last night mia had her first real fussy night and wanted to be fed every 30 minutes. we were having a dinner party and i am still not at the point where i just whip out my boob anywhere to feed. anyway, i spent most of the night with mia in her room and while i was trying to settle her i was 'jigging' her. (definition of jigging: a dance like holding position where baby is in arms). suddenly i got a flash of a very poweful memory of me doing the same with sasha for hours and hours in her room. i began to sob. i immediately felt that we had to change mia's room to a different room in the house as more and more this room was filling up with more and more memories of sasha. i have decided to rearrange some things in the meantime and then see how the shuffle works out. this week has been a tough one. i seem to be missing sasha more and more. the pain in my heart and the heaviness in my eyes doesn't seem to be leaving me. i was visting a friend this week and she was looking after a little girl who is just over 1 year. this little girl reminded me so much of sasha. she had the same scrunched smile expression, same sitting position and same bobbing of the head 'no' when she didn't want something. i left my friends house thinking of how much i missed her and thats all i keep thinking about....how much i miss her. i need to keep her memory alive to help me get through this so.......i am asking anyone and everyone to send me your memories of sasha via email or blog to me....i really want to hear stories about sasha and what you all miss about her. thanks in advance. speak soon.
the unpredictable
i remember after my father passed away and life became more normal, my grief would appear out of nowhere and the sadness would be overwhelming. as the days pass, as we get into a bit of a routine, as sasha is always in my heart; i haven't had a real good block of time to grieve and the grief hits me hard. i miss her companionship and love and the routine i had with her. i review her last 6 months of lif
e in my head and make a list of everything that went wrong. there are so many things i wish we had done differently. there were so many opportunities for improvement that got lost in all the chaos.
i am hoping that i can find the time to grieve so that it doesn't keep creeping up on me. i miss you peach....
e in my head and make a list of everything that went wrong. there are so many things i wish we had done differently. there were so many opportunities for improvement that got lost in all the chaos.i am hoping that i can find the time to grieve so that it doesn't keep creeping up on me. i miss you peach....
30 days ago, today
I think of Sasha every day, each time there is a little heart pain, and smiles that turn to frowns and back and forth.
Last Saturday we walked through the crowds at Salsa On St Clair enjoying the salsa, smells of barbeque, loud eclectic music, thinking how much she loved looking at people and being in crowds. We listened awhile to the South American band with pan pipes and guitars belting out the hypnotising melodies of the Andies. Down the street a big drumming team pounded and whistled vigorously. Sasha was smiling for sure.
On our way home we walked down through a school onto Tyrel. While navigating the blue water pipes snaking along the pavements, Pamela stopped pushing Mia's stroller and remembered We walked down this street with Sasha on our last walk together as a family.
At synagogue I shuddered when they said Sasha Bella Stein-Blumberg as the first name before Kaddish. As a kid I was curious about the list of the names of the people who died on that day in years past and I would listen to the name intently. I knew they were connected to families, some of whom might be in the audience. Even when my grandfather's name started to be recited it did not feel strange, he died at 79 after a full life. When I went this week, Sasha was the second name listed.
Today I went to talk with Sick Kids to talk about getting access and copies of Sasha's record and Linda Burke walked me through the ten volumes of her files. I saw the drawings Dr. Russell made of her heart when she was a week old, the doctor's notes, the CCU summaries, page after page, thousands in all, including the double sided 3 panel nurses day sheets from 6C and 4D that I used to look at every morning. There are about 5 volumes for her first 18 months and 5 volumes for the 5 monthes we stayed at Sick Kids after her second surgery.
It was the Sick Kids family picnic and lots of nurses, doctors, patients and parents were sitting on the grass or lining up for food or playing with the entertainers. I walked over to a small group sitting on one of the tree boxes that line University Avenue, it was two pharmacists from CCU, a pharmacist from 4D and some friends, I expect also pharmacists. The CCU nurses had not yet heard that Sasha had passed away. We did not go say goodbye to CCU when we left hospital, it was too raw and painful.
Our insurance agent called me the other week to say, Sorry to bring this up but there is a death benefit of $2,500 from the insurance policy. She came into the boardroom and it seemed neither of us wanted to stop the small talk about internet challenges and small business to get down to sign the death notice. I look forward to putting that into her fund. We have given it more thought and think that a yearly award for doctors and nurses would be a good way to remember her: we need to figure out the details and see what else is offered however we think it will recognise a doctor or nurse who helps advance family centred and palliative care.
We talk about Sasha every day, I still catch myself from saying Sasha when speaking of Mia and Sasha inserts herself into my thoughts all the time, while I am on the phone and see a piece of her clothing, walking and seeing a stroller, riding my bike and realizing she will never sit on a kid bike seat behind me or ride her own tricycle.
Ethan and Theo and Lisa visited Sunday and I loved playing soccer with them and then Ethan and John Jr from next door. Our neighbour is a busy Greek grandmother in her seventies who still mows her lawn and shovels her drive and she was shouting Bravo as they took penalty kicks at me kneeling on the grass and trying to flick the plastic ball away from their feet. Imagine, Mia will be the referee in a year or so.
Already we think of the unveiling and placing of the headstone on her grave, it will be in the spring, when the birds chirp again after the winter. Sasha, I miss you so much. Goodnight sweetpea.
Words are hard to come by
Jonathan pointed out today that our blogs have slowed down. As we are adapting to having Mia and not having Sasha, we seem to have less to say. Although I don't think this is necessarily 100% true. Yesterday we met with a reporter from the Toronto Star who has taken some interest in writing an article about Sasha. We talking with her for 3 hours and Jonathan and I became emotional has we described Sasha's complicated life. Its amazing that she only lived 2 years and it seemed as I had known her forever. It turned out to be a wonderful day. Jonathan worked from home for the rest of the day and we managed to take Sammy for a nice walk to the village. Mia's seems to enjoy the stroller as much as Sasha and its always relaxing to walk through the ravine and parks in our neighborhood. Sam is becoming more territorial of Mia and I and appreciate his hard work when we are walking.
While we were speaking with the reporter, I was staring at Sasha's kitchen. My mom found this amazing kid's kitchen at a garage sale last summer and Sasha loved it. Sasha loved the kitchen and I could visualize her playing with it. She used to hide things in the microwave and right before her surgery she put some of my things in it. I left them in there until we returned from the hospital in May with the hopes that she would remember and start playing. She took little interest in it when were returned home and I eventually took the items out of the kitchen. I loved playing with Sasha and I would neglect all my household duties so that I could spend my day playing with her. I remember the feeling hanging out with and LOVING it.
Last night I asked Jonathan if he thinks Sasha can see us. My biggest fear right now is that she can see us and wants to be with us but can't. I am afraid that she is scared and confused. I worry that she doesn't why she is not with us and no one to is with her to love her and comfort and play with her. I wish there was a window to the 'other side' so that I could see that she is safe and happy. Why is death so mysterious? Why do people always use this phrase to comfort people who are grieving: " So and so is a better place". To me thats bulls**t. The best place for Sasha to be is with her family not in a unknown place with none of us.
Anyway, Mia is calling me and she is becoming more and more demanding just like her sister.....and I wouldn't have it any other way!
While we were speaking with the reporter, I was staring at Sasha's kitchen. My mom found this amazing kid's kitchen at a garage sale last summer and Sasha loved it. Sasha loved the kitchen and I could visualize her playing with it. She used to hide things in the microwave and right before her surgery she put some of my things in it. I left them in there until we returned from the hospital in May with the hopes that she would remember and start playing. She took little interest in it when were returned home and I eventually took the items out of the kitchen. I loved playing with Sasha and I would neglect all my household duties so that I could spend my day playing with her. I remember the feeling hanging out with and LOVING it.
Last night I asked Jonathan if he thinks Sasha can see us. My biggest fear right now is that she can see us and wants to be with us but can't. I am afraid that she is scared and confused. I worry that she doesn't why she is not with us and no one to is with her to love her and comfort and play with her. I wish there was a window to the 'other side' so that I could see that she is safe and happy. Why is death so mysterious? Why do people always use this phrase to comfort people who are grieving: " So and so is a better place". To me thats bulls**t. The best place for Sasha to be is with her family not in a unknown place with none of us.
Anyway, Mia is calling me and she is becoming more and more demanding just like her sister.....and I wouldn't have it any other way!
Lessons for Alagille Syndrome?
Kids with Alagille Syndrome range quite widely in the extent of the misformation of their heart and liver. Sasha had no pulmonary artery connecting heart and lungs: a big hole between her heart chambers let the blood mix and a number of very small arteries brought blood to her lungs. Some AGS kids have very mild forms of stenosis.
It was explained to us early on that the decisions surrounding a child who just has a heart condition is very much complicated when the liver is also compromised. Particularly, the option of a liver transplant is not available to those with serious cardiac conditions.
The hope is that the liver can improve over time as the heart improves. However as Sasha's heart was repaired by surgery, improving blood flow, her liver deteriorated. It is assumed that she developed portal hypertension (the pressure differential demonstrating the condition was going to be measured in IGT had we decided to go ahead with the TIPS procedure) and this produced bleeding varices which ended Sasha's life.
We think there is a lesson there for Alagille Syndrome children with serious heart conditions. The extent of the liver damage (paucity of bile ducts) is unknown. Some livers can hold their own for some years with medical supports and even improve, others deterioriate with some failing quickly.
The difference between the second two categories (slow vs fast liver deterioration) is not well understood.
In Sasha's life we think there were two impacts. The bleeding episode just after her first birthday is suggestive of early portal hypertension. This may suggest that as her blood flow improved, with cathetarizations and a first surgery at three months, her liver condition deteriorated. Does the liver deteriorate on its own or does the extra flow of blood to the liver potentially impact negatively on the liver.
Then in CCU she bled after surgery for several days and her lower organs were deprived of blood and the numbers showed the liver in a toxic condition, approaching failure, and then the numbers improved progressively. This impact to her liver might have further worsened the naturally occuring portal hypertension.
It was explained to us early on that the decisions surrounding a child who just has a heart condition is very much complicated when the liver is also compromised. Particularly, the option of a liver transplant is not available to those with serious cardiac conditions.
The hope is that the liver can improve over time as the heart improves. However as Sasha's heart was repaired by surgery, improving blood flow, her liver deteriorated. It is assumed that she developed portal hypertension (the pressure differential demonstrating the condition was going to be measured in IGT had we decided to go ahead with the TIPS procedure) and this produced bleeding varices which ended Sasha's life.
We think there is a lesson there for Alagille Syndrome children with serious heart conditions. The extent of the liver damage (paucity of bile ducts) is unknown. Some livers can hold their own for some years with medical supports and even improve, others deterioriate with some failing quickly.
The difference between the second two categories (slow vs fast liver deterioration) is not well understood.
In Sasha's life we think there were two impacts. The bleeding episode just after her first birthday is suggestive of early portal hypertension. This may suggest that as her blood flow improved, with cathetarizations and a first surgery at three months, her liver condition deteriorated. Does the liver deteriorate on its own or does the extra flow of blood to the liver potentially impact negatively on the liver.
Then in CCU she bled after surgery for several days and her lower organs were deprived of blood and the numbers showed the liver in a toxic condition, approaching failure, and then the numbers improved progressively. This impact to her liver might have further worsened the naturally occuring portal hypertension.
A path and home for the dead at Sick Kids
We get many communications from other parents, here is an email from yesterday: "I have read through Sasha's website and your blog and cannot begin to tell you how much it has touched me. The fact that my youngest, Laine, is the same age almost exactly as Sasha makes it particularly close to home - no parent can imagine losing their child and I definitely cannot imagine being able to handle such an experience with the grace, strength and courage that you have. May you be able to take some comfort in know that you did all the right things for her and that the world is a better place for her having been here even for such a short time."
Laine is such a beautiful name, it comes from the old English literally means a lane or "path". Sasha's experience was a journey where the path at times was unclear and perhaps every parent has to construct their own path.
Our "laine" is to honour Sasha. We think one way I can do this is by asking how we construct this path together, to speak about the guides that help us break ground, untangle a thicket of questions, hold a candle in the night, disperse the mist as the sun breaks through the night. These special guides are doctors and nurses and counsellors and a special group in palliative care who talk about death in a place focused on life.
We are so grateful we had Sasha and we know the world is a better place for her presence in life and in death. We know she touched so many; her love overflowed; her struggle inspired. This is enough. To look for more purpose is not necessary but I think it is natural to ask: what was learned? How can parents be helped more?
On the surgical side, as Sasha's heart was repaired, improving blood flow, her liver unfortunately deteriorated and I explore this more in a separate post. Sick Kids saves kids who come down with extreme diseases by quick diagnosis and advanced care and ongoing treatment. To a parent this is where science approaches the miraculous, their kid is fixed, there will be followup however life continues. Sasha and others fall into a different category of extreme medical reengineering where there is time to ponder the route to take, to involve the parents in very difficult decisions about life and death. As surgical boundaries expand and more difficult cases are taken on, they raise questions for us all.
What is the place of the dying at Sick Kids? What marks the time when we transition from living to dying? Where is the home for the dead at Sick Kids?
A critical juncture for children with congenital conditions is the first decision to intervene. This difficult discussion in our case was sensitively undertaken by Sasha's cardiologist. Dr Russell showed us what Sasha's heart looked like (she was not yet diagnosed with Alagille Syndrome) , she explained the condition was severe, she asked the surgical team if they felt they could help and the team agreed to try help Sasha, agreed that they could so something. Dr Russell and Dr Van Arsdell explained there were no guarrantees naturally. The future was uncertain. When we returned again and again to how much time Sasha might have it was clearly explained that no one knew, that what Sick Kids offered was a surgical plan that would consider all the information to best help her. The doctors offered best medical knowledge and a logical and consistent framework for us. They gave us hope.
The councelling of the parent as they decide to embark on a series of surgeries possibly over many years is a very critical juncture because the building of a framework for understanding a surgical plan starts to build momentum. Once you build momentum, should we not empower the parent also to feel they can stop the process? Part of us did not want the second surgery to happen however we were not of the mind to slow down the surgical plan.
Helping parents see the choice in all its complexity to fully understand the decision, the impact on them, on their family, the balance of benefit and risk and cost, however surely also requires considering the alternative to the surgical plan. I am not sure this is the doctor's role. So what if another person were to now enter and help the parents explore. Our hardest realisation was that Sasha was not going to be "fixed" and the decision coming out of that realisation was to take Sasha home and stop the transfusions. To realise that every transfusion was the putting off of a decision, while Sasha was marginally reduced each time, her body slightly less able to heal itself. We came to the decision to end transfusions with the help of councellors at The Tammy Letner Centre after two years. We think the special expertise of palliative care should be brought to bear at the beginning, not at "the end".
We also have to ask Sick Kids, where do you celebrate the dead? As you walk into Sick Kids you may see a big poster with a beautiful smiling infant and the slogan "Imagine every child healthy". Does "healthy" describe the organ transplant and cancer heroes? Can we imagine the very sick kids who move from surgical to palliative care and whose lives are still immeasurably impacted by Sick Kids.
As you walk further you get to the Jim Pitblado footsteps and can see young feet skipping along the colourful shoes. The walls celebrate the generous donors. There is a call to recognize the silent heroes, those whose death provide organs and life to others. Can there not also be a place to remember the dead and all they contributed?
Can we grow a peach tree for all the peaches? Beside the computer allowing donations, is there a place for a computer that celebrates the souls who leave their bodies behind at Sick Kids. They were treated well by Sick Kids, so they will revisit.
Surely the dead need a small physical home at Sick Kids? Surely we improve the experience of the living if the dead have a bigger place in the realm of ideas that frame parents' decision making?
Laine is such a beautiful name, it comes from the old English literally means a lane or "path". Sasha's experience was a journey where the path at times was unclear and perhaps every parent has to construct their own path.
Our "laine" is to honour Sasha. We think one way I can do this is by asking how we construct this path together, to speak about the guides that help us break ground, untangle a thicket of questions, hold a candle in the night, disperse the mist as the sun breaks through the night. These special guides are doctors and nurses and counsellors and a special group in palliative care who talk about death in a place focused on life.
We are so grateful we had Sasha and we know the world is a better place for her presence in life and in death. We know she touched so many; her love overflowed; her struggle inspired. This is enough. To look for more purpose is not necessary but I think it is natural to ask: what was learned? How can parents be helped more?
On the surgical side, as Sasha's heart was repaired, improving blood flow, her liver unfortunately deteriorated and I explore this more in a separate post. Sick Kids saves kids who come down with extreme diseases by quick diagnosis and advanced care and ongoing treatment. To a parent this is where science approaches the miraculous, their kid is fixed, there will be followup however life continues. Sasha and others fall into a different category of extreme medical reengineering where there is time to ponder the route to take, to involve the parents in very difficult decisions about life and death. As surgical boundaries expand and more difficult cases are taken on, they raise questions for us all.
What is the place of the dying at Sick Kids? What marks the time when we transition from living to dying? Where is the home for the dead at Sick Kids?
A critical juncture for children with congenital conditions is the first decision to intervene. This difficult discussion in our case was sensitively undertaken by Sasha's cardiologist. Dr Russell showed us what Sasha's heart looked like (she was not yet diagnosed with Alagille Syndrome) , she explained the condition was severe, she asked the surgical team if they felt they could help and the team agreed to try help Sasha, agreed that they could so something. Dr Russell and Dr Van Arsdell explained there were no guarrantees naturally. The future was uncertain. When we returned again and again to how much time Sasha might have it was clearly explained that no one knew, that what Sick Kids offered was a surgical plan that would consider all the information to best help her. The doctors offered best medical knowledge and a logical and consistent framework for us. They gave us hope.
The councelling of the parent as they decide to embark on a series of surgeries possibly over many years is a very critical juncture because the building of a framework for understanding a surgical plan starts to build momentum. Once you build momentum, should we not empower the parent also to feel they can stop the process? Part of us did not want the second surgery to happen however we were not of the mind to slow down the surgical plan.
Helping parents see the choice in all its complexity to fully understand the decision, the impact on them, on their family, the balance of benefit and risk and cost, however surely also requires considering the alternative to the surgical plan. I am not sure this is the doctor's role. So what if another person were to now enter and help the parents explore. Our hardest realisation was that Sasha was not going to be "fixed" and the decision coming out of that realisation was to take Sasha home and stop the transfusions. To realise that every transfusion was the putting off of a decision, while Sasha was marginally reduced each time, her body slightly less able to heal itself. We came to the decision to end transfusions with the help of councellors at The Tammy Letner Centre after two years. We think the special expertise of palliative care should be brought to bear at the beginning, not at "the end".
We also have to ask Sick Kids, where do you celebrate the dead? As you walk into Sick Kids you may see a big poster with a beautiful smiling infant and the slogan "Imagine every child healthy". Does "healthy" describe the organ transplant and cancer heroes? Can we imagine the very sick kids who move from surgical to palliative care and whose lives are still immeasurably impacted by Sick Kids.
As you walk further you get to the Jim Pitblado footsteps and can see young feet skipping along the colourful shoes. The walls celebrate the generous donors. There is a call to recognize the silent heroes, those whose death provide organs and life to others. Can there not also be a place to remember the dead and all they contributed?
Can we grow a peach tree for all the peaches? Beside the computer allowing donations, is there a place for a computer that celebrates the souls who leave their bodies behind at Sick Kids. They were treated well by Sick Kids, so they will revisit.
Surely the dead need a small physical home at Sick Kids? Surely we improve the experience of the living if the dead have a bigger place in the realm of ideas that frame parents' decision making?
What a wonderful day
mia and i had a wonderful morning walking sammy and enjoying the sun. burly came by for a visit and i was looking forward to our visit with tessie and riley. to my surprise when part of the 4D dream team came by for a visit, they brought grace along too!!!!!yippee what a great surprise. little do riley and tessie know from this point forward whenever they come visit the expectation is now that they will have to bring a surprise guest:)
with a yummy cake and gifts for mia, we spent the next 3+ hours chatting away. i love spending time with them and everytime i see them , i realize how important they were to our whole experience with sasha. i consider many of the people from HSC, specifically 4D family. they saw us at our best, worst, and everything in between. they helped me reach one of the most difficult decisions of my life: bringing sasha home. they were always there to listen, to laugh, to educate and most importantly to love and care for sasha. i hope that we have many more visits from all the people who knew sasha. nowadays i find it helpful to talk about sasha to people who knew her. i still become very sad but i love sharing her stories with the nurses who knew her post-op. i just want to let everyone know on 4D that you all had such an important role and impact on our lives and thank you for loving our peach.
3 weeks have passed...
it has been 3 weeks since Sasha died even though in many ways it seems like years ago. Our house is so quiet that sometimes i imagine her sounds. sasha was rarely quiet or silent. she was always making some sort of noise, whether it was her grunting as she walked along the walls, or singing and talking with me. i remember when she was in ccu and she was intubated, my biggest fear is that i would never hear her sweet voice anymore. i remember that when i did hear her voice i was so thankful and i was so hopeful that she was going to bounce back. my hopes were crushed as sasha never seemed to reach the point of where she was before her surgery but i could hear her voice. her sweet little voice warmed my heart and made me so happy. i always wondered how such a little person could be so expressive and could have to say. i would spend my days talking and talking to sasha that by the end of the day i was all talked out. now the house is so quiet with only the occasional squeal of mia, which sometimes sounds like sasha.
i spent the morning with friends. matt was the last of my visitors and he brought a beautiful pink orchid plant. i was just thinking yesterday about buying one in memory of sasha. i loved matt's enthusiasm to meet mia as we sat in her room staring at her sleeping in her crib i could sense that he was thinking about sasha. matty never spent a ton of time with her but whenever he was home for a visit, he made sure to spend some time with her and that always made me so happy. while we were in the computer room, matt had said that it was such a good idea to get the photographer over to take the photos of us when we brought sasha home. i told him that heather volunteers her time and then i asked him if wanted to see the the slideshow compilation she made for us. i was surprised i offered as i haven't looked at it in over a month. matt and i sat in the computer room with tears streaming our faces. the reality of me missing her becomes so raw at times. i love having great friends like matt in my life whom share all my happiness as well as some of my sadness with.
Improving Family Centred Care
We thought alot how as parents we could help nurses and doctors and how our advocasy for Sasha was a part of their work and how they responded to our increasing levels of stress and concern and requests. Always, and especially when surgery does not turn out well, parent's knowledge that they did the best they could with their kid's caregivers is deeply meaningful.
Doctors and nurses have to convey routine and life changing information. We all wait for those words, She/he is fine. I am happy with how she/he responded. And what is said to parents and how it is said stays with them for life.
The mirror image of hospital success stories are those stories with unhappy outcomes. Unhappy outcomes are a challenge in hospitals that celebrate success so publically and as surgeons take on more extreme interventions and preemie support, more infants, babies and toddlers will die later despite the most valiant efforts.
Perhaps the deepening supports for palliative care can now be celebrated and death be more visible beyond immediate families and their informal network of other parents that share updates in elevators and the halls, lounges and cafetarias.
When our baby was rushed out of the room at birth and we later saw them in a warm glass incubator in NICU and when we rushed into the post op waiting room and then CCU after surgery, we carried our hearts in our hands. Actually our hearts were in our care givers hands as they approach with a picture of an organ or a smile to update you.
Parents have intense hope, worry and anticipation of the few words that will change their life. He has a very rare form of ... Such and such numbers are high or low. It is larger than we thought. There is a lot of swelling. She has a fever.How these words are delivered will impact those parents for life, as will the response of the caregivers to parent advocasy. This parent advocasy assists caregivers but sometimes, especially with a medical crash course via the internet, we can pitch a stready stream of questions and requests. We advocated relentlessly for Sasha.
Under very difficult circumstances, with Pamela and I trying to understand each step of Sasha's care and what we could do to help, Sick Kids engaged us in an exemplary fashion with very few exceptions.
The exceptions demonstrate the rule, they offer flashes of recognition that tremendous pressures are being brought to bear on people with different experiences and education and support and happiness in their own life.
Sasha's story is one of heroic personal development in the face of a multi organ bad hand, a long course of risky surgery akin to russian roulette, then a family and caregiver nightmare of cascading surgical complications, lengthy time in CCU, slow recovery on TPN, deepening challenges related to the underlying syndrome, an agonizing dilema over more interventions versus quality of life. You then end with a team that helps you face that heartbreaking realization that it is Enough and all that awaits is a death without pain either at the hospital, a hospice or the relative comfort of home.
Sasha's life demonstrates the commitment of Sick Kids to family centred care and helps us identify the stresses on the human supports as they deal with different parents, some of whose kids will live longer and some of whose kids are dying.
We think it would improve family centred if nurses had more palliative care resources. We also think that the line between living and dying is not so well defined and can be sensitively explored earlier than when the organs are in failure. In short we think family centred care can be improved by expanding the place for death in an institution devoted to life. It sounds contradictory, but then life is just that.
Doctors and nurses have to convey routine and life changing information. We all wait for those words, She/he is fine. I am happy with how she/he responded. And what is said to parents and how it is said stays with them for life.
The mirror image of hospital success stories are those stories with unhappy outcomes. Unhappy outcomes are a challenge in hospitals that celebrate success so publically and as surgeons take on more extreme interventions and preemie support, more infants, babies and toddlers will die later despite the most valiant efforts.
Perhaps the deepening supports for palliative care can now be celebrated and death be more visible beyond immediate families and their informal network of other parents that share updates in elevators and the halls, lounges and cafetarias.
When our baby was rushed out of the room at birth and we later saw them in a warm glass incubator in NICU and when we rushed into the post op waiting room and then CCU after surgery, we carried our hearts in our hands. Actually our hearts were in our care givers hands as they approach with a picture of an organ or a smile to update you.
Parents have intense hope, worry and anticipation of the few words that will change their life. He has a very rare form of ... Such and such numbers are high or low. It is larger than we thought. There is a lot of swelling. She has a fever.How these words are delivered will impact those parents for life, as will the response of the caregivers to parent advocasy. This parent advocasy assists caregivers but sometimes, especially with a medical crash course via the internet, we can pitch a stready stream of questions and requests. We advocated relentlessly for Sasha.
Under very difficult circumstances, with Pamela and I trying to understand each step of Sasha's care and what we could do to help, Sick Kids engaged us in an exemplary fashion with very few exceptions.
The exceptions demonstrate the rule, they offer flashes of recognition that tremendous pressures are being brought to bear on people with different experiences and education and support and happiness in their own life.
Sasha's story is one of heroic personal development in the face of a multi organ bad hand, a long course of risky surgery akin to russian roulette, then a family and caregiver nightmare of cascading surgical complications, lengthy time in CCU, slow recovery on TPN, deepening challenges related to the underlying syndrome, an agonizing dilema over more interventions versus quality of life. You then end with a team that helps you face that heartbreaking realization that it is Enough and all that awaits is a death without pain either at the hospital, a hospice or the relative comfort of home.
Sasha's life demonstrates the commitment of Sick Kids to family centred care and helps us identify the stresses on the human supports as they deal with different parents, some of whose kids will live longer and some of whose kids are dying.
We think it would improve family centred if nurses had more palliative care resources. We also think that the line between living and dying is not so well defined and can be sensitively explored earlier than when the organs are in failure. In short we think family centred care can be improved by expanding the place for death in an institution devoted to life. It sounds contradictory, but then life is just that.
I think of you
I think of you many times a day, with a smile or a shudder and closing of my throat and water teetering on an eyelid and I always try end with a smile but not always successfully. A flicker of the happiest and saddest images of my life and yours.
Memories of you gurgle, ear splitting shieks of excitement, wild hand gestures, accomplishments, fascinations, interests, lack of interests, Yeas, decisive Nays, wood floors and animal mural hospital corridors. All that blood flowing from your body. Wonderful weeks at home. Last laboured breaths.
Did we have the right to intervene in your natural order? were the interventions we subjected you to for you or us? did we challenge the teams to help you well enough? Your two precious years were such a special wonder to us, I hope so hard that you feel the same. You know my regrets. I can add the regret of not knowing you more. do you know how you are treasured? Was it enough for you? Did you know you were dying?
This stream flows each day, often set off by seeing a child about your age. This time a boy in a stroller, lollygagged at clowds, arched out of seat, steered by older parents past a Chinese fruit market with new bounce in their step.
What is the best way for us to give back?
From our hearts we thank the many people who contributed to The Sasha Bella Fund. We can now reflect and listen and work out together a use for that goodwill, a use that might help parents, nurses and doctors better care for children.
We deeply appreciate that the hospital takes seriously that parents and family are vital to the children they help. So we ask all the children and parents and families and caregivers for your thoughts on how family centred care can be further improved.
There are so many supports already in place. The doctors and nurses have multiple layers of specialists. There are also dedicated occupational and physical therapists, life skills specialists, clowns, music specialists, councellors and a patient rep to faciliate patient requests. We also heard of some attempts to setup parents groups, with mixed success.
No matter how well Sick Kids does now, we know they are also committed to continuous improvment.
So what do you think will help offer even better patient and family centred care? It could be a support for patients or their families or extra resources for the hospital.
We would love your suggestions or a story that shows how the family centred care worked or can be improved.
Thanks!
finding our new normal
We had a great time at the cottage although Sasha's memory followed me there. I can't seem to shake my sadness away. It has been nearly 2 weeks since Sasha has been gone and I keep questioning our decisions. I now understand how people can cling on to life. I have never been a clinger and I didn't want to become one when Sasha became ill. We agreed that we would try to not exhaust Sasha physically given the odds were against improving her quality of life. I keep tracking back to the week before her surgery and the sick feeling I had. I had a really bad feeling about her going in December and I should have stuck with my gut.
Jonny went back to work today and it was just Mia, Sam and me. We had a quiet day and I took Mia for the usual ravine walk where I used to take Sasha everyday. I thought about her the whole time and could not stop staring at how pink Mia's lips are. She is a beautiful gift, I just wish she had met her sister.
I decided to do a clean up of all Sasha's clothes and I can't seem to put the last of her clothes into a bin. I think I will keep them in the drawer until I forget that they are there and one day I will open them and think of her in all her big girl clothes.
Tomorrow is Malou's first day with us and we agreed that we will help her find another job part time and we will keep her on with us part time. We'll see how it goes and I may be able to have a couple hours to myself during the day...what on earth will I do.
Hope everyone is doing well and we look forward to finding our new normal...SOON!
Jonny went back to work today and it was just Mia, Sam and me. We had a quiet day and I took Mia for the usual ravine walk where I used to take Sasha everyday. I thought about her the whole time and could not stop staring at how pink Mia's lips are. She is a beautiful gift, I just wish she had met her sister.
I decided to do a clean up of all Sasha's clothes and I can't seem to put the last of her clothes into a bin. I think I will keep them in the drawer until I forget that they are there and one day I will open them and think of her in all her big girl clothes.
Tomorrow is Malou's first day with us and we agreed that we will help her find another job part time and we will keep her on with us part time. We'll see how it goes and I may be able to have a couple hours to myself during the day...what on earth will I do.
Hope everyone is doing well and we look forward to finding our new normal...SOON!
Sasha's presence in our present
Sasha's absence inserts itself into my present continually, memories arriving, playing out, producing high emotions and tears or sometimes just an ache in the heart, then pushed aside by sights or sounds, returning later at a quieter moment.
Saturday night we visited the Big House for the first time in over 6 months to see Kim and Terry and the boys. The garden was full of the sounds of Jonah and Henry playing on the swing and slide and having sword fights and doing all the wonderful kid planning that 4 year olds do. Jonah and Oliver were Sasha's friends, Oliver is two weeks older than Sasha. Oliver was busy fishing trucks out of the blow up pool and I could see Sasha pushing Oliver out of her way and patting the dogs and eating chips and dip. After dinner, I sat outside listening to all the laughter from the kitchen and sunk into the wood easy chair cycling through images of Sasha, then momentarily closing that door and going inside to find Sasha's friend drinking up Dora with his juice as Pam and Mia relax after a feed.
Sunday we came up to Dorset to join Henry, Marcia and Sean. We had a wonderful weekend up here with Sasha last summer and I knew the cottage would be full of memories, walking along the deck, by the firepit, throwing clothes in the den. It was good to hangout, watch movies, make dinner and talk. Marcia remembered Sasha flying around their house at Kate's baby naming and we spoke of ideas for Mia's naming.
Monday was one long sleep in. Mia likes to sleep during the day and is now keeping Pammy up all night with feeds and snacks, falling asleep, then awakening 15 minutes later for more. So Pam is pooped. And she has intense moments of sadness, which we share. And it was good to hear Pam remember how sweet Sasha was and say, this time, even if she knew we only had two years together she wouldnt have changed anything. We continually see-saw between cherishing and missing, smiles and sadness, Sasha's absence and presence.
This morning was overcast so the exposed deck was comfortably cool and I sat watching Sam running around the garden, drinking a morning coffee, hearing the birds chirp, the sounds of neighbour's kids planning the day, a few drops of warm rain. I dreamt about Sasha last night, but like many of my dreams caught between short sleeps, the specifics are lost. I tried to remember it, but the outlines were gone, leaving a comfortable Sasha imprint on my waking up, a little lump in the back of my throat. I read over recent comments: "one day will wake up feeling lighter and able to remember with happiness" and the latest from a nurse at Sick Kids, celebrating that place where "cherub-faced little blonde girls who love ice chips and Jack Johnson lullabies still get to be kids" and I could feel Sasha all around, in all the molecules of air stretching out across the lake and up to the clouds.
Saturday night we visited the Big House for the first time in over 6 months to see Kim and Terry and the boys. The garden was full of the sounds of Jonah and Henry playing on the swing and slide and having sword fights and doing all the wonderful kid planning that 4 year olds do. Jonah and Oliver were Sasha's friends, Oliver is two weeks older than Sasha. Oliver was busy fishing trucks out of the blow up pool and I could see Sasha pushing Oliver out of her way and patting the dogs and eating chips and dip. After dinner, I sat outside listening to all the laughter from the kitchen and sunk into the wood easy chair cycling through images of Sasha, then momentarily closing that door and going inside to find Sasha's friend drinking up Dora with his juice as Pam and Mia relax after a feed.
Sunday we came up to Dorset to join Henry, Marcia and Sean. We had a wonderful weekend up here with Sasha last summer and I knew the cottage would be full of memories, walking along the deck, by the firepit, throwing clothes in the den. It was good to hangout, watch movies, make dinner and talk. Marcia remembered Sasha flying around their house at Kate's baby naming and we spoke of ideas for Mia's naming.
Monday was one long sleep in. Mia likes to sleep during the day and is now keeping Pammy up all night with feeds and snacks, falling asleep, then awakening 15 minutes later for more. So Pam is pooped. And she has intense moments of sadness, which we share. And it was good to hear Pam remember how sweet Sasha was and say, this time, even if she knew we only had two years together she wouldnt have changed anything. We continually see-saw between cherishing and missing, smiles and sadness, Sasha's absence and presence.
This morning was overcast so the exposed deck was comfortably cool and I sat watching Sam running around the garden, drinking a morning coffee, hearing the birds chirp, the sounds of neighbour's kids planning the day, a few drops of warm rain. I dreamt about Sasha last night, but like many of my dreams caught between short sleeps, the specifics are lost. I tried to remember it, but the outlines were gone, leaving a comfortable Sasha imprint on my waking up, a little lump in the back of my throat. I read over recent comments: "one day will wake up feeling lighter and able to remember with happiness" and the latest from a nurse at Sick Kids, celebrating that place where "cherub-faced little blonde girls who love ice chips and Jack Johnson lullabies still get to be kids" and I could feel Sasha all around, in all the molecules of air stretching out across the lake and up to the clouds.
On the verge of tears
I wonder if one day I will wake up and not feel the heaviness in my eyes will be gone. I never thought that this would all be so hard. Sasha is all I think about. Last night we went to Kim and Terry's for dinner. Even though there was lots of ooing and ahhing over Mia, all I could think about was Sasha. Oliver is 2 weeks older than Sasha and I kept on thinking that she should be with us playing with her little friends. There is such a void in my life right now. I keep watching her videos and looking at her pictures and I can't seem to get her voice out of my head. The strongest emotion right now that I feel is that I wish she hadn't gone through so much. I wish December never happened and we could have had her at home doing normal kid things until her body just got tired. Instead I feel that we put her through a battle where there was no reward. I couldn't imagine the discomfort she felt and how scared she was. When we brought her out of CCU, Sasha would wake up screaming. That slowly disappeared and she would wake up like she used to: happy. Mornings were the best time with Sasha. We would lie in bed staring at each other and loving every minute of it. She was such a great morning person. I keep longing for the feeling of having Sasha in my arms and I yearn for her smell.
As Mia is growing, I feel so blessed to have such an easy baby. I remember with Sasha, I was so scared that I couldn't relax. Its like Sasha told Mia to give us a little break. Mia smiles so much in her sleep that I like to think that Sasha is telling her stories. I love my two girls so much.
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