You weren’t even 48 hours old. The sun was just starting to peek through the window of our hospital room. Your mom and I were watching you sleep in your bassinet. We were both exhausted, but overjoyed. A simple but powerful feeling of contentment. We had been waiting for you for so long, little guy.
We listened to you breathe, in and out. It was peaceful. Despite the hustle and bustle of the early morning hospital routine, our room was the epitome of calm. That’s when they walked in. There were three of them. I knew right away that our lives would be turned upside down.
A few hours earlier, in the middle of the night, your mother was the one I watched as she slept. Her almond-shaped eyes were shut. The light from an outside lamppost caressed her cheek. With her hands pressed against her face, she looked like an angel. It was as if nothing could ever trouble her. As I gazed at both of you, my heart was awash with love.
You were in my arms. You had been whimpering in the little receptacle that was your first bed. I picked you up and cuddled up with you in my cot. The nurse had just finished gently scolding me for spoiling you… We had just plucked you from your mother’s womb. Your father’s embrace was another matter.
I was so happy. There we were, the three of us, in the semi-darkness, and it was bliss. As you snuggled close to me, I realized I was doing precisely what I had been told not to do a few months earlier: I was starting to hope.
You’ll figure out soon enough that I’m not a religious man, but I’ll tell you a secret that is hard for me to admit: that night, I prayed. In the dark, I reached out to a being I don’t believe in. I even asked for help from your long-departed grandfather, who left us before I really got to know him. The truth is, I didn’t want to leave anything to chance.
I thought I had received my quota of uppercuts in life. I had the right to hope. You would be saved. My son would be able to do what I never could with my dad. You’d play hockey. We’d go mountain-climbing together in some of the most remote areas of the planet.
The diagnosis hit us like a ton of bricks: the odds didn’t turn out in our favour.
Eight months before you were born, we were informed your mother carried a hereditary gene. We knew the disorder was a possibility, but we decided to take a leap of faith. Our love was boundless. Nothing would dare come up against it. The diagnosis hit us like a ton of bricks: the odds didn’t turn out in our favour.
They explained our child would have a one in four chance of being born with hemophilia. One in two in the case of a boy. When we were given the option of terminating the pregnancy for preventive reasons, your mother and I shot them a withering look. I actually think we were on the verge of yelling at them to back off.
So we were told to prepare ourselves. We had to assume that the baby growing inside your mother’s womb was a little boy with hemophilia. We had to staunch any hope we had in order to avoid being disappointed. And that’s what we did. Or at least, that’s what we tried to do.
We listened, quietly, as the doctor confirmed what we feared: you chose the wrong chromosome.
When they walked into the room, I clenched my teeth. A nurse and a resident followed behind the same doctor who had counselled us a few months earlier. There were three of them… Before they uttered a single word, I knew you’d never be a hockey player.
I remember taking Sabrina’s hand. We listened, quietly, as the doctor confirmed what we feared: you chose the wrong chromosome. Your blood wouldn’t clot without outside help. We would have to be careful with you. We would have to learn how to give you needles. Pretty much every sport would be off the table. Tears streamed down our faces. We had been asked to do the impossible: but you can never tell a parent to stop hoping.
The shock hit us four weeks later when they took you in for your first operation. Nothing serious, but for a hemophiliac, everything is more complicated.
When we got to the ER, I realized that the disorder was slowly creeping into our lives. A nurse drew some blood from your heel. When you wouldn’t stop bleeding, I could see that she hadn’t been told about your condition.
Four hours later, I was still clutching your little foot in a blood-drenched towel. Your type of hemophilia is extremely rare. There are only 250 cases like yours in Canada. None of the caregivers were familiar with the injection protocol for your factor.
You didn’t seem any worse for wear though. It was two o’clock in the morning. Speechless, I took a closer look at your wound. It was tiny, practically invisible. A millimetre if that. But it refused to heal. As I watched the drops of blood fall slowly, one by one, to the floor, I realized just how fragile your body was, no matter how strong your life force. I tried hard not to show it, but I was paralyzed with fear.
One of the nurses eventually found the protocol and gave you the injection you needed. A few seconds later, it stopped.
We have started prophylaxis over the past few weeks. Basically, that means we inject you with coagulation factors once a week as a preventive treatment. Your mother and I are learning how to do the injections ourselves.
Since that night when I felt sorry for myself for daring to dream, you have made me a better man, my son. You’re the most precious thing in my world. The glint in your eye, your fearlessness and that sweet little face of yours make me the proudest dad on this planet.
You may not play hockey or soccer with your friends when you’re older. I imagine there will be a time when I’ll have to comfort you and try to find the right words to explain that we all have limits to cope with, that life isn’t always fair. Perhaps I’ll even manage to persuade you to try swimming, piano, reading or art instead.
I won’t lie: your playground is smaller than other kids’, but there are still lots of other boundaries for you to push. And no matter what, I’ll be there to prop up your ambitions.
When I see you with your little helmet on, there’s nothing remotely resembling pity in my eyes. I think you look like a boxer. A little boy with drive and determination, ready to tackle life head on.
You’re already a champ, little guy, and I will always be the guy who is right there in your corner.
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.
