A new year. Last night Mike wished me "a better new year" and then stopped and thought about Sasha and how it could be a better year in an absolute sense; Sasha is not with us. I wish you a good new year. That didnt sound right either. We tried a few others, I wish you a new new year, I wish you a different new year. And we laughed, in sadness and appreciation. Mike challenged me to appreciate the two years we had together, as compared to the loss of a child at birth or in the womb which he knows from experience and I appreciated the straight talk.
Sasha's death is a huge void and working to help those who helped us dont fill that void but they do keep us busy, though we hope we help and are not a distraction.
This new years it will be hard to not remember exactly where we were 365 days earlier, wondering if we would ever hear our child laugh again in 2006. Beside Sasha's bed, talking to her nurse, seeing fireworks through the CCU windows on Elm St looking south over the city, exchanging well wishes with other tired parents hanging on the bed rails over their sedated and possibly muscle relaxed child full of wires and tubes and hissing machiness. And then her oxygen saturations dropped and a resident told he was concerned and wanted to change her tubes. It was over a week since the last extubation attempt failed. We exited and the curtains were drawn. We would wait, hold hands, hope for the best and push off bad thoughts, then scrutinize the doctor's face as they approached and wait for the magic words. His face was serious, tired, as he told us Sasha's o2 levels had stabilized and showed us the cut end of the tubes half filled with clotted tendrils of blood. He then he walked on down the hall of CCU to help another kid and I remember weeping at his quiet mastery and modesty. All over this world doctors reach into bodies and give back breath. We are grateful Sasha did laugh again.
What do you first say to parents of a baby with a serious medical condition? Same as you would to parents of a healthy baby. Mazeltov. My brother in law told me this on an elevator ride to get coffee at Sick Kids as he visited Sasha. I remember him three years ago sitting squeezed beside his wife's bed, his new borne daughter's glass crib and the yellow curtain separating the next family. They were exhausted first parents who had just heard their child had a hole in her heart and suspected Downs Syndrome. They were both processing a lot of unknowns, focused on their daughter. Later, with Sasha, many people could not get beyond the jaundice, wondering if she was sick, tanned, or was maybe adopted. Her pallor varied by the day. Many people got it right. Congratulations. She is so feistey. She is a gift.
Typically I have little time for white lies but it seems to me this is about growing up and being nice while being there. A little mindlessness amidst a lot of mindfulness. Yet you have to watch the mindlessness or it bites you. Here is a conversation that repeats over and over. 'She is so cute. Thanks. Is she your first? No, Mia is our second. Oh, where is your first? Sasha died in June. Oh, I am so sorry, I did not know. That is ok, you couldnt know. I am so sorry. Thank you, it is ok, we are happy to talk about our little peach.' We have exchanges like this when buying kids clothes or standing outside a toy shop. Looking for bigger tops to cover Sasha's 56 inch girth, a very young sales associate asked: Why is your daughter so green? I prefered questions to looks away. Mom could get incensed. For me, even the 'Will she get better?' was better than nothing. The answer was: we didn't know. We talked for a long time about a mother in line with her son at Dairy Queen: she was nudging him to look over at Sasha and was making a face, Pam caught the nudge and the face but what she remembered most was the embarrassment of the young teenager and him nudging her back. Speaking can be heartfelt or mindless and to speak the truth always runs a risk of causing offense but we get better with practise. Speaking, or simply being there in support, is about being a mensch, doing the right thing. Its also about finding your own power. There is nothing more powerful than getting busy with a little messy emotion. Often its about listening, an extended wait that allows someone, if there is time or inclination, to share the truth. Too much small talk can be dangerous to your emotional health. A little small talk with a receptive open ear and heart can go a long way.
These were some of my thoughts after reading Rabbi Landsberg's web log Behind the Veil [in memory of Sasha Bella Stein Blumberg] where she shares newfound new mother emotions and likens web logs to processes of personal revelation. Imagining God's thoughts is an awesome lifelong endeavour. Imagining a bereaved person's thoughts when a loved one slips through a crack in their world may be hard but we can ask the bereaved. And then over the next few days the symbol of the veil expanded to touch on so many areas of life.
It has potent religous and philosophical meaning. Judaism, Islam and Christianity all controversially call for women to veil their heads. The temple was divided into 3 areas: for the public, for the priests, and behind a veil was the holy of holies. Christians believe this veil was broken with their revelation of Jesus of Nazareth as the messiah. As the Rabbi writes, the expression 'behind the veil' attempts to understand how God sees the world. Or to try see God acting behind 'nature'. A bedrock of modern capitalism is the "corporate veil". Within philosophy, there is the "God's eye view" as the answer to the subject-object dilema. The radical "veil of ignorance" from John Rawles holds that a just system requires those making the rules to be ignorant as to their own final status so that outcomes are fair whatever your social position. Where those making decisions know their place then "veil rules" can hide the impact of the decisions. And surely veils are as much about revelation as about deception as the destructive and positive power of states and supra national corporations are veiled with self serving propaganda and mythology. Boston University titled a 2002 conference "Behind the Veil: Reporting on the Drug and Biotech Industry".
I have never experienced more emotion and spiritual wonder than at SickKids Hospital, hoping for a medical miracle, another intervention that would help Sasha more than harm her or threaten her already fragile quality of life. I now see hospitals, like many other institutional spaces where lives are saved and others die, as holy ground. And like all institutions, hospitals have their own institutional veils, foremost to protect patient confidentiality but also in the highly specialised knowledge and language of the doctors and nurses. Formally, SickKids is committed to empowerment of the patient and an evolving ideal set of core principles termed Family Centred Care which we experienced. It is continual work to embed them within the practise of all interactions with patients and families. They appear in For Families > Coming to SickKids and in a more potent and ideal form in Volunteer > Family Advisory Committee section
- families receive the information and support they need throughout the course of their children's treatment;
- each family's beliefs, traditions, and ways of coping are respected;
- families are invited to share their knowledge of their children and their suggestions for their children's care, to ask the question they want and need to ask, and to help identify the goals for their children's care;
- families participate actively in all of their children's care and become full members of the care teams
These empowering guides are missing from the Strategic Directions call to action.
Toward the end of Sasha's life we met with palliative care workers and they pulled aside another veil which challenges the seemingly uncontroversial urge to intervene and hope for a medical miracle. In some cases, hope can be a four letter word. The natural state is the damaged and deceased and compromised body, our surgeons acting as the hands of God is not recent but the tremendous success are less than a 100 years old. We benefit from hearing 'curative' and palliative options throughout. With Sasha, we were clearly told by her cardiac surgeon that he would do his best but that based on the specific circumstances he could not be optimistic and there was no cure. We did not factor sufficiently the state of her liver into that conditional equation. Ultimately the final veil was Sasha's own physiology: she was not only beyond perfect knowledge but also complex enough to challenge multiple care teams at a world class paediatric hospital. Our hope is that we can see some institutional lessons together to strengthen the hospital in tiny but meaningful ways as a tribute to Sasha's memory. And so we humbly explore this veil and the family centred care principles that push aside this veil as every moment with careworkers are moments away from sick children.
Sad today, sitting under the early morning sky, imagining Sasha's face covering the horizon over the houses across the road. No matter how busy we get with sister Mia and little projects it does not yet take away the daily raw moments.
Is this what is mean't by 'time heals'? Knowing the passage of time will dull and flatten the emotional peaks and troughs, I can only relish the rawness, catches in the throat, wet eyes when her voice or hummingbird hands float past me in a memory. I am still working through the finality of our peach's death.
The little waves of depression and anger, eagerness to figure out what else we could have done, these streams of thought come and go, along with moments of disbelief. It amazes me that after all we went through up to her death that she can sail into my mind and I can at times still feel that click, she is gone.
This week I bumped into Maria Rugg of Sick Kids Palliative Care while taking Mia to her paediatrician Dr. Peer. I have had many contacts with Sick Kids of the last 6 months and they help me remember how hard we all worked and how strong she was and how many other kids are being helped and will be helped by Sick Kids.
And Maria asked 'How are you doing?'. It is such a powerful question. And it amazes me how many people miss the power of these few words, perhaps feel unsure or scared as if feeling around a scab that you dont want to dislodge. Or perhaps they feel the time has passed. I assure you the time has never passed.
Friends who I never informed, neighbours on the street who didnt visit, old aquaintances who acknowledge 'You have had a difficult time' but dont mention Sasha's name. I can understand the reluctance. Connect when you are unsure. Dont say too much, you dont even have to say anything, just listen to the answer. The question and open heart says it all.
We love you Sasha.
On the morning of December 14, Sasha was so, so lovely. I was dreading having her fast but she seemed to not be hungry. We all go ready as she played on our bed so sweetly and we made it to the hospital by 6am. As we entered the hospital parking lot, a wave of anxiety rushed to me. Sasha just looked at me and I smiled. As we prepared her for surgery I held her and didn't want to let go. We met with the docs and then they took her away. She would never be the same.
If I could that day back, I would. I wish I was more educated about Alagille Syndrome. I wish she never had the surgery. I wish she didn't have to go through so much, I wish she was still here. I don't believe she's in a better place like so many people say. I am happy she does not have to suffer anymore but the better place is with us. On days like today, I have little tolerance or patience for people who claim they understand when they don't. I think I should stop writing now before I get too bitter.
Peach, I miss you and think of you every moment of the day. I wish you were here with me, daddy and Mia. I love you.
Over the last 6 months we have gained support for several initiatives to help other kids and families and with Michael's incredible generosity taking us to our first $10,000.00 we are inspired to begin our first projects to help other kids as a tribute to Sasha:
- a yearly recognition for nurses or nursing teams on 4D that exemplify family centred care practises, especially where palliative care support needs exist
- encouragement of more routine contact between Cardiology and Palliative Care when young children present multi-organ challenges and an extended surgical plan
- help explore a redeveloped Palliative Care website that supports research, parent and caregiver communication in hospital and at home and grief support for families
- participation in the 2007 Unicorn Ball fund-raiser for The Temmy Latner Centre
- physical supports like a stroller (sasha loved to stroll the halls and it was unfortunately the only way out of her room for 4 months) and possibly high speed internet for the kids playroom (we will also need a computer tied to that)
- an initiative with GI that is yet to be sketched out, possibly helping with efforts to better diagnose and treat kid's portal hypertension: Sasha died of a GI bleed caused by esophageal varices from portal hypertension aggravated by surgical complications
As we learn, share ideas and start the process of formalizing the Fund's activities, our family helps with ideas for events that can perpetuate and grow the fund. Thanks for your interest and support!
In parting here is a quote I saw after exiting a discussion about how to social network the world to fully funded programs; how perfect.
"Hope sees the invisible, feels the intangible and achieves the impossible."
Dr Jay and Fern Bachter have raised 1.8 million for paediatric palliative care and are now meeting to build on their golf event successes to reach more sick kids and their siblings. The Dr. Jay Charitable Foundation website provides a huge amount of information about their quest:
"Adding life to a child's time, not just time to the child's life."
I attended a meeting on Wednesday night where Dr Jay laid out their successes and strategic goals and motivated us to think about how we could build out the network offering palliative care support and grief councelling. An exciting initiative is support for developing a paediatric component for the EPEC (Education in Palliative and End-of-life Care) program that began in the United States and that could be then brought to Canada.
The eight people around the table shared stories about fund raising successess: like a school care-athon for kids visited by politicians and fed by one of Golden Griddle's top execs personally, or social networking like the volunteer Time Raising initiative of The Framework Foundation.
Coincidentally, the following night I bumped into Anil Patel of Framework, Domenic Bortollusi of The Working Group who coded Framework and Paul McGrath, a technologist and journalist with the CBC. We were circling around what must be a common meme in volunteer and tech circles - what is a MySpace equivalent focused on connecting socially to help the sick and differently advantaged, green the world and reconnect communities to do good and have fun at the same time.
Dr Jay emailed me after reading Catherine Dunphy's article about Sasha in the Star and we spoke several times. The lightbulbs go off in their own time, however. The Dr Jay foundation supported the Max and Beatrice Woolf program at Temmy Latner Centre, the program that helped us bring Sasha home approaching 6 months ago. Jay and Fern were in our universe some time before we knew them.
We had 744 days to love Sasha and they were the longest, happiest and saddest days of our lives. It is too soon to be talking to her bones.
Sasha was buried in a new section of the cemetary set aside for Temple Emanu-El members. This Reform shul welcomed our family to Canada and gave 4 brothers learning and adventures. My visits were infrequent during university and then we were married in 2001 by Rabbi Arthur Bielfeld in a beautiful service full of light and music. He turned us slowly to look at each person in the room and recognise them recognizing us on this day of commitment. Sasha reconnects us, her last home was our first community.
Where is Sasha's temple out in the world? She goes with us where ever we go.
Temple Emanu-El's new Rabbi Debra Landsberg is an American who finds our polite disagreements curious and wants to reach out and find all of her congregation's passions. At Yom Kippur she told the story of Bruria who loses her two sons as if losing a valuable left in their care that they must return and it was as if the Rabbi was talking to me directly in the last row. This story resonates strongly with parents of children who die unexpectedly though Sasha's death was not inexplicable.
The loss of any child is an enormity. Their absence is everywhere. Living with a medically fragile is so busy and full of gratitude for each moment that when they leave this energy must continue its journey.
What if there are no pictures or other reminders of those passed? Or say just one lovely presentation in one room? Do we think of them less? Would we think of her when we 'needed' to think of her as opposed to every time we see her on the wall? I just wonder sometimes how our emotions are guided by our enviroment this way; we are all different in how we decorate or record or memorialize and I think we use pictures like props in that struggle to remember or, in some cases, to forget some parts. I expect putting up lots of pictures or thinking of how many pictures there are and where they are is just part of that struggling with memory and in our case the wish to keep her with us as much as possible. As the memory details blur at the edges....
Last night mom comes to bed and says: "I can hear her". Na, na, na, na ... da. That little sweet voice. Sasha's voice comes to Mom in a particularly strong way. I reach out to Sasha and see her in my mind's eye and rehear her but I reconnect with her more through the blog and projects with the hospital and pictures. External things. Mom is with Mia all day and she seems to have more of a personal, internal connection. That's what I always loved about Mom: she is so darn personal.
We miss you so much Sasha.
I got up early this morning and was so happy to see a little hullo that I uploaded a few videos to Google Video. It takes a bit of time because I like to record the info and write up each video. Eventually there will be a bigger collection, sometimes I got started on one day so there is a lot of that day. You can see more Sasha videos by doing a search on Google Video for Sasha Bella Stein-Blumberg . Anyone know how to organize them? I will play with the dates to get them chronological.
Enjoy this absolutely magical moment with a pink sequin scarf.
As caregivers and parents spoke, other parents and children and family members build a small but elaborate house made from sticks and boughs tied together with colourful ribbons and decorated with feathers and flowers. An oval cupped wooden frame with sheep wool was then inserted as the floor.
Into this house we placed small objects in memory of our loved ones. We put in a baby Raggedy that we bought from the 5 Fifty 5 shop at Sick Kids and one of Heather Rivlin's photos with Sasha holding her Raggedy on Mom's lap with the IV in the background.
Then the youngest and the oldest were invited to say a blessing and Henry carried Mia to stand around the house with other children and grandparents.
The tempo of the 2 hour memorial alternated between stories told from 4 microphones and the ever changing group of siblings and parents and grandparents constructing the house.
Stephen Jenkinson introduced the ceremony as a time to re-member which he said was not the opposite of forgetting but of dis-member: we were here to reconnect with people separated from us. Jennifer told us about where they found each of the items used in the house and reminded us that the trees were a short time ago living things, connected to trunks. A duo sang and played violin of a melancholy and undefined music from 'The East'. And a number of doctors shared their special memories.
I feel privelaged to know such a deeply compassionate and spiritual team of care givers and, as the team members expressed over and over, they feel privelaged to care for our dying loved ones and then supporting the families when they grieve.
One woman related how she and her partner were married at home just before Olivia's death and I could feel that same sacredness she mentioned in the care and attention put into getting Sasha home again.
A little girl named Sage who was almost two joined in several times through the evening with loud shrieks of excitement that sounded so like Sasha.
It was very special to see Russell and have him hold Mia and play with her. As we heard from other doctors and nurses and specialists, we could see that the Centre attracted gentle positive people. I met Ceilidh the life specialist from HSC 4 who had worked with Sasha and Mom during the day when I was at work.
I was asked by Dr Chris Newman to speak about how the Center had helped Sasha and when I did speak I ditched my notes and spoke from my heart as I had noticed noone else used notes. My written words are a bit melodramatic, but true nonetheless. It would be nice to be able to write like you speak.
The evening was designed to help us reconnect not only to our loved ones but also to the people who became like family during intensely emotional and intimate moments and who then disappear from our lives.
Packets of sunflower seeds were placed at the door for planting because of their big happy faces.
It was a memorial unlike any other I have witnessed.
This seems the perfect spot to show you the two trees planted in Sasha's memory on Paint Lake:
This year we lost our first joy. Nothing prepared us for the sadness we felt, the decisions we faced and the questions we and our family and friends asked.
Nothing prepared us for the realization that our child was dying and that the dreams and memories would be frozen in time: no more peals of laughter, freezies, walks, kisses. No more milestone bravely crossed. Our hopes were replaced by grief, even as our child was with us.
What can I say to you who helped us grieve? Here are a few words to celebrate and remember your amazing support of our family.
After 5 months at sick kids, after a second surgery resulted in terrible complications, we contemplated a final proceedure that might have temporaily helped sasha or put her in a worse place.
And while we were still absorbing that there were no more medical miracles for us we walked across the street from sick kids to temmy latner.. I will never forget that first conversation with steve jenkinson.
While sasha knew our love we decided to end medical supports and let her tired sick body enjoy peace.
We had only one more wish, to bring her back to her home, where she was born, to her toys and games and dog and cat and walking paths that she knew. Her second birthday was coming up and Pamela was 8 months pregnant.
And our wish came true.
And during our first days we wished her last days to not be a vigil but a celebration. And steve and dr russell goldman visited us and we talked as a family and exhaled all of our 5 months of waiting in the hospital and we breathed together again.
And as friends and family visited and our only child sat in her high chair and went for walks, we wished we would have more time together. And sasha stopped bleeding.
So we awoke to hear birds chirping, and wished our precious child could have more time with us and less with nurses and doctors.
And the nurses of CCAC and dr goldman supported and trained us on iv proceedures and visited us when we needed help and gave us space to be alone together as a family. And whenever we had questions our care givers were just a phone call away.
And we wished her to enjoy each moment and sometimes she did, and sometimes she seemed sad and tired like at her second birthday party.
And when we worried we called Russell and he and the nurses visited and made Sasha comfortable.
And then her breathing slowed and quickened and it was the only day except for in critical care that we did not hear her sweet voice.
When we called Russell around 6.30pm on June 20th he said he thought he knew why. We dressed sasha in a pretty pink party dress. Russell removed her pick line and held a bandage to her wound until it stopped oozing and he kissed her forhead.
And as quietly as you enterred our lives, you were gone, helping other chidren.
Until we needed you in our grief and steve visited to talk with us about the past, the present and the future of our bereavement and connection to our sweet peach.
I cannot imagine not having those final memories of sasha at home. She was so happy to be home.
Thank you to everyone at the Temmy Latner centre and Max and Beatrice Woolf Centre. Thank you, thank you. We wished we met you sooner but we were scared to go home with IVs. You walked with us and removed our fear. You became a part of our family and we miss you. Your team empowered us and graced us with your knowledge, your experience and your kindness. Your nurses and doctors loved our little girl and have our love and deep respect in turn.
I was surprised to hear that your special services are largely funded privately and I ask that we all keep the centre in our thoughts.
To our precious children, we love you forever, for ever and ever. To all the care givers at Max and Beatrice Woolf, you are always in our thoughts, alongside our children. And to the Woolf family and the Dr. Jay Foundation, and all the other special donors, we thank you for your generosity and compassion in helping bring our children home to the place they love.
Here is a video where you can see the fire and focus in her eyes as she takes on a task, her sweet little voice with loud breaths, her curiosity as she look down and around the floor, that moment of perceived risk as she looks out while letting herself fall back from standing to sitting. Taken July 22, 2005 when Sasha was 13 months.
Bill Stahl saw the Toronto Star article on Sasha and we spoke of her in the court yard at Mitz's under the stars. Terry loves modern country like the Jayhawks and Wilco. Times like these I always wish we had more time to dance to hootenanny together.
Once I returned to Sick Kids CCU after hearing the band at the Tranzac Club and when I went in to Sasha's bed I found her golden and luminous under the lights, surrounded and intensively worked on as she crashed. She looked like she had been bathed in gold leaf. 'She looks like she is glowing' was what I said. Pamela was so angry that I had had some beers while my daughter was dying. Three months later Sasha cried when the life specialist played her guitar before we came home.
I used to hum the old hymn We Go Down To The River over and over in CCU and wanted to just dance with our little peach. I had imagined Bill and Tressa and the band playing in the 4D play room or wandering the halls of Sick Kids.
It was good to reconnect with the band and Burly and Terry had a good old time. But half way into the second set I had to go outside as the tears were starting to stream down my face.
So I channelled my energy toward meeting with Sick Kids and learning about foundations to see how we could help or perhaps to mark the lessons Sasha held for us and others. It was a time of questions.
In fact the last few weeks have been so busy I forgot to go to two palliative care events I was looking forward to and was honoured to be included in.
Now my sense of loss and sadness deepens. Before bed I cannot get Sasha out of my mind, some nights it is hard to fall asleep. And yet I do not dream of her. I wonder why. My dreams are wierd, not sure I would want little Sash dealing with the characters in my dreamworld.
The other night I went to bed early and rose around 5am. I love to see the sun rise as I read or write or reflect and enjoy the quiet as the night turns to day. Approaching 8am I laid beside Pamela and enjoyed that special smell of a beautiful woman at rest.
My eye was caught by the bars of blue sky through the slats of the blinds. And then I saw Sasha's arm. She was all there in my mind's eye but my mind chose to bring me her golden arm and then move me to the white scars set off against the yellow flesh of her chest.
And it hit me like never before, I will never know such a girl as Sasha ever again. And I cannot shake that feeling. Perhaps the last four months have been too filled with busyness to really feel.
We cannot shake the feeling that we let her down, that we could have tracked down her bleeding in the summer before the surgery or brought her home earlier after the surgery. Everyone means well when they say we did all we could and that you cannot make a wrong decision out of love. Unfortunately we have to deal with our own regrets in our own time.
For the first time tonight I had just a momentary flash when I imagined what it must have been like for her to be stuck in the hospital for 5 months, too young to ask us why we had left our lovely home with our lovely dog on our lovely street.
I am so happy we came home, but it could have happened months earlier. We were not ready. We were so caught in the day to day. The hope. Ah, that hope.
How many of the doctors and nurses knew how it would end? Many of them would say, You never know.
All those days we waited patiently for rounds to listen to every word and ask every question we could think about. Now we wish we went home earlier on TPN. We were scared to go home.
Two years of Sasha sleeping one, two, maybe three hours at a time and five months at Sick Kids conditioned me deeply. Friends used to say, You must be under such stress. People can adapt to amazing things. Now this conditioning washes away and I can feel more and often it just doesnt feel good at all.
Yet life has an amazing way of swinging. Today we went to see tombstones at Benjamin's. We needed to change Mia's diaper and I pictured hands and eyes raised as we cleaned her bum in the main hall surrounded by tombstones and pictures of graves. But Michael Levitt kindly offered us his table (we lay Mia on a blanket on the floor instead) and it was no biggie.
He was younger than we expected and I was surprised when he told he was born in Scotland. His accent rose as we had spoken and suddenly it hit me he had an accent. So we reminisced about the wonders of the Scottish land.
Then we looked at the stones and talked about the designs and wording it was a light banter. Not heavy at all. And then we taked about would there be some Hebrew words. And thinking of what words I would want to say in Hebrew brought tears to my eyes.
It is almost knee jerk how tradition can serve as a sluice to emotion.
So it goes, alternatively psychically battened down and opening up, and feeling that intimate knowledge that my little girl is gone and no amount of good deeds will give me one more live moment with her.
Today the gates of Pardes Shalom were closed for the last day of Suchot so I climbed the stones by the fountain to vist Sasha's grave.
The small mound of brown unmarked earth was replaced with a small rectangle of fresh turf, the twigs and crayon I had left no where to be seen, a new small black marker listed her name and date of death and the phrase Lives on in our hearts.
I placed a large stone and two small stones with a pink jube jube for me, pamela and mia. The stones were pinky, streaked with quartz from the ground near Dorset.
I knelt and touched the grass, imagined her bones in the earth and looked at the skies and the trees and willed her presence in the air around.
I then watched Mia as Pamela visited. Mia was now awake so Pam fed her while I went back to visit Bruce Stein's grave and add a stone beside the golf balls.
I imagined them together, in spirit, and pictured Sasha sitting on Bruce's lap, laughing together.
This week has been full of memories and connections to Sick Kids. On Thurs I met Mitch and Deena and Haley who lost Melanie last year. Friday we had supper with two of Sasha's nurses. Today we were visited by Nancy and Owen who lost Mitchel earlier this year. Our experiences were all different and yet we are touched and connected by the beautiful sick children that we celebrate and grieve for.
I see Sasha's face every day. It may be triggered by a beautiful sunset or by a toy or the bright propeller spinning in the wind by our stairs or by a sticker lying on a sidewalk. I still wash my hair with a shampoo I used in her room at Sick Kids.
We see Sasha in the differences with Mia who grows fast, sleeps well, feeds with gusto and is content and at peace, the polar opposite of her sister. What they share is the big smile. Mia has started to chortle.
Lately I re-remembered a little moment from last year when Sasha was playing while Pamela was out and I would sneak onto the porch and watch her as she played with her book or at her kitchen. I waited as her attention turned and then she would look for me, crawling or walking her little walker or along the walls in search of me, calling out sounds in her excited voice until I returned to get a big smile.
In June I was exhausted, sad and almost relieved for Sasha. During the funeral and meeting of people for the shiva week I felt a little disassociated. There wasn't time to grieve before Mia arrived. There were many times of intense sadness and awareness, such as at her funeral, but the finality for me of Sasha's death seemed to flare more with the flickering candle burning through the night and through the entire following day and into the part of the next night.
We have finally had a chance to meet with some of Sasha's care givers to whom we turned for advice about Sasha's fund.
In September I met with the paliative care nurses and doctors who helped bring Sasha home and was appreciative of their support of my interest in creating a place to remember the HSC kids who have died and any help we can offer in expanding parents choices as they evaluate surgical options. I was very happy to hear of plans for a palliative care library and website portal where knowledge about choices and resources in the hospital or out at the home can be further explored.
Then we visited Sasha's cardiologist, Dr. Jennifer Russell, as a family with Mia. First we stopped by 4D to show off Mia and enjoy a few moments with the wonderful nurses and OTs.
The meeting with Dr Russell was long awaited. We were lucky that by complete chance Sasha was paired with a doctor who can turn from a lazer like dedication to cardiac research and care to an open and empathetic review of any process or decision throughout Sasha's life or experience at Sick Kids and that she has ample capacity for our awkward jokes. She gave us direction and suggestions for further thought about the projects we wish to work on.
The visit was immensely gratifying. And then, as always, followed by intense sadness. Sasha was sicker than we knew as she struggled to grow and develop and handle her medical supports and interventions and then fight back after post surgical bleeding and liver failure. Our little girl experienced a lot and her care was more challenging than expected. So we have a growing list of ideas and little projects that we wish to know think over and fund raise for. More on that later.
The next day we got a supportive email from the OT who helped Sasha walk. "When I think back to how much she accomplished in terms of motor milestones, not to mention her lovely spirit and social skills, I realize now how truly amazing her achievements were. Knowing now, how "invisibly" sick she must have been, her accomplishments were utterly remarkable! I will always feel blessed for having known Sasha."
Pam was asked at our local children's store on St Clair, Playful Minds, how she was doing and if she minded talking about Sasha. What a great question! We love to talk about Sasha. Sure it is sad sometimes and perhaps some parents dont want to talk about a deceased child, so it is good to ask. We do. For those who know us, we are very happy that you remember with us, when you wish to.
For all the dedicated OTs and PTs, here is Sasha's crab crawl, her wanting to always do a couple things at once, and her fiesty determination to go where she wanted:
Sash, sweet peach, you are in so many our hearts and minds. You inspire us in so many ways, as Granny wrote: "We are thinking of you all today and have extra special thoughts and memories of Sashie. She is a huge inspiration for me whenever anything is tough or requires extra strength I think of her courage and tenacity. Her example motivates me to do what is needed however hard that may be. It is amazing how much she taught us all." Tonight Gramps told us he saw someone he had briefly met and didnt wish to disturb while waiting in line for his coffee - instead this aquaintance came up to him to share how touched she was by your life, her words accompanied by tears.
Kim, one of Sasha's nurses, wrote us today: "I was thinking of you today (like many other days) realizing that it has been 3 months today since Sasha died. Her sweet smile reminds me often to keep a smile on my own face during challenging days. We all miss her on 4D."
For all those who knew and loved you Peach, some happy moments to bring a smile.
First, The Happy Wall Walker. Sasha LOVED to walk hand over hand. Video taken November 18, 2005.
And one in a series of our all time favourites, Sasha doing The Sasha Dance to Stevie Wonder. Her crib dances after her bath were some of our most cherished memories. Video taken November 20, 2005.
And happy moments, amongst sad times: the night of Sasha's second birthday celebrated two weeks after she returned home. Sasha had two positions, sitting and lying down and she could not lift herself from lying to sitting. She was tired and quiet at her party but perked up with her mama after her nap. Bedtimes and waking up were the special times when she was often most perky. June 6, 2006 near midnight.
Sasha loved her toothbrush and watermelon toothpaste. We loved being at home with her on a bed that all three of us could lie on.
Sweet dreams princess.
Here was our Letter To The Editor, which unfortunately did not get published:
"Thank you for celebrating Sasha Bella's short, eventful life and all the dedicated doctors, nurses and specialists at Sick Kids hospital in "Sasha Bella, 2: Palliative Care Fighter". As the article highlights Sasha's final return home we add our thanks to Sick Kids Palliative Care, The Temmy Latner Centre at Mount Sinai Hospital and the Toronto Community Care Access Network who offered our sweet peach paediatric palliative medical, nursing and psycho-social support at home and helped us learn to nurse Sasha to lessen their interventions. We also thank Heather Rivlin and Now I Lay Me Down To Sleep for a palliative care photo session that continues to help us heal and grieve. In your planned giving, please consider supporting paediatric palliative care professionals to expand comfort to more families facing such unexpected and potentially devastating loss."
The article was titled "Sasha Bella, 2: Palliative care fighter: Babies can also be palliative patients, Fund aims to aid parents and staff" and ends with quotes about the need for more palliative supports for nurses and parents. While the heading emphasizes the fund for Sasha without mentioning the palliative care programs and professionals who support those who are dying and help those who are grieving.
Maria Rugg of Sick Kids Palliative Care had the incredibly difficult task of first discussions with two very tired parents who were absolutely not ready to think of their daughter dying. Maria was the gentle hand opening a very scary door. She supports kids and parents through death and bereavement and educates doctors and nurses on the importance of bringing palliative care considerations to the patient or parent as early as possible to allow for informed decisions about surgical plans and quality of life.
Dr Christine Newman works both at Sick Kids Palliative and the Temmy Latner Palliative Care Centre at Mount Sinai Hospital, the only centre currently caring for children dying at home. Chris worked behind the scenes to get us home after we contacted Dr. Larry Librach.
Stephen Jenkinson, the psycho-social director of the Temmy Letner Centre, met us while Sasha was not under his care and for that we are grateful. Steve lead us to our worst fears and helped us face the fact that Sasha was diminished with each daily blood transfusion. He disabused us of selfish hope and then waded into our grief with us, even as Sasha was alive. Steve connects death and life and grieving as constant life forces and believes that 'hope' can remove you from the present during the last months, weeks or hours of your loved one's time. I wish I listened closer and spent more of her final hours by her side rather than adding material to her website. Tim Wilson's GriefWalker is a striking documentary on Stephen's deep exploration of the grief cycle.
Dr. Russell Goldman, Sasha's physician on the Temmy Latner team, was in the picture from the first palliative care family meeting through to the final visit. He proscribed medicines, guided us as we struggled mentally with the last days and was a gentle and calming presence, accessible through a long weekend as he had precious time with his family and late into the evenings. His were the last doctor's hands to touch Sasha as he removed her PICC line. His smile lifted our spirits.
The nurses of Toronto Community Care Access Network, including Marg, Irena and Soritsa (excuse my spelling) who were scheduled to visit us 2-3 times a day and kindly supported us as we took on more duties so they only had to visit a couple times a week. We appreciate their gentleness and humor and graceful support as we worked to minimize their visits.
Palliative Care and Temmy Latner and Toronto Community Care Access Network might say they just did their jobs but they did it sensitively and positively and immeasurably added to Sasha's quality of life in her final days. Sasha stopped bleeding a day or two after we came home and I am convinced that was because she was happier and that the palliative professionials helped her decide to be with us for an extra precious five weeks outside the hospital.
In the article, Sasha is a "palliative care fighter". She was that but she was first and foremost our very sweet first daughter who we were blessed to know and who taught us to treasure and celebrate life.
There are a couple small mis-statements, completely understandable with such a complex history: Sasha did in fact crawl and then started to walk after much focused work in our home by Lisa, her first occupational therapist. Lisa had returned to Sick Kids while Sasha was living at Sick Kids after her second surgery and then she started to visit Sasha at home after our return a couple times a week after a long day of work at Sick Kids - amazing; and the internal bleeding that lead to Sasha's death was not caused by a paucity of bile ducts (the liver condition common to kids with Alagille Syndrome) but rather suspected portal hypertension and bleeding varices that developed as a result of the damaged liver.
We thank Catherine Dunphy of the Toronto Star for her keen interest in Sasha's life and the family experience of pediatric medicine and palliative and bereavement care.
Mike and his partner Tammy described Christal as more willfull than elder kids, if you asked her to do something she might just say no, she didn't feel like it, spoken to in Italian and English, small for her age and acting more grown up than they expect from a child of less than 3 years. Christal connotes "clear and bright" or "anointed" as a follower of a prophet. Mike and Tammy were not there when Christal ran to our porch, they relayed the story from their family. So I asked some questions. Maybe she was excited by the dog. No, she had a dog, she wouldnt have been so excited.
I remembered after H's shiva for his father that we read together some questions from 'The Jewish Book of Why'. He had taken the book to read by his father's body at the hospital morturary since his death on shabbat meant they could not find someone to watch the guard. So he acted as his father's shomer. So as we sat around the table I opened to the section on death and a question discussed was, where should the shiva should be held? The answer was the shiva should be held where the soul would return to view its earthly home.
I remembered their family sitting on the porch playing dominoes or cards or chit chatting or eating, even as our friends arrived for visits and prayers: shiva and the neighbourhood watch. I wondered when Christal ran across to our porch and Mike thought it was after 'the people had gone, though some people still visited' and he was sure we were not home and that Sasha had died. Four or so hours after Sasha's death, as we tried to sleep for the first time in the same bed, Mia told us she was coming and we sped down to Mount Sinai Hospital. We were there almost the minimum time, three days, burning to get home. So for three days the house was empty but for dog and cat. The funeral was 4 days after we returned. The shiva then followed by seven days.
So our lovely Italian neighbours across the street believe Christal ran across the street upon seeing Sasha's spirit when we in hospital with Mia or after the shiva when we were out one day. Or perhaps a wind caught Sasha's shiny propeller that spins beside our walkup to the porch; maybe Christal has pets but not a Sasha propeller. Or perhaps Christal saw one of our animals wiggle the curtains and appear in the big window then disappear back to sleep.
These pictures were taken around March 2005 when Sasha was 9 months and Betsy about 2. We were over at Uncle Kenny and Auntie Cindy and Kenny just suggested Sasha jump in. We had gotten through the winter after Sasha's first heart surgery without any major issues but were still a little paranoid about her catching a cold. So sharing a bath with her cousin was a very special moment.
Children with Alagille Syndrome share characteristic features and one mom wrote that she saw her sister in the smiling picture of Sasha at age 18 months on the first page of the Life section. Reading the story she realised Sasha and her sister shared far more than a facial likeness and so she contacted us.
And so we learned about a little princess from a northern island who passed away after liver surgery having just entered her teen years. She was given the Ojibway name Na-noosh-kaases (Hummingbird) in a ceremony at the Hospital for Sick Kids Critical Care Unit. Her body was bathed in water steeped in cedarwood and then she taken out to the street. And she was named Na-noosh-kaases because, as her sister put it, "Hummingbirds are tiny but fierce fighters."
The connections between the two girls are truly uncanny and Hummingbird gave us a glimpe into what Sasha's life might have been like later. She loved to walk, as if the movement calmed her and would call out in her squeeky voice from her bed to the nurses station asking for the phone, she demanded attention. I remember little Sash racing along the walls of our house, hand over hand, calling out to us whenever she was awake, loving to play with her cellphone.
A hummingbird was painted in CCU in her memory, welcoming those walking along the first corridor through the doors to the isolation rooms and the nurses station.
An excellent fourth reason would be for parents to meet other parents whose kids are going through similar experiences. All that would be needed is a tick box on the privacy form indicating that parents are interested in talking to other parents whose kids have the same conditions or treatment plans. There would be no need for bureauocracy, social workers could look in similar files for a tick when a parent requests to talk to another parent and have another tool to support parents.
It was good to hear of you, sweet Naanooshkaases.
On Lynn's kitchen desk is a pad of Rules to Live By. Today's note reads:
"Pray for the dead and fight like hell for the living".
- Labour activist Mother Jones
On this Labour day I give thanks to the nurses and doctors who work so hard for our kids and their parents and their parents, in the hospitals and at home.
The new memories just stop. It is hard not to want more. I play and replay the time we had. I understand why a person who loses a family would feel pain each time they remember. Memory is bitter and sweet. Very painful at times. So easy to say 'It is always better to be alive'. Imagine losing a whole family to a sudden accident. If I was to multiply our loss by a factor of 2 or 3 and then double it again because when there was no time to say goodbye or because an accident could be avoided, how hard it would be to continue. Sasha was one child. We treasured our time. Still I want more. Still her absence is all around us.
Two months have passed. It took us a long time to visit her grave. It is a small pile of brown earth, there was no marker. We were told a marker would be placed immediately. I placed a crayon on her grave with stones in a small tepee of sticks. Sasha's grave is by the front of the cemetery. Up the hill is Pam's dad's grave, near her is our gentle friend Ruth Koretzsky, near her is Ricky Levine, Sarah's mom, stones on her stone lie nestled with shards of family pottery, close by, in another section, is Alicia Ross, beside her a young boy who died around Sasha's age with a Winnie the Poo on his stone. We looked at the unique gravestones, a campfire and stars for a father who loved the outdoors. Sasha will have a raggedy ann and stars and hearts. We were alone with Marcia, Henry and Sean, so different from when 200 people gathered around on June 25. The cemetery is peaceful, a beautiful spot with lots of trees and sky but I wish it was closer.
We visited 4D on Thursday to introduce Mia. We were welcome, there was lots of love for Mia and us. The ease of being with Mia so contrasts with so many difficult moments with Sasha. We took a basket with two big glass bottles of candy, a baby raggedy and two of Heather's pictures. Alison will ask if the framed picture of us smiling together on our bed can go on the wall beside room 46, Sasha's last room at SickKids. The nurses took turns holding Mia and cooing and I was aware of other parents walking around a happy little group. They hold their hearts in their hands, like we did before. I hope they didn't find our happiness out of place. I remember being in their shoes and appreciating smiles and laughs in the corridors. We passed Dragos as we drove up, he had his baby in a stroller by the bench beside Toronto General Hospital. The cycle of life continues, his first baby, growing through the time we realized we had to say goodbye to Sasha.
Two months have flown by. We feel the aloneness after the crush of people.We have had time to just be with Mia and our memories. Lying awake this morning the image in my head was of Sasha tucked in to bed, raising a hand with a little exclamation Nuuuh, pointing to us to put her blanket by her side. Linda has the CD record of her time in CCU, the many volumes of her other times at HSC still have to be prepared and cost $450. I want the records. Why I am not sure. Sasha toys are all around, I feel great joy when other kids play with them. Some time maybe we will collect them in a nice wooden box, a little time capsule of our peach. Now they are all around. It is hard to write. The blog has helped us get through the last few months and served a purpose as grief and love were shared with family and friends. Pamela doesn't want our lives an open book on the internet while I wish to continue, so we are a little conflicted.
"Okay it was a little eerie that I sat down at the computer thinking of a conversation with Matty in the car this morning about Sasha (the first time since the Shiva that he has asked us about her), opened the blog and saw your message. So, for what it's worth, here's what he said:
From the back seat of the car (in a complete non-sequitor)-
Why did Sasha die? I repeated exactly what we told him the first time [added below]and he repeated it part by part (to process it?)
Can we still say her name? Yes
Can we still think about her? Of course
Can we imagine what she is doing? Of course
That's good 'cause we can't really SEE what she's doing...but our hearts can because hearts have things like telescopes to see very far away.
From the mouths of babes (or 3 year olds). Anyway, I liked the idea and wanted to share that there was a big impact even on little ones that rarely connected in person - she is clearly in his thoughts - even on the way home from the mall this am."
Alisa then recounted to us what they told him the first time:
"We were warned not to say that the reason she died was because she was sick - he gets sick, he goes to Sick Kids etc. We had told him on the way to the birthday party that when she was born there were parts inside her bodythat were broken and that the doctors were trying to fix them (he is only concerned with blood and bones in the body right now so he asked if that is what we meant and we left it at a vague 'yeah something like that') and that is why she might have bandages on her arm and not feel much like playing. So after she died we just sat him down and said that the doctors and auntie Pamand uncle Johnny had tried very hard but they couldn't fix what was broken and that her body had stopped working and that she had died. Did he know what that meant. We explained that we would never be able to see her again and that was making everyone very sad. He asked if we could blow her an imaginary hug and kiss goodbye and so we did. We then had to explain that also since he had been asleep Mia had been born. He had a harder time understanding that the two things were not related andI think that he still does. Especially hard for him was the idea that people would be very sad that Sasha was gone and very happy that Mia was here. He couldn't understand how you could feel more than one emotion at the sametime. We knew that he got it because he apparently told teachers and kids at daycare that day about both things. We tried to revisit it later in the week to check if there were any questions, we had gotten him a book about death, but he wasn't interested - in his case just a short conversation seems to have been all the explanation he wanted."
Thanks Matthew for showing us how you see and empathize.
Thanks Alisa for sharing this with us.
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.
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....
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.
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!
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.
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?
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.
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.