Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.
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.
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