Dear Jasmina

I don’t know that I’ve really talked about our handsome godchild much. Most of the people we know, also know David, Jasmina and Sébastien. Should I be asked to write my autobiography someday, Sébastien would be a chapter. (That is assuming I become famous. And it doesn’t look like it will be because of a scandal… Christian and I are much too much in love for that.) In fact, Sébastien could have his own book. It wouldn’t be some soppy story dripping with motherly clichés. Instead, it could be the narration of events that built an extraordinary case. It didn’t just start with a boy born with gastroschesis. It doesn’t end with two successful transplants. Brain hemorrhages won’t be the climax.

There is so much more to Sébastien than his medical record. There are his parents. There is our canadian medical system. There is technology and environment. There is community and faith. There is support and loneliness. There is also suffering. Jasmina is the first to brush it away in order to make room for love, but it is there. It takes on different forms, it’s experienced individually. We’ve been taught to evade pain. It makes us uncomfortable. We look for ways to fix it. Someone else’s pain is our drama. We are spectators in the bullfight, we cringe, turn away, look back, wait for it to stop. Wait to see who will win.

A few years ago, the Manitoba Liver Foundation asked me to give a talk, at a fundraising event. I told Sébastien’s story and made the audience sad. Were I to be asked to do so now, I would try to make them laugh a little too. Stories like Sébastien’s become the commodities leveraged to generate even more future stories, but hopefully with a higher happiness to pain ratio. Thanks to the goodness of benefactors, there are places like SickKids, Ronald McDonald house and the David Foster Foundation. Thanks to the goodness of community there are socials and foundations… But after some time, one story’s novelty runs out. No one’s really to blame for that, we’re all a little fickle. But I wonder if something couldn’t be organized for those lonely long term cases. It is one thing to fundraise money towards a goal that is tangible… only a phone call away, if you’re on a transplant list. But how do you raise money for a black hole of need?

At the end of the month, Sébastien is going in for a serious surgery. A capsule endoscopy revealed anomalies in his intestine. They’ll be taken out, examined for ulcers, or cancer, and cut and re-sewn. Sébastien will be recuperating in intensive care, a mere three weeks from the day his sister is due to arrive. Naturally, we’re saddened by the news and Christian and I re-live a hundred flashbacks… Visits to the hospital, waiting for calls, crossing our fingers during proceedures, wondering what would come next, trying to answer other people’s demands for news. And, we feel quite helpless.

If we had the resources, this is what we’d do. First, we’d find for them, and families like them, a space to live, where the rent would be half the current rate in Toronto. The space would have a rooftop garden, and flowers on the front lawn. There would be a giant kitchen on the main floor, where cooking classes would be organized, and where the leftovers would be distributed to the parents. There would be an endless supply of breakfast muffins, and cranberry-orange scones. There would be free underground parking, and someone would be on hand to provide green transportation to and from SickKids. There would be an air filtration system, lots of natural light and huge closets for storage. Oh, and for pregnant moms, access to a doula, free massages, and occasional pedicures. Then, we’d negotiate a contract from Air Canada for a fixed rate travel plan to and from Winnipeg, so many times a year.

If you could, what would you do?

(October 2006)