Most children get through their first few school years without a care in the world. They quickly make new friends and get used to new routines, which tend to vary in complexity from one household to the next. In my family, it was a whole other story.
Not only were there assignments to work on, homework to do, lunches to pack and daycare to plan for, but my parents also had to make sure that I got my two hours of treatment in, that I took all my medication, my nutritional supplements to keep me on track with my growth curve and my antibiotics any time I had an infection or superinfection, and that, when I was older, I cleaned my feeding tube properly.
That might seem like a lot to do in the run of a day, but it’s pretty standard for someone like me who is born with cystic fibrosis.
When I was 10 years old, I loved playing with my Barbies, like other girls my age. I would hold the most extravagant fashion shows imaginable with my little parade of dolls. Only I would do it from the confines of my hospital bed, during my countless stays at Sainte-Justine. When my parents had to leave to go to work, I would make all sorts of arts and crafts, collages and mandalas with the activity coordinator who would come to see me. She was usually the one who made sure I had a portable DVD player and a seemingly infinite collection of movies to choose from, even though, true to form, I always ended up picking the favourites I had seen a hundred times before. It was at Sainte-Justine where I learned the art of being bored and where I developed the imagination I have today, which gets me through many hours spent in doctors’ waiting rooms. Every time I was hospitalized, sometimes for weeks on end, I was fortunate to be cared for by an extraordinary team who made the time go by more quickly, so much so that I almost didn’t want to return home. Reading and playing all day was much more fun than going to school.
Around the age of 14, when my health took a sudden turn for the worse, we headed back to Sainte-Justine. For many months, I would spend every Friday morning on the same examining table, getting the same tests, with the same nurse changing my needles and dressings. I lost any fear I had of blood tests and accepted that every once in a while I had to go on oxygen. Little by little, my fairly normal childhood turned into a screen-worthy adolescence, only not of the High School Musical variety. It was more like Five Feet Apart, without the love story. I said goodbye to more than a few friends, some at home, others a little farther away. I started to worry I’d be next.
My condition got worse and I became a permanent resident of the hospital. The same doctors who had briefed my parents years before on the disease that affected my genes explained the dwindling oxygen levels in my blood, along with what the waiting process was like for a double-lung transplant. I had my own room on the floor I knew so well, with my own private bath, and I could choose whatever I wanted from the cafeteria menu. Then I was moved to another room in the ICU, where I didn’t need a bath anymore: it was a luxury that took too much out of me. My fragile stomach couldn’t digest anything other than a liquid diet pumped into me through a feeding tube, and my lungs needed to be hooked up to a bunch of machines, the names of which were too complicated for a child to remember. For many long weeks, I sincerely believed I was going to die. And at 15, I remember thinking to myself it was too young.
After quite some time, I finally received the miracle call and was given the donor organ that would save my life. I had to be transferred to a hospital for adults because there’s only one clinic in Quebec that does lung transplants. Today, at 22, I still miss the bandages with the teddy bears on them. The ceilings seem awfully drab without all the artwork that should be there to brighten them up. I still have some fabulous nurses, but never again will they watch over me night after night like the ones I had as a young child. And as well-meaning as they are, they’ll never gather me up in their arms to comfort me.
I was very lucky to grow up surrounded by the team at Sainte-Justine. I know there’s a whole tight-knit community behind the scenes supporting them. Your donations contribute to the quality of the environment where I spent much of my youth. If I had any say in the matter, I would have chosen to be treated there forever. These days, I’m doing better, and I know that they are the reason I am the well-rounded adult I am now. If ever the day comes where I can give back to the place that has done so much for me, I would do it without hesitation.
Thank you so much to the whole CF team. I love you, Sainte-Justine, from the bottom of my heart.
Odile Lefrançois
Author and Former CHU Sainte-Justine Patient
