Almost 400 people gathered two nights ago at Spirale Banquet Hall to raise money for paediatric palliative care. We sat with my parents, several of Sasha's SickKids caregivers, the family we recently met who lost their beautiful boy and Steve Jenkinson, one of Max and B's directors.
There was a huge silent auction of paintings, holidays, sports events and donated services and memorabilia. The Max and Beatrice Wolfe Centre information booth had draft copies of an exciting new book where kids speak to other kids about children dying. There were several game booths including the Putting Green. With the loot bags stuffed with donated product, the open bars and organic watermelon candy scattered around the beautiful flower arrangements on each table there was an almost carnival atmosphere as long time fund raisers chatted with the care workers working the room. The number of donations and the enthusiasm of the bids was amazing.
The evening began with Robyn Posen Young, founder of the Unicorn Dream Dinner, talking about her daughter Samantha's dream and how happy she was the dinner is now in her 5th year. Larry Liebrach, director of the Temmy Latner Centre, spoke about the importance of the work and Ceilidh Russell Eaton, a Max and Beatrice Wolfe Centre counciller, discussed paediatric palliative care and the need to speak openly about death and dying in hospitals and with kids.
The evening went quickly with good banquet food, talks with Steve about his palliative care workshops planned in an Intensive Care Unit and the potential power of an NFB film on his and the Centre's work. He looked over at the klezmer players getting set up and noted that the guy with the glasses was Harry Wolfe, son of Max and Beatrice, and the founder with the family of the fund that began Max and Beatrice Wolfe Centre. He looked trim in his pink shirt and then strode purposefully to the mike and engaged us with a detailed history of klezmer, including the bit about how some of the dances were actually to entertain eastern european royalty by poking fun at Jews. Entertainers through the centures know that self-effacement works.
I went for a walk and bumped into Russell Goldman, Sasha's Max and B doctor at home, and we shared stories and bought a jewelry box for $25 in which lay a simple black plastic necklace with a number for the draw for diamond earings. Then it was in for our 3 minute keynote address before the auction. We had spoken about this chat for months and Mom helped the committee. What would we say, who would say what, could we really say that, did we talk about Sasha's symptoms or the blood that we had to collect in dixie cups? In the end, Mom asked me to speak but stayed close by, close enough to keep her hand on my tuchus, which was good because when I was finished I spun around and almost fell off the podium.
Several people came up afterward to say hi and this was the most special part of the evening including the parents of David Bloom who told me of their son dying at home at 18 surrounded by his friends; their walk in Brampton has raised hundreds of thousands of dollars for brain tumour research. Unbelievable. So the sorbet was served and the auction geared up, starting with the draw for the earings and the MC paused and paused and I focused on my number 55 and the MC said the winner of the earings was 55. We have never won a prize in our lives. Mom was shocked as I casually handed her the little cardboard jewelry box and she stared at me and opened it and somewhat giddily walked up to the podium to a few whispers of 'inside job?'.
I then escaped for some fresh air and had a long chat with Harriet whose 20 year old daughter has lost her colon to colitis and is wasting away. They have spent years going to SickKids for surgery and followup and advice and the emotion doesn't need any encouragement to bubble over. These moms and dads have seen it all, incredible care, mixed in with mistakes and moments of insensitivity as you would expect are inevitable over thousands of encounters.
After most of the lovely folks had left, Robyn Posen Young sat down, having traded her high heels for trainers. Turns out we both went to York Mills Collegiate. Without any drama, and a certain tiredness in the telling, Robyn shared some of the worst moments of her life as Samantha went through test after test and session after session of chemo. These were the days when one nurse, Maria Rugg, single handedly offered palliative care counselling to the entire hospital and struggled with the lack of referrals to palliative care by kids who were dying.
It was a heartfelt evening. We could see that in a few short years a world wide movement has grown to offer every option and choice to those who are dying and to support parents and kids who wish to end the interventions and end their lives with their families and friends at home. And, most importantly, to ask for these services in all the hospitals where there are almost endless opportunities for intervention.
It was a magical evening. Mom told me over dinner tonight that all through our keynote the AV equipment had been acting up and flashing Heather Rivlin's picture of the three of us. The nurses found it a little ghostlike. Then as I looked up to make sure the picture was there and thanked the Centre for making this picture possible, at that moment the photo resolved and hung on.
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