Quick recap: Sébastien, our godson, was born in 2002 with gastroschisis, a kind of condition brought on by a defect in the stomac wall which, during a baby’s developpment in utero, allows the intestines to escape and come into contact with the amniotic fluid. In Sébastien’s case, a large part of his intestines were consequently removed following an emergency c-section. Sébastien’s digestion was almost non-existant, and following months of TPN, and countless hospital stays, he finally received a bowel and liver in Toronto. The double transplant and necessary medication that followed harmed his kidneys and caused them to shut down. Surviving a brain hemorrhage and cancer, Sébastien was put back onto the transplant list for a kidney just over two weeks ago, and there you are, all caught up to present. Now, let me just catch my breath a minute.

In Sébastien’s case, it’s easy to gloss over the fact that his life was so often a series of life and death scenarios that had Christian and I at the edge of our seats. I can’t say what it has been like for David and Jasmina. They have constantly surprised us with their endurance. Our stopover in Toronto allowed us to get to know Sébastien as a 5 year old… After following him up the stairs in the rented house on Niagara-on-the-Lake, we’d play a game of him tumbling his favorite stuffed animals down the stairs, and me throwing them back up. He’d tell me all kinds of stories, and if I was inatentive, he’d bring my chin to face him. And if I didn’t say “you’re welcome” he’d repeat “thank-you” until someone noticed the noise. He’s sweet and mature and we couldn’t be happier about each step that brings him closer to home in Winnipeg.

And a little more like John, who finds it in his spare time, between jobs, to climb things…

Have a wonderful weekend!

But the text didn’t come, until that evening. “Finally, it was on a stretch of highway between Brandon and Winnipeg where the setting sun behind us blended grass, trees and sprouting crops into a sea of green under a sky of blue with clouds that looked like paintbrush-strokes of purple that David’s text arrived: ‘We have a baby girl Genevieve 7 lbs 11 born at 8:28 pm.’” We’re so, so happy for them! And, Marie-Hélène can’t wait to meet her new best friend.

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)

But I love walking the campus, as though being in the centre of buildings full of scholars I might get smarter by osmosis. I’m quite silly like that, the kind of romantic poet I can’t stand reading myself.

I joined a bunch of students all sitting on the floor, some in groups talking about all the coffee they’ve been drinking, others in sweats and there walks by a man with white hair in all directions and clothes that seem to have been recycled. As far as stereotypes go, I was right, he was my professor. And that is what is kind of neat about being a distance education student. Besides triple checking the university website for directions and parking, parking, parking, you only see your professor the day of your exam. Suddenly all those marks and comments and notes take physical form.

It so happened the section of literature students were taking an exam at the same time as a group of chemistry students (hence the conversation about caffeine). The chemistry professor’s aide-de-camp was no other than the sweet person I sold our coffee table to. After having watched so many episodes of Lost with Christian, where chance meetings lead to lasting connections, we both expect to end up together on an island somewhere, with that couple.

I just narrowly avoided writing CAPSULE ENDOSCOPY on one of the exam answers… So Jasmina, we were thinking of Sébastien today. As I was finishing a question, and was uncertain of the author, I toyed with the idea of writing a disclaimer to the effect of: “my godson is in the OR this very minute, so please excuse all mistakes…” etc., etc. But, as usual, we’re pretty confident that things will turn out well, or at least average-well. It’s the kind of optimism you’ve taught us, and when things are a little more scary, we throw it right back at you, until the footing is secure again. Miss you always!

*I didn’t know what to name this one. Obviously, I’m not in it for the SEO.

Christmas wishes 09 from Jacinta Palud on Vimeo.