July 9, 2012
My son can jump.
Not very high, mind you, but he can jump nonetheless. And every time he does, my heart swells with pride and breaks with utter sadness.
When James was 2 years old, he couldn’t jump at all. He tried so hard, and he used to get both excited and frustrated when his 1 year old sister could jump. But he couldn’t. He used to do this funny little “one foot off the ground, the other firmly planted” kind of jump.
When the doctors first told us he had Duchenne, they also told us (amongst other things) that he would most likely never jump. Many Duchenne boys never manage to get both feet off the ground, and they continue doing the little “one footed jump” until they don’t even have the strength to do that. That first night after they told us, we cried. And we cried for the next few months. Not because he wouldn’t be able to jump, but because he wouldn’t be able to do so many things that we all take for granted. He wouldn’t be able to climb steps, or go rock climbing, or even hiking. He wouldn’t be able to run into the surf, or drive a car, or snow ski. He wouldn’t be able to run a cross-country, or play rugby, or run up sand dunes. And, to top it all off, he wouldn’t be able to jump. It all sounds so silly, so trivial to cry over, but unless it’s your child who’s faced with a future like this, you have no idea what a devastating blow this can be.
We made the decision, shortly after his diagnosis, to put him on the dreaded daily steroids in the hope that we would see a temporary increase in strength and ability. Basically, we chose to fill his body with poison in the perhaps-vain hope that he would be able to experience some extra strength to walk upstairs and run and maybe even jump. But even with side effects such as terrible weight gain, reduced bone density, stomach ulcers, and cataracts, it was an easy choice to make.
And it all boils down to this – James will lose the ability to do EVERYTHING physical. EVERYTHING. And that’s if his heart doesn’t give out beforehand. So it makes perfect sense to help him experience as much as he can, whilst he can. Putting him on Deflazacort was a no-brainer.
Within weeks of starting on his “roids” he was climbing out of his cot, and up over his changing table. He was climbing stairs, and he was running. Okay, his run was a little bit strange by elite athlete standards, but it was most definitely a (kind of) run.
And then came the day I will never forget. I was sitting on the lounge in our Singapore apartment, and the door was open out to the balcony. James and Charlyse were running in and out of the apartment onto the balcony, having fun as little kids do. I was watching them, laughing at them giggling away. And then he did it. . . . he jumped. It wasn’t a big jump, and if I wasn’t watching I would have missed it completely, but it was most definitely a jump. I watched him as a look of total surprise, a look of complete disbelief, crossed his face. He was so shocked, and it was like he had to jump again just to make sure he’d really experienced what he thought he had. And there it was, even higher – another jump.
I can tell you now, I have never screamed or cheered so loud with delight and disbelief in my life. That moment was pure magic. And I was lucky enough to witness it. I knew, I was totally aware, how amazing this moment was. My boy had jumped. And he got not just one foot, but TWO feet off the ground and in the air at the same time. He’d jumped. I was so happy for him. And I was so sad as well. Because I knew that one day in the near future, he would lose the ability to get two feet off the ground. And then eventually he’d lose the ability to get one foot off the ground.
But here we are today, almost 6 years later, and he can still jump. His jumps aren’t as high or as frequent, but he can still do them. And the joy, the look of genuine surprise on his face, is still apparent every single time he gets in the air. Almost as if it’s his first time jumping.
Please Duchenne, please give him (and me) just a little bit longer to experience this simple joy. Don’t take it away from him just yet. Please?