You did not have 48 hours. The sun’s rays timidly pierced the window of our hospital room. Your mom and I watched you sleep in your pram. We were both tired, but we were happy. A simple and immense happiness at the same time. We waited for you for so long my little end.
We listened to your breathing. The coming and going of your breath was soothing. Despite the sound of the hospital waking up, there was calm in the room. That’s when they came in. They were three. I knew on the spot that our lives had just tipped over.
A few hours earlier, in the middle of the night, it was your mother that I watched as I slept. His almond eyes were closed. The light from an outside lamppost stroked his cheek. She seemed out of reach, far from any hassle. My heart filled with love, I was watching you both.
You were in my arms. As you were chiting in your little tray that served you as a bed, I had brought you near me on my bunk. The nurse had just scolded me nicely. I gave you bad habits … You had just torn from your mom’s belly, you were still not going to take off your father’s arms.
I was so happy. We were all in the dark and I was fully aware of my happiness. I squeezed you gently and that’s when I realized I was doing what I had been banned months ago: I was hoping.
You’ll soon realize that your dad is not a believer, but I’m going to tell you a secret that is very hard for me to admit. That night, I prayed. In the dark, I implored an entity that I do not believe. I even invoked the spirit of your grandfather who went too fast so that I could really know him. The truth is, I did not want to take a chance.
I told myself that I had received my quota of uppercuts in life. I had the right to hope. No, you would not be affected by the disease. My son was going to be able to do what I could not do with mine. You went to play hockey. We would go mountain together in the most remote corners of the planet.
Eight months before you were born, we were told that your mother had a hereditary gene. We knew it was possible, but we decided to trust life. Our love was infinite, nothing would dare to stand before him. The diagnosis fell like a slap: no, we were not untouchable.
We were told that our child had a one in four chance of being hemophiliac. A chance on two, if he decided to enter with a tap. When we were asked to stop the pregnancy preemptively, your mother and I frowned. I even think we almost screamed.
The doctor told us that we had to prepare. We had to pretend that the little one who was pushing quietly in your mom’s womb was de facto a little hemophiliac boy. We had to kill hope so as not to be disappointed. That’s what we did. At least, that’s what we tried to do.
When they entered our room, I gritted my teeth. A nurse and a resident accompanied the doctor who had wisely advised us a few months earlier. They were three … Even before a single word was spoken, I knew you would not play hockey.
I remember taking Sabrina’s hand. We listened silently to the doctor telling us what we were dreading: you had chosen the wrong chromosome. Your blood would not coagulate without outside intervention. We would have to be careful, we would have to learn to give you intravenous injections, almost all sports would be prohibited. Tears ran down our cheeks. We had been asked for the impossible: we can not prevent parents from hoping.
The shock to the disease came four weeks later, when you had to undergo surgery. Nothing serious … But for a small hemophiliac, everything becomes more complicated.
When I arrived at the emergency room, I realized that the disease had sneaked into our lives. A nurse took a sample at your heel. When she was surprised to see your blood flowing constantly, I realized that she had not been told your condition.
Four hours later, I would still hold your little foot in a towel completely soaked in blood. Your type of hemophilia is extremely rare. There are only 250 cases like yours in Canada. None of the caregivers knew the injection protocol for your factor.
You did not seem to suffer. It was two o’clock in the morning. Without a voice, I watched your wound. Insignificant … So small, one millimeter at most, yet nothing to do, she refused to heal. Watching the drops of blood fall slowly, one by one on the floor, I realized how fragile you were, despite the strength of your vitality. I tried not to show it, but I was paralyzed by fear.
A nurse eventually found the protocol. He made you a sting. In a few seconds, everything was over.
We started prophylaxis for a few months. Basically, as a preventive measure, you inject coagulation factors once a week. Your mother and I are learning to inject ourselves. Finding the vein of a baby is not so easy, but we are getting there.
Since that night when I wanted to have dared to hope, you made me a better man my son. You are what I have most precious. Your laughing eyes, your rebellious airs and your little mouth of love make me the most proud dad of this planet. You come from a love that may not be perfect, but that is great. You have the best of moms, grandparents who love you endlessly, a godfather and a godmother who will be there for you, whatever happens, and a tribe of friends ready to welcome you among them.
Later, you may not be able to play hockey or soccer with your friends. I dread the moment when I will have to console you, try to find the words to explain to you that we must all do with our own limits, that life is not always right. Maybe I can convince you to learn to love swimming, piano, reading or the arts?
I will not lie to you: your playground is smaller than those of others, but there are many other limits that you can push back. In any case, I will do everything to give you the ambition.
You have now fourteen months my Edgar. When I look at you with your little helmet on your head, well it’s really not the pity I feel for you. On the contrary, you look like a boxer … A little guy, full of will, ready to face life.
You are already my champion and I will always be your corner man my son.