July 17, 2012
I miss my little boy.
I miss the boy he was, and I miss the boy he could be.
I hate that Duchenne is taking away all that I love, all that he loves, and all that most others take for granted.
I hate that the daily dose of steroids he has to take, to keep him walking for as long as possible, are increasing his weight and, in a sad twist of irony, making it more difficult for him to walk. And the less he walks, the less calories he burns, and the more his weight increases.
He loves his food, and he eats healthy, nutritious meals. We rarely allow soft drinks or sodas (except for parties or if we go out to dinner), we refuse to buy them fast food (except on road trips), and his lunchbox is filled with fruit and a sandwich. He eats anything we put on his plate at nighttime, usually meat with vegetables. And yet his weight is increasing.
There’s a reason for that though – he can’t exercise or burn off his energy the way other kids do. He can’t walk very far, he gets around school on his scooter, he rarely plays with his mates because he can’t keep up with them. He is unable to swim as it’s currently too cold, and even bike riding is difficult. His afternoons are spent on either his iPad or xBox because, quite simply, what else can he do? And that makes me so sad for him.
I hate that I have to get him dressed and undressed, clean his teeth for him, and lift him up onto his chair at the kitchen bench. I hate that I have to lower him down to sit on the floor, and then help him back up again. And I have to carry him up the stairs, and he bumps down them on his backside like a toddler. I hate that I can’t take the kids shopping to a supermarket as I have to push him around in his chair, and the trolley is too heavy for the others to push. And it is a hard reality to come to terms with when we look at modifying our van so we can accommodate his power chair, as that will be in the near future.
I also miss the sweet-natured, happy little boy he used to be. Steroids and Duchenne have taken that away as well. He still smiles, but we know that his smile is very similar to mine – we both wear it to let the world think we’re okay, but inside we’re sobbing and crying out for help. He doesn’t know much, except that he has MD and it makes his muscles weak. He knows he has to go in a wheelchair, but he still thinks that his legs will work once he’s grown up. I’ve told him he will always need the chair, but he refuses to believe me. I guess that’s his defence mechanism, with a little bit of denial thrown in for good measure.
He lashes out, he screams, he bangs his head, he freaks if his routine is broken. He can’t hold a proper conversation with anyone, unless it’s on something that he has an obsession with (Harry Potter and Dinosaurs). And that’s Duchenne’s fault, as it affects his brain as well as his muscles. You see, whilst he most likely doesn’t have “true” Autism, the lack of Dystrophin in his brain certainly causes him to present with ASD tendencies. And sometimes I don’t know what’s worse – the Duchenne or the irrational & difficult behaviour/actions that come with ASD.
He was never ever like this until around 2-3 years ago. Up until then, he was a pretty normal little boy. We thought he was going to be one of the “lucky ones”, a Duchenne child without the behavioural problems associated with such a crappy disease. But it wasn’t to be. No, the powers that be had to throw another fucking spanner in the works and mess up his brain as well. Like he didn’t have enough to handle. Now, when he acts out, he doesn’t even understand why he does it. He reacts without thinking, and then looks shocked when he gets into trouble.
Don’t get me wrong – whilst it’s hard on our family, it’s even harder on him. He is losing the ability to do things that he could previously do, which is why he gets so excited about still getting two feet off the ground when he jumps. But I “hate” it because it makes him sad, and I hate seeing him sad. He deserves to be happy, and he deserves to do and see anything that he sets his heart on. But we all know that is not to be the case, and I think that deep down he knows that too.
I miss my little boy. I miss him so much. I love the little boy that I now have more than he will ever know, and I will do anything in the world for him, but I wish I could do more to bring back that little boy he once was.
I miss him. I want him back. And knowing that will never happen is killing me as much as Duchenne is killing him.