It must seem like I write a lot about James. In fact, I KNOW I write a lot about James. But considering every decision we make, every holiday we take, and every move we’ve made has been based on his needs, then it’s inevitable that he will feature a lot in my writing.
When James turned 4, we bought him a bicycle. We had to search high and low for the perfect bicycle as it was essential that it was as lightweight as possible. And so, a few hundred dollars later, James had his birthday present. He’d never been able to ride a bike – he had trouble pushing the pedals round and round, but we were hoping that this new bike would change all that.
That first time he hopped on his bike, and managed to push the pedals, was one of the happiest days of his life. And ours. The look of pure joy that appeared on his face, as he rode along the East Coast Park in Singapore, was one of the most beautiful sights I have ever witnessed. The breeze was blowing in his face, he was overtaking other kids, and he just cruised past the rest of the world. It was a freedom he had never experienced before. I was so happy for him.
James is turning 8 in May, and he still has that bike. It is one of his most prized possessions. He loves it. With a mesh basket on the front, he can put his drink bottle in it so he won’t get thirsty on his travels. But his travels are becoming much shorter. Whereas only 12 months ago he could ride up and down our quiet cul-de-sac for a good hour or so, these days he’s lucky to manage 10 minutes. His legs get so tired, and his arms tighten up and become quite painful. And yet it still brings him so much joy. He loves to ride down the path near our new home, with the wind in his face, and riding so fast that Luke has to race to keep up with him. Yes, his bike has training wheels. With Duchenne (and its treatment) affecting both his weight and his balance, he is unable to ride a bike without them. And James is okay with that. He’d rather ride with trainers than not ride at all. Even if it is only for 5-10 minutes.
Some would say that the time spent preparing for his ride isn’t worth the actual time spent on the bike. James has to get his shoes on, which takes forever, find his helmet, get his drink bottle, check his shoes again, go to the bathroom, put his helmet on, and put his drink bottle in the basket. On some days, this could take 20 minutes alone, and the ride is over within half that time. However, apart from his love of riding, there is now an even more important reason for riding. . . .
James wants to lose weight.
James has been called fat and lazy by many ignorant people, adults and children alike. They see him in his buggy, they see him as a clumsy walker who constantly falls down. Of course, we know the truth, the reasons behind his physical appearance and difficulties. But most people don’t. Every morning and every night, James steps on the scales to weigh himself. Before doing so, he sucks his tummy in as much as he can in the hope that it will make all the difference to the number that will appear on the scales. In his mind, if he loses weight his legs will get better and he will be normal. Sob. As a parent, what do you say to that sort of comment? How can I break the news to him that losing weight won’t “fix” his muscles? All I can tell him is that he will find getting around a little bit easier if he loses a few kilos, which it will.
And that’s all he needs to know at this stage. In the meantime, I hope he gets to ride a little bit more, before he no longer needs that beautiful bike.