to let any other thought enter my head than that I would defend my thesis in December.
And then I focused, day-by-day. Each day, I worked a little bit. I never let myself think too far ahead, I focused on the day. If I thought too much about how much work I had to do with a newborn and a three-and-a-half year old to manage I would become paralyzed with fear. So I didn’t think about it. I put my head down, literally and figuratively, and worked four or six hours each day, during naps, once the kids were in bed. Slowly, I chipped away at it. When anyone asked, especially when a committee member asked, I insisted, I was going to defend in December, if not earlier. And I did it. I defended on Tuesday December 18th and submitted my thesis for binding a whole day early, on Thursday December 20th.
That honestly felt like the whole reason why I had toiled for eight years to finish my doctoral thesis. I felt like, if I never, ever, use the damn thing, it will have been worth it just to learn this lesson. That one lesson about how to accomplish the impossible. Set the goal, never let it out of your sight, and then just walk one day at a time to get there.
I remember telling Henry later that day that I now knew how we would do this. We would call it ‘Hendrik’s Journey” just like in my dream and we would walk it together, one day at a time.
And so that is how ‘Hendrik’s Journey’ officially began.
Friday, February 5, 2010
Our House on French CBC
Here is a link to a video clip that French CBC / Radio Canada did at our house last friday (January 29th) - they were looking for french speaking renovators (which our renovation company "Make it Home" happens to be) to talk about people finishing up renovations for the government HRTC (Home Renovation Tax Credit) which expired February 1, 2010.
So you can get a sense of what the house is starting to look like ... it starts with Mitch putting up a cabinet in our bathroom and then shows a lot of our main floor.
http://www.radio-canada.ca/regions/Manitoba/emissions/emission_tele.asp?pk=87
(Sorry you have to cut and paste this link - for some reason Blogger won't show the link when I try to insert it as an actual hyperlink in the text ... AND you might have to use the calendar on the left of the page to go to Jan 29th - we are at 6:01 in the broadcast ... hope it works!).
Peace,
Cynthia
p.s. I look terrible - I was at the house cleaning so we could move in the next day and they had told us it was just Radio Canada - so I didn't worry about even brushing my hair ... then they show up with a TV camera and decide to do the piece also for French CBC TV!
So you can get a sense of what the house is starting to look like ... it starts with Mitch putting up a cabinet in our bathroom and then shows a lot of our main floor.
http://www.radio-canada.ca/regions/Manitoba/emissions/emission_tele.asp?pk=87
(Sorry you have to cut and paste this link - for some reason Blogger won't show the link when I try to insert it as an actual hyperlink in the text ... AND you might have to use the calendar on the left of the page to go to Jan 29th - we are at 6:01 in the broadcast ... hope it works!).
Peace,
Cynthia
p.s. I look terrible - I was at the house cleaning so we could move in the next day and they had told us it was just Radio Canada - so I didn't worry about even brushing my hair ... then they show up with a TV camera and decide to do the piece also for French CBC TV!
Wednesday, February 3, 2010
18 Months
It is officially now 18 months since Harry passed over.
Today I feel ... acceptance.
There is still a jagged scar, which I will have for life, where the huge, gaping hole that ripped open in my heart when Harry passed away is healing over.
Yes, my heart is mending - but it will never be the same.
Yes, I am learning how to live without my wee Prince Harry, our Huggypet, our Hares-y-Bares-y.
Yes, today I am experiencing happiness, joy over being back in our home, anticipation over Sebastien's upcoming birth, loving having Lydia home for lunch and our play time together after school (we played Barbies ...).
But every day there is also a thread of sadness. Still missing Harry every day.
Mummy loves you my sweet Prince.
Love,
Cynthia
Today I feel ... acceptance.
There is still a jagged scar, which I will have for life, where the huge, gaping hole that ripped open in my heart when Harry passed away is healing over.
Yes, my heart is mending - but it will never be the same.
Yes, I am learning how to live without my wee Prince Harry, our Huggypet, our Hares-y-Bares-y.
Yes, today I am experiencing happiness, joy over being back in our home, anticipation over Sebastien's upcoming birth, loving having Lydia home for lunch and our play time together after school (we played Barbies ...).
But every day there is also a thread of sadness. Still missing Harry every day.
Mummy loves you my sweet Prince.
Love,
Cynthia
Tuesday, February 2, 2010
On the Breathe
This is a poem I wrote in November about Harry.
On the Breathe
On the breathe he came in
- in a rush of water.
On the breathe he left
- in a rush of water.
In between he breathed in pure love,
harmony, happiness, and joy.
Can you feel the
wind of his breathe on
your cheek?
xxxxxxxxx
Love,
Cynthia
Copyright 2010 Cynthia Neudoerffer
On the Breathe
On the breathe he came in
- in a rush of water.
On the breathe he left
- in a rush of water.
In between he breathed in pure love,
harmony, happiness, and joy.
Can you feel the
wind of his breathe on
your cheek?
xxxxxxxxx
Love,
Cynthia
Copyright 2010 Cynthia Neudoerffer
Monday, February 1, 2010
Home Sweet Home
We are HOME!
We slept in our house for the first time in nearly 5 months last night. It has been a long haul, but we are HOME. I am sitting in a comfy chair in the 'sun room' area of the kitchen aka 'the love room' according to Lydia and typing away in my laptop - wirelessly connected to the internet. Ah, life is good.
The renovation is still not finished - they still have a couple of weeks of work. The front porch and the exterior won't be finished until spring, we don't have kitchen counter tops, a kitchen sink, a bathroom sink, the tiling still needs to be finished in the bathroom (requires the bathroom sink), as does the tiling to put in our washer and dryer ... our microwave oven isn't in yet BUT enough is done that we could move back home! We have 2 working toilets and one sink and the bathtub does work and our bedrooms are pretty much done (just need closet doors in Lydia and Sebastien's rooms).
But we are home, I can FINALLY begin nesting and stop spending 3 hours of my day commuting! Lydia can walk to school, come home for lunch and play with her friends! We actually had time to finish home reading and do some music practice this morning before school!
What a big day for Lydia today. She proudly set off (on time!!) BY HERSELF for the first time to walk to school (granted she only has to walk across the street and their are patrols at the corner, but hey, it is a big deal to a six year old).
I gave her a big hug and kiss on her way out the door and she reminded me, "Don't come and get me for lunch, I'll come home all by myself". She walked so proudly across the street by herself, only looking back home once she was walking up the front steps of the school.
It feels sooooooo good to be home. As Lydia reported on our way downstairs last night, "the stairs still creak in all the same places, but everything is just so much nicer!". It is kind of surreal - it definitely is our house, but parts are so different. I adore my kitchen / love room. Somehow our house feels twice as big, even though the square footage hasn't changed at all. Amazing what improving the flow in a house can do.
Well, Lydia will be home for lunch in 30 minutes, I'm off to vacuum the attic floor ...
Love,
Cynthia
We slept in our house for the first time in nearly 5 months last night. It has been a long haul, but we are HOME. I am sitting in a comfy chair in the 'sun room' area of the kitchen aka 'the love room' according to Lydia and typing away in my laptop - wirelessly connected to the internet. Ah, life is good.
The renovation is still not finished - they still have a couple of weeks of work. The front porch and the exterior won't be finished until spring, we don't have kitchen counter tops, a kitchen sink, a bathroom sink, the tiling still needs to be finished in the bathroom (requires the bathroom sink), as does the tiling to put in our washer and dryer ... our microwave oven isn't in yet BUT enough is done that we could move back home! We have 2 working toilets and one sink and the bathtub does work and our bedrooms are pretty much done (just need closet doors in Lydia and Sebastien's rooms).
But we are home, I can FINALLY begin nesting and stop spending 3 hours of my day commuting! Lydia can walk to school, come home for lunch and play with her friends! We actually had time to finish home reading and do some music practice this morning before school!
What a big day for Lydia today. She proudly set off (on time!!) BY HERSELF for the first time to walk to school (granted she only has to walk across the street and their are patrols at the corner, but hey, it is a big deal to a six year old).
I gave her a big hug and kiss on her way out the door and she reminded me, "Don't come and get me for lunch, I'll come home all by myself". She walked so proudly across the street by herself, only looking back home once she was walking up the front steps of the school.
It feels sooooooo good to be home. As Lydia reported on our way downstairs last night, "the stairs still creak in all the same places, but everything is just so much nicer!". It is kind of surreal - it definitely is our house, but parts are so different. I adore my kitchen / love room. Somehow our house feels twice as big, even though the square footage hasn't changed at all. Amazing what improving the flow in a house can do.
Well, Lydia will be home for lunch in 30 minutes, I'm off to vacuum the attic floor ...
Love,
Cynthia
Thursday, January 28, 2010
Nicknames
When I was pregnant with both Lydia and Harry we didn't know either of their sex, so each of them had a "womb name" that we called them before they were born. Lydia's was "Little Foot" - because she was so active, we'd always see these feet sticking out and we'd say, "Oh there's a little foot", which morphed into "Little Foot" as her womb name. I remember when I first held her right after she was born, I said over and over, "Hello Little Foot!" and then we thought to check her sex and suddenly she was, "Lydia".
Lydia came up with Harry's womb name. One day at breakfast she just decided he needed a womb name and she declared it should be "Huggypet", which we loved and it stuck and became one of our favourite nicknames for Harry (along with Hares-y-bares-y-boinga-boy).
This time around, we told Lydia on a friday that I was pregnant and found out on the following Monday that he was a boy. Lydia suggested a womb name, "cutie pie" but it has not stuck. It is interesting to me, knowing that Sebastien is a boy and so clearly knowing that this is his name, we don't call him by his womb name at all - he is Sebastien to us.
Much more so than with Lydia or Harry, Sebastien seems so real and a part of our family already. Maybe because this is our third child and we know so much more what to expect? We feel so clearly that we already know and love him. Maybe it is just because of the age that Lydia is at, and the fact that she talks about her brothers - both Harry and Sebastien - every day - but he feels more real to me than the other two did in utero.
True to form, Lydia has already come up with several nicknames for Sebastien - all three of which I think will stick after he is born - "Basji", "Sebasji" and the more playful "Basji-Boogles".
On the pregnancy side, I continue to feel great - I wish everyone could have such a wonderful pregnancy! And Basji is very good. He is very much like Harry in the womb - gently active. When I am busy he sleeps and he is most active first thing in the morning and between 10-11 pm at night. I hope this doesn't mean that he is going to be a great sleeper only as long as someone is holding him and walking around! Every now and then I am overwhelmed with fear that he will get sick just like Harry and we will have to do the whole thing all over again - but I try to pretty quickly quell that fear as understandable but purely irrational.
Lydia said an interesting thing this morning when she and I were cuddling in bed before getting up. She declared that "Basji is going to be the best little brother ever". Then she quickly corrected herself, "Well, Harry is a best little brother too, but Basji is going to stay with us in his little overcoat a lot longer than Harry did, so I will get to do more with him".
That is one way we have talked about Harry that really has stuck with Lydia - that our bodies are really just like little overcoats that our souls, our true selves, wear. That each of us are "souls in little overcoats" and that when we die we take off our overcoat, but our true self, that which makes us 'us' never dies and goes back to heaven. Lydia will often talk about Harry in terms of, "remember when Harry was with us in his little overcoat" ...
Lydia makes me so aware of how trusting kids are of their parents when they are young. She was unable to get very excited about Sebastien until one day her friend Svava bluntly asked, "Is Sebastien going to die like Harry did?" and Lydia quickly piped in, "Yes, is he?" I could feel that she was having that fear but didn't know how to express it to me and that she was relieved when Svava finally said out loud what she could not bring herself to voice - it just took Svava to blurt it out for her and for me to assure her that no he would not, to help her overcome that fear and start to get excited about Sebastien.
Though I of course will always have my fears, which I think is only natural, though I try to keep them well at bay. It is amazing to see the trust of little children. Ever since I said, "No that is not going to happen to Sebastien", Lydia has simply accepted that as true, since her Mommy said it, and now she trusts that and dreams and talks about the future with Sebastien. I feel such an overwhelming responsibility to her to make that true, and also saddened that gradually she will have to learn that Mummies and Daddies do not know everything and can't tell you exactly what is going to happen. Although, I do feel that Sebastien is not coming for the same experience as Harry and his life will be uniquely his own. In any case, it is lovely to watch the innocence of a child completely trusting what their parents tell them - and to know that Lydia feels so secure in her life that she can trust us in that complete way.
So every day we talk about life with her two brothers, Harry, no longer in his little overcoat, but still very much a part of our family and Sebastien whose arrival in ~ 2 months time we anticipate with such joy and excitement.
It is so good to have so much joy and excitement to carry us forward through February and March this year. I remember sitting and writing pretty much exactly a year ago about my fears of entering into February 2009. It is incredible the difference a year can make.
I remember in the early weeks after Harry had passed over, wishing so much I had a fast-foward button I could press. I knew the first year without him with us "in his little overcoat" was going to be so very hard and I wanted to just get to the one year mark, because I had an intuitive sense that somehow things would get easier after that. Of course, you can't fast forward grief. The only way to deal with it is to do the hard work of walking through it. Walking around it doesn't make it go away - just actually makes the obstacle bigger and more difficult to deal with.
But we have managed to walk through "our forest of grief" and we do seem to be through the worst to a place, a clearing, where the light can shine through brightly. The trees have thinned and the canopy is mostly open and we can breathe in the air and sunshine and feel joy and happiness again. That said, for those that wonder, I would never say that I am "over" my grief over Harry's illness and passing. That I have somehow "gotten over it".
I have said before and I maintain, this is not something one "gets over" and I would like people to know this and remember this if they either ever find themselves in this place or have a friend or family member in this place. I will never be "over" losing Harry. I have learned to live with his absence. Learned to live with the fact that we can't see him in his little overcoat again. Learned to live with the fact that I can't hold him and watch him grow. Learned to live with the ache and the grief and the loss. But it doesn't mean that any of it has gone away. I've just managed to integrate it into who I am now and I know how to be me and live with this within me.
I am forever changed and different from the experience of being Harry's mum, for the better I hope and believe! And I look forward to being Sebastien's mum and how that will change me - I hope more for the better yet again. It is the one thing I know for certain in life - that change is the only constant - and the sooner we come to know that and live with that expectation the easier life seems every day!
Love,
Cynthia
Lydia came up with Harry's womb name. One day at breakfast she just decided he needed a womb name and she declared it should be "Huggypet", which we loved and it stuck and became one of our favourite nicknames for Harry (along with Hares-y-bares-y-boinga-boy).
This time around, we told Lydia on a friday that I was pregnant and found out on the following Monday that he was a boy. Lydia suggested a womb name, "cutie pie" but it has not stuck. It is interesting to me, knowing that Sebastien is a boy and so clearly knowing that this is his name, we don't call him by his womb name at all - he is Sebastien to us.
Much more so than with Lydia or Harry, Sebastien seems so real and a part of our family already. Maybe because this is our third child and we know so much more what to expect? We feel so clearly that we already know and love him. Maybe it is just because of the age that Lydia is at, and the fact that she talks about her brothers - both Harry and Sebastien - every day - but he feels more real to me than the other two did in utero.
True to form, Lydia has already come up with several nicknames for Sebastien - all three of which I think will stick after he is born - "Basji", "Sebasji" and the more playful "Basji-Boogles".
On the pregnancy side, I continue to feel great - I wish everyone could have such a wonderful pregnancy! And Basji is very good. He is very much like Harry in the womb - gently active. When I am busy he sleeps and he is most active first thing in the morning and between 10-11 pm at night. I hope this doesn't mean that he is going to be a great sleeper only as long as someone is holding him and walking around! Every now and then I am overwhelmed with fear that he will get sick just like Harry and we will have to do the whole thing all over again - but I try to pretty quickly quell that fear as understandable but purely irrational.
Lydia said an interesting thing this morning when she and I were cuddling in bed before getting up. She declared that "Basji is going to be the best little brother ever". Then she quickly corrected herself, "Well, Harry is a best little brother too, but Basji is going to stay with us in his little overcoat a lot longer than Harry did, so I will get to do more with him".
That is one way we have talked about Harry that really has stuck with Lydia - that our bodies are really just like little overcoats that our souls, our true selves, wear. That each of us are "souls in little overcoats" and that when we die we take off our overcoat, but our true self, that which makes us 'us' never dies and goes back to heaven. Lydia will often talk about Harry in terms of, "remember when Harry was with us in his little overcoat" ...
Lydia makes me so aware of how trusting kids are of their parents when they are young. She was unable to get very excited about Sebastien until one day her friend Svava bluntly asked, "Is Sebastien going to die like Harry did?" and Lydia quickly piped in, "Yes, is he?" I could feel that she was having that fear but didn't know how to express it to me and that she was relieved when Svava finally said out loud what she could not bring herself to voice - it just took Svava to blurt it out for her and for me to assure her that no he would not, to help her overcome that fear and start to get excited about Sebastien.
Though I of course will always have my fears, which I think is only natural, though I try to keep them well at bay. It is amazing to see the trust of little children. Ever since I said, "No that is not going to happen to Sebastien", Lydia has simply accepted that as true, since her Mommy said it, and now she trusts that and dreams and talks about the future with Sebastien. I feel such an overwhelming responsibility to her to make that true, and also saddened that gradually she will have to learn that Mummies and Daddies do not know everything and can't tell you exactly what is going to happen. Although, I do feel that Sebastien is not coming for the same experience as Harry and his life will be uniquely his own. In any case, it is lovely to watch the innocence of a child completely trusting what their parents tell them - and to know that Lydia feels so secure in her life that she can trust us in that complete way.
So every day we talk about life with her two brothers, Harry, no longer in his little overcoat, but still very much a part of our family and Sebastien whose arrival in ~ 2 months time we anticipate with such joy and excitement.
It is so good to have so much joy and excitement to carry us forward through February and March this year. I remember sitting and writing pretty much exactly a year ago about my fears of entering into February 2009. It is incredible the difference a year can make.
I remember in the early weeks after Harry had passed over, wishing so much I had a fast-foward button I could press. I knew the first year without him with us "in his little overcoat" was going to be so very hard and I wanted to just get to the one year mark, because I had an intuitive sense that somehow things would get easier after that. Of course, you can't fast forward grief. The only way to deal with it is to do the hard work of walking through it. Walking around it doesn't make it go away - just actually makes the obstacle bigger and more difficult to deal with.
But we have managed to walk through "our forest of grief" and we do seem to be through the worst to a place, a clearing, where the light can shine through brightly. The trees have thinned and the canopy is mostly open and we can breathe in the air and sunshine and feel joy and happiness again. That said, for those that wonder, I would never say that I am "over" my grief over Harry's illness and passing. That I have somehow "gotten over it".
I have said before and I maintain, this is not something one "gets over" and I would like people to know this and remember this if they either ever find themselves in this place or have a friend or family member in this place. I will never be "over" losing Harry. I have learned to live with his absence. Learned to live with the fact that we can't see him in his little overcoat again. Learned to live with the fact that I can't hold him and watch him grow. Learned to live with the ache and the grief and the loss. But it doesn't mean that any of it has gone away. I've just managed to integrate it into who I am now and I know how to be me and live with this within me.
I am forever changed and different from the experience of being Harry's mum, for the better I hope and believe! And I look forward to being Sebastien's mum and how that will change me - I hope more for the better yet again. It is the one thing I know for certain in life - that change is the only constant - and the sooner we come to know that and live with that expectation the easier life seems every day!
Love,
Cynthia
Thursday, January 14, 2010
To Chris Grabowski
This is a message to a Chris Grabowski --
I don't even know if you will be returning to this blog or not. But you had posted a comment a few days ago about the niece of a friend of yours, named Lydia, who has just been diagnosed with MRT of the kidney.
I am just wanting to pass on some information to you to pass on to Lydia's family. One of the best internet resources for MRT is the www.cbtrf.org. This is the web site for the Children's Brain Tumor Research Foundation. It is an organization founded Jeff and Katie Shaddix in honour and memory of their son Jonathan, who passed away from AT/RT (the brain tumor verson of rhabdoid cancer) in May of 2009. Jeff is trying to keep a database of all kids with AT/RT / MRT / extra-renal & non-CNS MRT (basically all other Rhabdoid cancers). The web site also hosts a number of discussion forums and is a really good place to go to find out about the latest research and treatment protocols for rhabdoid cancer.
The AT/RT / Rhabdoid community is a very supportive one - we have all been through the experience of our children receiveing this heart-wrenching diagnosis and dealt with the challenges of chemotherapy and, in some cases, radiation. I would strongly urge them to register on the site into the database. As Jeff is trying to gather a database all children with MRT / AT/RT in the world to be useful to research.
If Lydia's family has set up a caringbridge page or carepage or web page or blog - could you let me know - Jeff Shaddix at cbtrf.org would also like to know as he tries to keep track of all of our rhabdoid kids. I would like to follow her journey and know how she is doing so I can be specific in my prayers for her.
Peace,
Cynthia
I don't even know if you will be returning to this blog or not. But you had posted a comment a few days ago about the niece of a friend of yours, named Lydia, who has just been diagnosed with MRT of the kidney.
I am just wanting to pass on some information to you to pass on to Lydia's family. One of the best internet resources for MRT is the www.cbtrf.org. This is the web site for the Children's Brain Tumor Research Foundation. It is an organization founded Jeff and Katie Shaddix in honour and memory of their son Jonathan, who passed away from AT/RT (the brain tumor verson of rhabdoid cancer) in May of 2009. Jeff is trying to keep a database of all kids with AT/RT / MRT / extra-renal & non-CNS MRT (basically all other Rhabdoid cancers). The web site also hosts a number of discussion forums and is a really good place to go to find out about the latest research and treatment protocols for rhabdoid cancer.
The AT/RT / Rhabdoid community is a very supportive one - we have all been through the experience of our children receiveing this heart-wrenching diagnosis and dealt with the challenges of chemotherapy and, in some cases, radiation. I would strongly urge them to register on the site into the database. As Jeff is trying to gather a database all children with MRT / AT/RT in the world to be useful to research.
If Lydia's family has set up a caringbridge page or carepage or web page or blog - could you let me know - Jeff Shaddix at cbtrf.org would also like to know as he tries to keep track of all of our rhabdoid kids. I would like to follow her journey and know how she is doing so I can be specific in my prayers for her.
Peace,
Cynthia
Thursday, December 3, 2009
December 3, 2009 - 16 months
What is the measure of a life? By any measure can 16 months of life be construed to have been a long and frutiful life?
Sixteen months.
Harry lived for exactly 16 months.
As of today, he has been gone for exactly 16 months.
This feels like as significant an anniversary as the one-year mark of his passing.
From this day forward, every day is one more day longer than he lived with us. Now every day really takes us into what feels like uncharted waters. It really feels like we are being pushed or carried into that place where Harry never was, never will be.
I wish I could put into words how strange it is to have a young child die. How they can be here and then just not be here. How your life was one way one day and the very next it is completely different. How this little being was with us and an integral part of us and now that form of him is gone. I suppose it is not so different from when they are born, they are not here one day and the next they are. But one is marked by joy and the other by sorrow and all the world of difference that one little difference makes.
I close my eyes and I can remember the moments of his life. I cannot comprehend that that time, the time span of his life and the time I have lived since he passed over are the same. This time and that time, they are the same yet I cannot compare them. They have no meaning, no relation.
Most days I manage to move forward, focusing on optimism, and joy and hope for the future. But when I sit, sit and stop to think and feel. To remember what was and what never will be. It is so overwhelming, the grief is so overwhelming. That is how you manage to live with the grief. It is so overwhelming, you learn to only swim in it for a very small part of your day, and not even every day. Because you will drown otherwise. But the ocean is right there, and we live on the beach, and you can't avoid going in forever. But when you do, the riptide is fierce and it takes all of your strength, everything in you, to avoid its pull under.
It is so inadequate to say that I miss Harry. Missing cannot begin to describe the ache that I feel. The jagged crack in my heart where the love for him pours out. I am forever off balance. I am forever out of sorts. I have been knocked off my axis. Like Humpty-Dumpty, you cannot put me back together again.
Sixteen months.
Harry lived for exactly 16 months.
As of today, he has been gone for exactly 16 months.
This feels like as significant an anniversary as the one-year mark of his passing.
From this day forward, every day is one more day longer than he lived with us. Now every day really takes us into what feels like uncharted waters. It really feels like we are being pushed or carried into that place where Harry never was, never will be.
I wish I could put into words how strange it is to have a young child die. How they can be here and then just not be here. How your life was one way one day and the very next it is completely different. How this little being was with us and an integral part of us and now that form of him is gone. I suppose it is not so different from when they are born, they are not here one day and the next they are. But one is marked by joy and the other by sorrow and all the world of difference that one little difference makes.
I close my eyes and I can remember the moments of his life. I cannot comprehend that that time, the time span of his life and the time I have lived since he passed over are the same. This time and that time, they are the same yet I cannot compare them. They have no meaning, no relation.
Most days I manage to move forward, focusing on optimism, and joy and hope for the future. But when I sit, sit and stop to think and feel. To remember what was and what never will be. It is so overwhelming, the grief is so overwhelming. That is how you manage to live with the grief. It is so overwhelming, you learn to only swim in it for a very small part of your day, and not even every day. Because you will drown otherwise. But the ocean is right there, and we live on the beach, and you can't avoid going in forever. But when you do, the riptide is fierce and it takes all of your strength, everything in you, to avoid its pull under.
It is so inadequate to say that I miss Harry. Missing cannot begin to describe the ache that I feel. The jagged crack in my heart where the love for him pours out. I am forever off balance. I am forever out of sorts. I have been knocked off my axis. Like Humpty-Dumpty, you cannot put me back together again.
Tuesday, December 1, 2009
Children's Brain Tumor Research Foundation
Please take a minute and vote on Facebook for the CBTRF to receive $25K in research funds. This organization (CBTRF) was set up by a fellow Rhabdoid parent, Jeff Shaddix, in honour and memory of his beautiful son Jonathan, who joined Harry with the Angels in May 2009. Jonathan had AT/RT - which is the brain tumor version of Harry's Rhabdoid cancer and research into the AT/RT will also directly benefit all other Rhabdoid kids.
Thanks!
Cynthia
Here is the link to vote for CBTRF:
CLICK HERE TO VOTE FOR CBTRF to win a $25k Grant for Research!
Thanks!
Cynthia
Here is the link to vote for CBTRF:
CLICK HERE TO VOTE FOR CBTRF to win a $25k Grant for Research!
Monday, November 30, 2009
Se-bas-tien
Figured it out yet?
Sebastien ... Se - bas - tien ... our little "see bus ten" - the name we are sure Harry would choose for his little brother.
Love
Cynthia
Sebastien ... Se - bas - tien ... our little "see bus ten" - the name we are sure Harry would choose for his little brother.
Love
Cynthia
Friday, November 27, 2009
Hint on Origin of Sebastien's Name
Here is a hint to help figure out the origin of Sebastien's name.
One of Harry's most favourite things in the world was to wave at and visit the Number 10 bus - the city bus which passes our house roughly every 20 minutes to half an hour each day. It started when Harry and I would sit at the front window and watch for Daddy to come off the bus in the evening. Eventually, he could just sense the bus coming and before we could even see it he would be pointing to the front window to go and look. Sure enough, we'd go and there would be the bus turning onto our street off Evanson Street, two blocks east of us. He would bounce in my arms and wave at the bus. The bus loop where the bus turns around is also just two blocks away, in Aubrey Park - so when we were at the park, and a bus pulled into the bus turn around loop Harry would point to the bus and want to go and check it out. The bus drivers were always nice enough to let us come onto the bus and look around. Harry just loved that.
All of Harry's last summer we spent many afternoons sitting on our bench on our front porch and Harry would bounce and wave each time the bus came buy. It got so the drivers knew to look to our house and wave at the little boy sitting on his front stoop on the corner, or riding on the sidewalk on his trike (with his Mum dragging his IV pole / feeding pump and managing not to catch his feeding tube on anything). One of the ways we passed the long days in the hospital when Harry was going through chemotherapy was to sit and look out his window and wave at every bus that passed by. Even in his last few weeks, when he got sicker and sicker and weaker and weaker and was mostly just sleeping in my arms, I'd sit outside on the bench with Harry for hours and he would sleep, but when he heard the bus, even his last days, he would wake up and sit up and wave to the bus.
So, knowing how much he loved the bus, and specifically the number 10 bus, can you now guess at the meaning / relationship to Sebastien's name (and why we are spelling it sebastien not sebastian).
Love,
Cynthia
One of Harry's most favourite things in the world was to wave at and visit the Number 10 bus - the city bus which passes our house roughly every 20 minutes to half an hour each day. It started when Harry and I would sit at the front window and watch for Daddy to come off the bus in the evening. Eventually, he could just sense the bus coming and before we could even see it he would be pointing to the front window to go and look. Sure enough, we'd go and there would be the bus turning onto our street off Evanson Street, two blocks east of us. He would bounce in my arms and wave at the bus. The bus loop where the bus turns around is also just two blocks away, in Aubrey Park - so when we were at the park, and a bus pulled into the bus turn around loop Harry would point to the bus and want to go and check it out. The bus drivers were always nice enough to let us come onto the bus and look around. Harry just loved that.
All of Harry's last summer we spent many afternoons sitting on our bench on our front porch and Harry would bounce and wave each time the bus came buy. It got so the drivers knew to look to our house and wave at the little boy sitting on his front stoop on the corner, or riding on the sidewalk on his trike (with his Mum dragging his IV pole / feeding pump and managing not to catch his feeding tube on anything). One of the ways we passed the long days in the hospital when Harry was going through chemotherapy was to sit and look out his window and wave at every bus that passed by. Even in his last few weeks, when he got sicker and sicker and weaker and weaker and was mostly just sleeping in my arms, I'd sit outside on the bench with Harry for hours and he would sleep, but when he heard the bus, even his last days, he would wake up and sit up and wave to the bus.
So, knowing how much he loved the bus, and specifically the number 10 bus, can you now guess at the meaning / relationship to Sebastien's name (and why we are spelling it sebastien not sebastian).
Love,
Cynthia
Wednesday, November 25, 2009
Baby Sebastien Photos
Here is a link to a web album of some of our early ultrasound photos of Baby Sebastien. The first four were taken at 15 weeks and the last 2 at 20 weeks. I still have to scan some more of the 20 week pictures - but the hand and foot are two of the cutest. His profile at 15 weeks looks a lot like both Lydia and Harry's in the womb.
See if you can guess why we have chosen the name "Sebastien" for him - well *we* didn't choose it exactly - the hint is that this is the name we are sure Harry would choose for his little brother. Break it down and think about what Harry loved to do and it is obvious and cool!!!
Love,
Cynthia
See if you can guess why we have chosen the name "Sebastien" for him - well *we* didn't choose it exactly - the hint is that this is the name we are sure Harry would choose for his little brother. Break it down and think about what Harry loved to do and it is obvious and cool!!!
Love,
Cynthia
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| Baby Sebastien Photos |
Wednesday, November 11, 2009
Photos of our home renovation
The below link should go to a Picasa web album showing picture of our home renovation.
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| Home Renovation |
Tuesday, November 10, 2009
20-Week Ultrasound
I had my 20-week ultrasound yesterday.
Our wee boy is very active and looks very healthy! The technician was so kind and said he looks very good, no reasons for concern and no reason to come back again for another ultrasound, unless my midwife decides otherwise. But she was so kind, knowing our history with Harry, she gave me her card and told me to give her a call and just come in and see her if I am feeling worried at all about the baby, and she'll take another look.
My triple-screen blood test came back negative! So that was very good news and means that no further testing is required. His spine looks great so no fears of spina bifida, and his risk for downs sydrome is way down. So good news on all fronts.
He was very cooperative for the tech - always shifting into exactly the position she wanted him in to be able to take a particular measurement or capture a particular view - something Mummy likes to hear ... very cooperative!!! We got lots of great shots of his hands - as he kept on waving at us, as if to say, "Hello Mummy, Hello Papa, see you in March!". Just like Harry and Lydia she said he has a lovely shaped head!
I am hoping to set up my printer / scanner tomorrow and if I can figure it all out, I'll try to scan and post some of our pictures from the ultrasound. To me, his little profile looks just like Lydia and Harry's did in-utero - so I am sure he is going to be yet another blond-haired, blue-eyed carbon-copy of his Dad - just like Harry and Lydia - ah well, that will at least mean he will be a cutie!
Having this baby feels like a radical act of hope. We could have given into fear and not have had another child, but living in hope is part of our promise to Harry. We are also lucky - given that Harry's cancer was sporadic and not genetic, we don't have to worry about another child developing this cancer - which parents of a child with an inherited or de novo mutation do - so that makes it easier for us. It *is* scary to move into the future in hope, nonetheless. Having once received devastating medical news, we know that it can happen. That makes every medical procedure we have to do with a child, Lydia or this baby, that much more stressful.
When Lydia had to go to the doctor's last December for her 5-year old check up, I made Henry come with me. It was the first time I was going back to the doctor's office since we had taken Harry that fateful day, February 22, 2008. Lydia was scared, so I had to massively fight back *my* fear to put on a brave face for her. But *inside* I was fighing back nausea like you wouldn't believe. Thank goodness the nurse, by chance, did not put us in the same patient room that we had been in with Harry when Dr. Van Rooyen had found his tumour. When Lydia had to lie down on the table and he did his routine check of her arms, legs, and core, including abdomen - Henry and I held onto each other's hand for dear life. I think the doctor could tell how scared we were, he kept talking the whole time. "Oh, yes, this feels fine, um, yes good, everything feels normal and healthy". I honestly nearly passed out with fear when he was feeling around her liver - even though I prod her often now and know she is fine - it was just so terrifying to have her checked out that first time. Henry said after the visit was all done, "No wonder you wanted me there, that was incredibly difficult, I had no idea just how stressful it would be!"
I have already warned Dr. Van Rooyen that I will be bringing this baby in every month for a well-baby check up for his first year at least, not on the usual 2-4-6 & 12 month schedule. Fortunately, he completely understands! Part of me will always wonder, "what if we had brought Harry in for a 9-month check up? Would we have found the cancer sooner? Would it have made a difference?" I try to be positive - "No, it wouldn't have made a difference. He just would have been a sick baby sooner". But sometimes despite my best efforts, that nagging voice pushes her way in, "Maybe if you hadn't been so focused on finishing your PhD in the fall of 2007 you would have noticed your son was starting to get sick." I really dislike that nagging voice and *really* try not to listen to her!
It also feels like a radical act of hope to talk about this baby's future with Lydia - which we do now daily. I will not let my life be shrouded in fear - but it is a conscious effort to stay positive and focused on the good each day. I try not to get too far ahead of myself and just focus on how wonderful today is - not to put off thoroughly enjoying the now and not to focus on too much on that which is unknown and unknowable. One of Harry's gifts was learning how to radically focus on the good and the gifts of the NOW - I will not squander these hard learned lessons!
On that note, have a wonderful day. If you are in western Canada - where we're experiencing an above normal temperature week - bask in the glory of the gift of the sunshine and warmth today! I know I will!
Peace and blessings,
Cynthia
Our wee boy is very active and looks very healthy! The technician was so kind and said he looks very good, no reasons for concern and no reason to come back again for another ultrasound, unless my midwife decides otherwise. But she was so kind, knowing our history with Harry, she gave me her card and told me to give her a call and just come in and see her if I am feeling worried at all about the baby, and she'll take another look.
My triple-screen blood test came back negative! So that was very good news and means that no further testing is required. His spine looks great so no fears of spina bifida, and his risk for downs sydrome is way down. So good news on all fronts.
He was very cooperative for the tech - always shifting into exactly the position she wanted him in to be able to take a particular measurement or capture a particular view - something Mummy likes to hear ... very cooperative!!! We got lots of great shots of his hands - as he kept on waving at us, as if to say, "Hello Mummy, Hello Papa, see you in March!". Just like Harry and Lydia she said he has a lovely shaped head!
I am hoping to set up my printer / scanner tomorrow and if I can figure it all out, I'll try to scan and post some of our pictures from the ultrasound. To me, his little profile looks just like Lydia and Harry's did in-utero - so I am sure he is going to be yet another blond-haired, blue-eyed carbon-copy of his Dad - just like Harry and Lydia - ah well, that will at least mean he will be a cutie!
Having this baby feels like a radical act of hope. We could have given into fear and not have had another child, but living in hope is part of our promise to Harry. We are also lucky - given that Harry's cancer was sporadic and not genetic, we don't have to worry about another child developing this cancer - which parents of a child with an inherited or de novo mutation do - so that makes it easier for us. It *is* scary to move into the future in hope, nonetheless. Having once received devastating medical news, we know that it can happen. That makes every medical procedure we have to do with a child, Lydia or this baby, that much more stressful.
When Lydia had to go to the doctor's last December for her 5-year old check up, I made Henry come with me. It was the first time I was going back to the doctor's office since we had taken Harry that fateful day, February 22, 2008. Lydia was scared, so I had to massively fight back *my* fear to put on a brave face for her. But *inside* I was fighing back nausea like you wouldn't believe. Thank goodness the nurse, by chance, did not put us in the same patient room that we had been in with Harry when Dr. Van Rooyen had found his tumour. When Lydia had to lie down on the table and he did his routine check of her arms, legs, and core, including abdomen - Henry and I held onto each other's hand for dear life. I think the doctor could tell how scared we were, he kept talking the whole time. "Oh, yes, this feels fine, um, yes good, everything feels normal and healthy". I honestly nearly passed out with fear when he was feeling around her liver - even though I prod her often now and know she is fine - it was just so terrifying to have her checked out that first time. Henry said after the visit was all done, "No wonder you wanted me there, that was incredibly difficult, I had no idea just how stressful it would be!"
I have already warned Dr. Van Rooyen that I will be bringing this baby in every month for a well-baby check up for his first year at least, not on the usual 2-4-6 & 12 month schedule. Fortunately, he completely understands! Part of me will always wonder, "what if we had brought Harry in for a 9-month check up? Would we have found the cancer sooner? Would it have made a difference?" I try to be positive - "No, it wouldn't have made a difference. He just would have been a sick baby sooner". But sometimes despite my best efforts, that nagging voice pushes her way in, "Maybe if you hadn't been so focused on finishing your PhD in the fall of 2007 you would have noticed your son was starting to get sick." I really dislike that nagging voice and *really* try not to listen to her!
It also feels like a radical act of hope to talk about this baby's future with Lydia - which we do now daily. I will not let my life be shrouded in fear - but it is a conscious effort to stay positive and focused on the good each day. I try not to get too far ahead of myself and just focus on how wonderful today is - not to put off thoroughly enjoying the now and not to focus on too much on that which is unknown and unknowable. One of Harry's gifts was learning how to radically focus on the good and the gifts of the NOW - I will not squander these hard learned lessons!
On that note, have a wonderful day. If you are in western Canada - where we're experiencing an above normal temperature week - bask in the glory of the gift of the sunshine and warmth today! I know I will!
Peace and blessings,
Cynthia
Tuesday, November 3, 2009
One year three months
It has been one year and three months today since Harry died.
Life with Harry seems like a dream. I look at his pictures on my office wall and I wonder to myself, "Is that really me? Was that my life? Did that really happen?" In many ways it feels like a lifetime ago. In one more month it will be a lifetime ago, Harry's lifetime ago. That seems so impossible to me, that in one months time he will have been gone for as long as he was here.
It is so strange. I will never forget him. He is still so much of a daily presence in our lives, and yet, his life seems like a dream that happened long ago.
A family friend asked me recently if being pregnant helped to ease the pain over the loss of Harry. Yes and no. It is wonderful to have something so hopeful to look forward to. I adore being pregnant. If I had known how much I was going to love it, I would have started much younger and have planned on at least 6 kids! I love watching my belly grow and feeling the baby's gentle kicks and flutters. I am now 20 weeks and half way through. I feel wonderful - just so content and happy to be growing this blessed child in my womb.
We love him so much already.
So, yes, in a way having something so exciting to look forward to helps me stay grounded in a place of joy and hope. Yet, no, too. Nothing can take the pain of losing Harry away. His absence will always be such an ovewhelming presence in our lives, I can't imagine anything easing the pain of his loss.
It *is* nice to have the baby to look forward to. I hear a baby cry in church and I cannot wait to comfort my crying son. To hold him and nurse him and take care of him. I feel so overwhelmingly blessed to be given the chance to welcome another child into our lives.
Lydia has overcome her initial anger at having another brother, "I don't need another brother she insisted, I already have one. I want a sister!" But, fortunately, the thrill of having another sibling has overtaken her initial reluctance and she already tells the baby daily how much she loves him. She is looking forward to being able to read him stories, playing with him, and helping me take care of him. She wants to share a room with him, too. Something she always wanted to do with Harry. We have started talking about what the baby will be like and do at different ages and what Lydia will do with him then. Lydia already anticipates that when he is five, he will chase her down the street when she goes to a friend's house, wanting to come too. And she tells me, "It's okay Mommy, I'll bring him with me to Eva's house, he'll be able to play there with us." She hopes that she can be his reading buddy, when he is in nursery and kindergarten and she is in grades 5 and 6.
I think once she was able to express her fears to me, "Will this brother die like Harry?" And I was able to reassure her as best as I could, "No, I don't think so sweetie. Harry's life was his own and this baby is coming for his own life and I think he is coming to be with us for a long time. Harry's cancer was so unique, it is just not something that will happen again," that she has been able to become excited about the baby.
I, of course, wish I could outright tell her with certainty, "No this baby won't die". I believe he is completely healthy and coming for a very different experience from Harry, but my crystal ball is as blurry as the next. And I can't bring myself to lie to Lydia. And I'd of course be lying to myself, if I said the fear hasn't crossed my mind, too. But I won't tell *that* to Lydia. And I cancel that fear and send it packing as soon as it emerges. I won't even entertain that thought.
I rub my belly and smile, and yet in the next instance look up and see Harry's smiling face shining down on me from my wall and a tear rolls down my cheek. How is it that we can hold two such opposed feelings in our hearts at once? But I guess that isn't true. It is one emotion, one and the same. It is love. I look at Harry and I feel such overwhelming love for him and it makes me cry. I rub my belly and I feel such overwhelming love for my baby and it makes me smile. I'm glad I can feel such overwhelming love for both of my boys. That the love for one in no way diminishes or changes the love for the other. They are unique and wonderful and good.
I like to imagine Harry and his little brother, talking in heaven. Or well, as Lydia describes it, the baby is in "waiting to be born Heaven, where she and Harry were before they were born and where they looked down at the party of possible parents from a balcony and choose Daddy and I" and that Harry visits him there. And Harry tells him all of the wonderful things to expect in our family. How much love there is waiting for him here. I always ask the baby to make sure he gets to know his brother well in heaven, since he won't get to know him here.
I wonder what I will tell the baby about Harry. He'll see his pictures and I am sure wonder and ask. But he'll know about Harry from the time he is born, because Lydia talks about Harry every day.
Harry and his brother and sister. Three kids. I never thought I'd have three kids, certainly not two boys. I always thought I'd have girls. Maybe it sounds weird that we aleady think of ourselves as a family of five (not four). I can't unmake Harry. He's not here, exactly, but he most certainly isn't 'gone' either. Oh, but I do wish I could talk to him. Hear him talk. Oh and what I would give to hold him again.
It scares me that life moves on and that we move on and keep going, because we have no choice but to do othersise. While Harry, Harry will always be that little boy who was with us for just 16 months and died of this ridiculously rare cancer. That is what I worry about now, the distance, the ever growing distance between Harry and where life is now and making sure I always have a way to cross that chasm to never lose touch or hold on Harry. On who he was and how wonderful those 16 months were with him.
On an entirely different note, our home renovations are coming along slowly but surely. The siding started going on yesterday and it promises to be a good week weather wise, so hopefully they'll get most of the exterior done now. We can't wait to move back home. As wonderful as it is to have a great place to stay. This experience is making us appreciate our home more than ever! I *really* will post pictures soon!
Love,
Cynthia
Life with Harry seems like a dream. I look at his pictures on my office wall and I wonder to myself, "Is that really me? Was that my life? Did that really happen?" In many ways it feels like a lifetime ago. In one more month it will be a lifetime ago, Harry's lifetime ago. That seems so impossible to me, that in one months time he will have been gone for as long as he was here.
It is so strange. I will never forget him. He is still so much of a daily presence in our lives, and yet, his life seems like a dream that happened long ago.
A family friend asked me recently if being pregnant helped to ease the pain over the loss of Harry. Yes and no. It is wonderful to have something so hopeful to look forward to. I adore being pregnant. If I had known how much I was going to love it, I would have started much younger and have planned on at least 6 kids! I love watching my belly grow and feeling the baby's gentle kicks and flutters. I am now 20 weeks and half way through. I feel wonderful - just so content and happy to be growing this blessed child in my womb.
We love him so much already.
So, yes, in a way having something so exciting to look forward to helps me stay grounded in a place of joy and hope. Yet, no, too. Nothing can take the pain of losing Harry away. His absence will always be such an ovewhelming presence in our lives, I can't imagine anything easing the pain of his loss.
It *is* nice to have the baby to look forward to. I hear a baby cry in church and I cannot wait to comfort my crying son. To hold him and nurse him and take care of him. I feel so overwhelmingly blessed to be given the chance to welcome another child into our lives.
Lydia has overcome her initial anger at having another brother, "I don't need another brother she insisted, I already have one. I want a sister!" But, fortunately, the thrill of having another sibling has overtaken her initial reluctance and she already tells the baby daily how much she loves him. She is looking forward to being able to read him stories, playing with him, and helping me take care of him. She wants to share a room with him, too. Something she always wanted to do with Harry. We have started talking about what the baby will be like and do at different ages and what Lydia will do with him then. Lydia already anticipates that when he is five, he will chase her down the street when she goes to a friend's house, wanting to come too. And she tells me, "It's okay Mommy, I'll bring him with me to Eva's house, he'll be able to play there with us." She hopes that she can be his reading buddy, when he is in nursery and kindergarten and she is in grades 5 and 6.
I think once she was able to express her fears to me, "Will this brother die like Harry?" And I was able to reassure her as best as I could, "No, I don't think so sweetie. Harry's life was his own and this baby is coming for his own life and I think he is coming to be with us for a long time. Harry's cancer was so unique, it is just not something that will happen again," that she has been able to become excited about the baby.
I, of course, wish I could outright tell her with certainty, "No this baby won't die". I believe he is completely healthy and coming for a very different experience from Harry, but my crystal ball is as blurry as the next. And I can't bring myself to lie to Lydia. And I'd of course be lying to myself, if I said the fear hasn't crossed my mind, too. But I won't tell *that* to Lydia. And I cancel that fear and send it packing as soon as it emerges. I won't even entertain that thought.
I rub my belly and smile, and yet in the next instance look up and see Harry's smiling face shining down on me from my wall and a tear rolls down my cheek. How is it that we can hold two such opposed feelings in our hearts at once? But I guess that isn't true. It is one emotion, one and the same. It is love. I look at Harry and I feel such overwhelming love for him and it makes me cry. I rub my belly and I feel such overwhelming love for my baby and it makes me smile. I'm glad I can feel such overwhelming love for both of my boys. That the love for one in no way diminishes or changes the love for the other. They are unique and wonderful and good.
I like to imagine Harry and his little brother, talking in heaven. Or well, as Lydia describes it, the baby is in "waiting to be born Heaven, where she and Harry were before they were born and where they looked down at the party of possible parents from a balcony and choose Daddy and I" and that Harry visits him there. And Harry tells him all of the wonderful things to expect in our family. How much love there is waiting for him here. I always ask the baby to make sure he gets to know his brother well in heaven, since he won't get to know him here.
I wonder what I will tell the baby about Harry. He'll see his pictures and I am sure wonder and ask. But he'll know about Harry from the time he is born, because Lydia talks about Harry every day.
Harry and his brother and sister. Three kids. I never thought I'd have three kids, certainly not two boys. I always thought I'd have girls. Maybe it sounds weird that we aleady think of ourselves as a family of five (not four). I can't unmake Harry. He's not here, exactly, but he most certainly isn't 'gone' either. Oh, but I do wish I could talk to him. Hear him talk. Oh and what I would give to hold him again.
It scares me that life moves on and that we move on and keep going, because we have no choice but to do othersise. While Harry, Harry will always be that little boy who was with us for just 16 months and died of this ridiculously rare cancer. That is what I worry about now, the distance, the ever growing distance between Harry and where life is now and making sure I always have a way to cross that chasm to never lose touch or hold on Harry. On who he was and how wonderful those 16 months were with him.
On an entirely different note, our home renovations are coming along slowly but surely. The siding started going on yesterday and it promises to be a good week weather wise, so hopefully they'll get most of the exterior done now. We can't wait to move back home. As wonderful as it is to have a great place to stay. This experience is making us appreciate our home more than ever! I *really* will post pictures soon!
Love,
Cynthia
Friday, October 16, 2009
Packing Up Harry's Room
Well, I have done it.
I spent the morning at the house and packed up Harry's room. So now it is just boxes that need to be put in the storage container. His crib, which needs to be taken down and stored too, and the rocking chair and little bookshelf.
And his dresser. Still didn't know quite what to do with his clothes. I am very tempted to just leave them in his dresser and cover it with plastic and leave it in the room and deal with when we move back in. I guess I'll decide with Henry on the weekend.
The actual doing of it wasn't nearly so bad as the anticipation and planning of the activity. I find that usually is the case - the anticipation of an experience without Harry tends to be worse than the actual living through the experience.
I find that my usual method of having a big cry as I anticipate and prepare and then writing about it on the blog - which is somehow so cathartic for me - usually translates into the actual event not being as bad as I had imagined. Doesn't mean it is easy, just that it is never quite as bad as I manage to paint it in my imagination.
Now our house is really empty. I swear I am never moving again once this renovation is finished! I took some pictures this morning and will post soon.
Love,
Cynthia
I spent the morning at the house and packed up Harry's room. So now it is just boxes that need to be put in the storage container. His crib, which needs to be taken down and stored too, and the rocking chair and little bookshelf.
And his dresser. Still didn't know quite what to do with his clothes. I am very tempted to just leave them in his dresser and cover it with plastic and leave it in the room and deal with when we move back in. I guess I'll decide with Henry on the weekend.
The actual doing of it wasn't nearly so bad as the anticipation and planning of the activity. I find that usually is the case - the anticipation of an experience without Harry tends to be worse than the actual living through the experience.
I find that my usual method of having a big cry as I anticipate and prepare and then writing about it on the blog - which is somehow so cathartic for me - usually translates into the actual event not being as bad as I had imagined. Doesn't mean it is easy, just that it is never quite as bad as I manage to paint it in my imagination.
Now our house is really empty. I swear I am never moving again once this renovation is finished! I took some pictures this morning and will post soon.
Love,
Cynthia
Wednesday, October 14, 2009
Harry's Room
Thanks for the suggestions. I know I should probably buy a nice box of some sorts for the clothes of Harry's I want to keep.
One of the challenges is that I have to figure out which of his clothes I am okay with the new baby wearing and which ones are just "too Harry" for anyone else to wear. I just don't feel ready to make those decisions. Yet that is usually the way isn't it - life thrusts us into situations where we have to make decisions before we are ready.
I'm debating just pushing his dresser into the middle of his room and wrapping it well in plastic and not doing anything until the reno is over. I know it just isn't realistic to figure on buying the baby an entirely new wardrobe - I'm already too much of a Winnipegger to go to that sort of extravagence! I know Harry would want his little brother to wear some of his clothes. I think I'll be okay with the baby clothes. It is going to be the outfits he wore post-diagnosis and especially the ones in the months just before he passed over. I think those ones will just hold too much of Harry's energy for anyone else to wear.
So I know at some point I have to sort through all his clothes and decide what to save as special and what to give to the baby. But I just don't want to do that right now! Maybe I'll start with everything else in his room and leave the dresser till the last and in the process it will come to me what to do.
Siobahn - we did receive the lovely book - thank you so much. It was so incredibly kind of you to think to buy it and send it. I have been so bad at sending emails ever since Harry was diagnosed. I read them, but take forever to respond!
Peace,
Cynthia
One of the challenges is that I have to figure out which of his clothes I am okay with the new baby wearing and which ones are just "too Harry" for anyone else to wear. I just don't feel ready to make those decisions. Yet that is usually the way isn't it - life thrusts us into situations where we have to make decisions before we are ready.
I'm debating just pushing his dresser into the middle of his room and wrapping it well in plastic and not doing anything until the reno is over. I know it just isn't realistic to figure on buying the baby an entirely new wardrobe - I'm already too much of a Winnipegger to go to that sort of extravagence! I know Harry would want his little brother to wear some of his clothes. I think I'll be okay with the baby clothes. It is going to be the outfits he wore post-diagnosis and especially the ones in the months just before he passed over. I think those ones will just hold too much of Harry's energy for anyone else to wear.
So I know at some point I have to sort through all his clothes and decide what to save as special and what to give to the baby. But I just don't want to do that right now! Maybe I'll start with everything else in his room and leave the dresser till the last and in the process it will come to me what to do.
Siobahn - we did receive the lovely book - thank you so much. It was so incredibly kind of you to think to buy it and send it. I have been so bad at sending emails ever since Harry was diagnosed. I read them, but take forever to respond!
Peace,
Cynthia
Tuesday, October 13, 2009
Packing Up Harry's Room
I have to pack up Harry's Room.
I don't know how to do this.
We are in the middle of a major renovation of our house - so major that three weeks ago we moved out into a friend's house. (Aside: We were super fortunate that this friend / former colleague of Henry's has moved back to the US to take up a tenure track position in Denver and his beautifully renovated house on the river here in Winnipeg has not yet sold. He is kindly letting us stay here during our renovations. If anyone is looking to buy a beautiful river lot in Winnipeg drop us a line!!!)
Our main floor is basically gutted, as are our bathroom, watercloset, linen closet & half of the back bedroom on the second floor and the hallway / stairwell wall between the second and third floors of our house. We have moved everything out of our house and put it in storage, either in the basement or in a storage container. Every single room is now packed up and basically empty, or with the remaining furniture pushed into the middle of the room and covered in tarps.
Except Harry's room.
I have not yet had the courage to face packing up Harry's room.
I thought it would be easier to do this way. That is, since we are packing up everything else it wouldn't feel like such an individual or final act. We're not just packing up Harry's room, we're packing up everything in the house.
But it isn't the same. It feels incredibly final and I just don't want to do it.
We'll unpack everything else. In a few months, everything else will come out of the boxes and be put back into its place where ever it belongs in the house.
Except for Harry's things. Harry's room will never again be Harry's room after the renovations. It's going to be our office. We're giving the baby our room and we're moving to the back bedroom, because I want the baby to have his own space, not his brother's space. But once I pack these things up, they will never be put out in the same space. This is a letting go that feels so overwhelming, it almost feels like a betrayal to Harry. Though I know in my heart it isn't. He isn't in that room anymore. He is everywhere in the universe and always in our hearts. But still it is so final a thing to pack up his room.
I don't want to touch it.
I tried yesterday afternoon.
Henry and I spent a few hours in the house, finally finishing up cleaning out the last bits in our room. I still had some time before we had to go back to Kingston Row (where we're staying) to prepare for Thanksgiving Dinner. I went into Harry's room and sat in my rocking chair, surveyed the room, trying to decide where to start, and I couldn't do it.
I sat and held onto his baby blanket, cuddled on my shoulder just as I had held him in it so many days and nights, and rocked in the chair and cried and cried and cried. I cried so hard I could barely breathe.
I don't want to change a thing about his room.
I don't want to take down his crib. I don't want to pack his books off his shelf. I don't want to pack away his shoes - his yellow crocks and his brown squeekers. I have so many memories of sitting for hours nursing him in that chair. I don't want to not be able to sit in that chair and remember him there.
The chair is in front of the window and a toy wooden block train sits on the window ledge. Sometimes, even in the middle of the night, Harry would finish nursing and instead of falling back to sleep on my shoulder he would reach over my shoulder for one of the train pieces. So I would sit with him, at 3:00 am and we'd play with the train in my lap and he'd laugh and laugh. Until he would get sleepy again, start to lose interest in the toy, and I could cuddle him in again, resting his head on my shoulder, one of the blocks from the train clutched in his chubby hand. We'd rock, I'd kiss his soft head and he'd drift off. I'd eventually pull the toy from his relaxed grasp and gently place him back into his crib.
Will I lose those memories if I can't sit in his room and remember them?
I most certainly don't know what to do with his clothes. I am afraid to open his closet and take out his clothes and pack them up.
They still smell like Harry. Even though I have washed all of them since he passed over, they still smell like him. Especially in his last few weeks he had a really distinct smell about him, and that smell still lingers strongly on his clothes. When I need to I can go into his room, open his closet, take out one of my favourites of his outfits, inhale deeply and still smell him.
I am terrified that if I pack up everyting and put it in a box it will lose its smell, his wonderful Harry smell. I am not ready to let that go.
So I am not sure what to do. I need to pack up his room, so they can put in the new wndows and paint the walls. But I can't touch his clothes. I don't want to just leave them in his room, because they'll get too dusty, and have to be washed, and then they might not smell right anymore. But I am not ready to move his things out of his dresser. But I have to decide soon, the decision can't wait forever.
I guess I just have to sit and still my mind and listen to my heart. It hasn't led me wrong so far where Harry is concerned. I have to trust that it will lead me to the right choice in this case too. I have to figure out some sort of compromise. Does anyone know a way to capture and bottle a smell? Not the essence of a flower or plant, but just a smell left clinging to clothes? I wish I knew how.
Maybe one day I won't need the smell of Harry. But I am not there now. Right now I need that smell to still have my connection to him. I try to always think, "what would Harry want me to do?" "What would honour him in the best way?" But I am just not sure.
But somehow this week, I have to figure this out and figure out how to do this.
Love,
Cynthia
I don't know how to do this.
We are in the middle of a major renovation of our house - so major that three weeks ago we moved out into a friend's house. (Aside: We were super fortunate that this friend / former colleague of Henry's has moved back to the US to take up a tenure track position in Denver and his beautifully renovated house on the river here in Winnipeg has not yet sold. He is kindly letting us stay here during our renovations. If anyone is looking to buy a beautiful river lot in Winnipeg drop us a line!!!)
Our main floor is basically gutted, as are our bathroom, watercloset, linen closet & half of the back bedroom on the second floor and the hallway / stairwell wall between the second and third floors of our house. We have moved everything out of our house and put it in storage, either in the basement or in a storage container. Every single room is now packed up and basically empty, or with the remaining furniture pushed into the middle of the room and covered in tarps.
Except Harry's room.
I have not yet had the courage to face packing up Harry's room.
I thought it would be easier to do this way. That is, since we are packing up everything else it wouldn't feel like such an individual or final act. We're not just packing up Harry's room, we're packing up everything in the house.
But it isn't the same. It feels incredibly final and I just don't want to do it.
We'll unpack everything else. In a few months, everything else will come out of the boxes and be put back into its place where ever it belongs in the house.
Except for Harry's things. Harry's room will never again be Harry's room after the renovations. It's going to be our office. We're giving the baby our room and we're moving to the back bedroom, because I want the baby to have his own space, not his brother's space. But once I pack these things up, they will never be put out in the same space. This is a letting go that feels so overwhelming, it almost feels like a betrayal to Harry. Though I know in my heart it isn't. He isn't in that room anymore. He is everywhere in the universe and always in our hearts. But still it is so final a thing to pack up his room.
I don't want to touch it.
I tried yesterday afternoon.
Henry and I spent a few hours in the house, finally finishing up cleaning out the last bits in our room. I still had some time before we had to go back to Kingston Row (where we're staying) to prepare for Thanksgiving Dinner. I went into Harry's room and sat in my rocking chair, surveyed the room, trying to decide where to start, and I couldn't do it.
I sat and held onto his baby blanket, cuddled on my shoulder just as I had held him in it so many days and nights, and rocked in the chair and cried and cried and cried. I cried so hard I could barely breathe.
I don't want to change a thing about his room.
I don't want to take down his crib. I don't want to pack his books off his shelf. I don't want to pack away his shoes - his yellow crocks and his brown squeekers. I have so many memories of sitting for hours nursing him in that chair. I don't want to not be able to sit in that chair and remember him there.
The chair is in front of the window and a toy wooden block train sits on the window ledge. Sometimes, even in the middle of the night, Harry would finish nursing and instead of falling back to sleep on my shoulder he would reach over my shoulder for one of the train pieces. So I would sit with him, at 3:00 am and we'd play with the train in my lap and he'd laugh and laugh. Until he would get sleepy again, start to lose interest in the toy, and I could cuddle him in again, resting his head on my shoulder, one of the blocks from the train clutched in his chubby hand. We'd rock, I'd kiss his soft head and he'd drift off. I'd eventually pull the toy from his relaxed grasp and gently place him back into his crib.
Will I lose those memories if I can't sit in his room and remember them?
I most certainly don't know what to do with his clothes. I am afraid to open his closet and take out his clothes and pack them up.
They still smell like Harry. Even though I have washed all of them since he passed over, they still smell like him. Especially in his last few weeks he had a really distinct smell about him, and that smell still lingers strongly on his clothes. When I need to I can go into his room, open his closet, take out one of my favourites of his outfits, inhale deeply and still smell him.
I am terrified that if I pack up everyting and put it in a box it will lose its smell, his wonderful Harry smell. I am not ready to let that go.
So I am not sure what to do. I need to pack up his room, so they can put in the new wndows and paint the walls. But I can't touch his clothes. I don't want to just leave them in his room, because they'll get too dusty, and have to be washed, and then they might not smell right anymore. But I am not ready to move his things out of his dresser. But I have to decide soon, the decision can't wait forever.
I guess I just have to sit and still my mind and listen to my heart. It hasn't led me wrong so far where Harry is concerned. I have to trust that it will lead me to the right choice in this case too. I have to figure out some sort of compromise. Does anyone know a way to capture and bottle a smell? Not the essence of a flower or plant, but just a smell left clinging to clothes? I wish I knew how.
Maybe one day I won't need the smell of Harry. But I am not there now. Right now I need that smell to still have my connection to him. I try to always think, "what would Harry want me to do?" "What would honour him in the best way?" But I am just not sure.
But somehow this week, I have to figure this out and figure out how to do this.
Love,
Cynthia
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