For me, the holidays also bring about countless bad memories that surge up from the past, every year, in spite of myself. For right around this time 9 years ago, Maëlle was stricken with a mysterious illness that specialists struggled to identify: myasthenia gravis. And that was on top of her existing diagnosis of autism.
Everything is still so clear in my mind: hour after hour spent in many emergency rooms in search of answers, fighting to be believed, sleepless nights, a constant gnawing fear in the pit of my stomach, not understanding, the pain of finally learning my child was suffering from a serious illness, realizing that the race against the clock had only just begun…
Sometimes I look back on us in those moments, demoralized, stunned, stupefied even, not understanding what was happening to us; a bit like a flashback in a movie. I would tell our old selves that everything would be all right, that things would begin to calm down.
I remember the Christmas lights reflecting on the snow and lighting the streets. But I don’t seem to see them. Sainte-Justine’s Tree of Lights stands tall and straight, outside the room where Maëlle is hospitalized.
We’re hoping to spend Christmas Eve with our loved ones, to experience, just for a few moments, a semblance of the life we have just lost. I want to believe it. Once more. I need to hope that this is just a bad dream, and that this nightmare isn’t really our reality.
Gripped by an indescribable sadness that drives me to find a way, any way, to save my child, I decide to secretly write a letter to Santa Claus. I only ask for one thing, hoping it’s not too late on December 24th: heal our daughter. The worst thing about it is that I’m completely serious and totally desperate. I want to feel that Christmas magic that resides in all of us, believers or not, as Christmas Eve approaches. In the moment, I knew very well I’d never receive a reply, that my letter and my request were far-fetched, but writing to Santa did me so much good, and felt so liberating.
Recently, Maëlle has been asking us a lot about the existence of Santa Claus and other disillusionments that emerge as she gets older.
That’s when I told her my story. I told her that even when we’re grown up, we still have the right to believe, deep inside, that the magic of Christmas exists, against all odds.
Nine years later, Maëlle is still not cured, but we are light-years beyond the ordeal that we went through then. Like all families, we’re getting ready for the holidays and are finding the time busy. How will we manage to get all our gifts in time, and do all our shopping? We’re already tired just thinking about all the meals we’re going to eat and the people we’ll gather with to celebrate. But celebrate what, exactly?
As far as we’re concerned, we will enjoy each and every one of the precious little moments that come with the holiday frenzy, that make us just feel normal despite our daughter’s illness, an illness that is part and parcel of our everyday lives now. But above all, we will celebrate life, because we understand all too well the meaning of an expression that is often said without much thought, and that we wish to all of you who have stood alongside us for years from both near and far: “To your health!”
*The remarks expressed in this article reflect the opinion solely of the author and should not be considered as representative of the CHU Sainte-Justine Foundation.