Yahrzeit candles and conversations

Traditionally Jews light candles a year after a death but we lit a candle for Sasha along with Bruce last sunday on the night of Yom Kippur. It was hard to first celebrate the new year and then a week later contemplate and atone for sins against other people and against the spiritual. Though I am an athiest Jew (strange as that sounds), seeing the two candles beside Sasha's pictures and then on the kitchen table was a gut kick when I had one of those discombobulated moments of disbelief about an event that recently happened and of which there can be no doubt. A moment when the eyes glaze over and the reflection is non rational, just a wave of emotion.

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: