At 8 years and 8 months, James has been through more than most kids his age.
With regular checkups with specialists, a handful of daily drugs, weekly therapies, and 2 surgeries under his belt, plus the fact he’s slowly losing the ability to walk, he’s proved himself to be an amazingly resilient little boy. And he does most of it without complaint. Oh sure, he has his days when he cries and says he doesn’t want to go through with it anymore, but then we remind him how everything we put him through is helping to keep him walking for as long as possible, and he stops complaining and just gets on with it. Just like that. He knows how important the drugs and therapies and appointments are. He’s known ever since he was 2.
In addition to all of the above, he has a strict regime of massages and stretches on his legs. Every. Single. Day. For one whole hour. For an hour, every afternoon, he lies on either the sofa or a bed and Tiffany, his very own respite carer, massages his lower legs, trying to break up the fibrous tissue that is accumulating and soften his rock hard calf muscles. And this massage is finished off with some pretty intensive stretching, to keep a good range of motion in his ankles and hamstrings and hip flexors. He happily lays there, playing on his iPad, without a single complaint, chatting away to Tiffany and anyone else that comes near.
We know that following this regime will not stop the disease, that the disease will take away his ability to walk and move no matter what (and eventually it will take his life). But if we can help to postpone it by even a few months or an extra year, then that will make all of this effort worthwhile.
I sometimes find myself frustrated about situations that inconvenience me, or doing something over and over again, and I often vent my frustrations to those around me. But here is a child, a child who isn’t even 9 and has to go through so much already, and he doesn’t complain. He just smiles. Smiles and plays.
Really, he puts so many of us to shame.