A very special shiva evening

This evening the house again overflowed and the rains brought us inside where visitors ringed the lounge, den and kitchen. We were so happy to number among our visitors Neal, a family friend of Pamela's, whose residency at Sick Kids brought him to our rooms mornings and sometimes evenings to follow the progress or lack of progress with Sasha's fistula. His gentleness, friendly smile and warmth were great comforts during a difficult time in March. We were also thrilled to see nurses Val, Kim and Laura. Laura, another nurse who often stopped Sasha in the hall for a chat, and Lori and Lisa (Sasha's wonderful OTs) joined us for prayers.

And then the surprise of our week was a visit by Dr. Jennifer Russell, Sasha's cardiologist, and Christine, one of Cardiology's clinical leads. Sasha's baby room, now Mia's room, overflowed with the laughter of 10 wonderful woman. With Pammy holding Mia, Lynn massaging her feet and the Dr, nurses and OTs laughing at recollections of Mia's birth I felt a tremendous warmth toward Sick Kids.

I then chatted with Christine and she helped me see beyond where my mind has twirled over the last few weeks. As Sasha's treatment moved from fixes to palliative care I began to see transplants and extreme surgical interventions as palliative, buying a little time, but always requiring more work, tremendous medical support and often additional transplants. I have often thought, What if we had known what we knew at the end, would we have still started Sasha on the same course? I asked Dr. Russell, Could you have told us Sasha would like not have more than a very few years with us? No, she said, we just dont know, they said Sasha had three days to live and she lived 5 weeks. I have been wondering if we could have had better information on the risks Sasha faced. And finally I have come to realise that it was never about how long Sasha would be with us. Pamela, Dr. Russell and my concern was always on the quality of the life. So whether it was 2 years or 5 or 15 or 30 years is less the issue than Sasha's enjoyment of her time. And I realise we had enough information and that detailed readings or discussions with other parents on possible poor outcomes with us living at hospital would not have changed the course of our experience. We were filled with hope, sometimes an innocent and naive hope, and that hope was dashed after the second surgery. And although we always said Sasha had been so unlucky with complications after surgery we were also very lucky in that we are certain she experienced a range of discomforts but not chronic or acute pain.

It was a powerful evening, accompanied by driving rain and thunder, among friends. The presence of so many of Sasha's hospital team tonight in Sasha's first room, with the big pink wood letters of her name on the wall, meeting Mia, was cathartic. As Sasha's Sick Kids care givers continue to give, beyond our wildest expectations, tonight left me more at peace with Sasha's passing than at any time since her funeral and better able to focus on our beautiful memories of Sasha and on ways we can give back.

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