July 2, 2012
He tries to look brave, he tries to be upbeat, but the fact is he’s scared. He’s so scared. But you would never know. He never knows what’s really going to happen to him, and yet he always goes along with whatever we ask him to do.
Today, James had an appointment with the Children’s Cardiologist specialist at the Mater Hospital in Brisbane. We had talked to him about his appointment in the days leading up to it, so he had a good idea of what he was in for. But you can see in his eyes that he doubts you, that he thinks there’s something you’re not telling him. And he’s right. There is so much we haven’t yet told him, so much that we don’t want to tell him. And yet we know the time will come when we have to.
But for today, all we had to tell him was that he was having a photo of his heart, to make sure it was working properly. He didn’t ask why, he didn’t ask what could be wrong with his heart. We simply told him that he needs these checks because of his MD. So he let the nurse put strange stickers attached to wires all over his chest, and he listened intently whilst she told him what the machine was doing. And he talked to her the whole time. He mainly talked lots of gibberish, but I know he was talking because he was nervous.
When it came to the ultrasound, his mouth went into overload. It didn’t stop moving. Not much of what he said made sense, but he didn’t really seem to care. He was talking so he could just take his mind off what has happening around him. It was a dark room, the doctor put some weird gel and ran a funny remote control thingy up and down his chest, and there were student doctors and nurses in the room as well. And James just rambled on with gibberish. And it kept him calm.
His cardiac results were normal, although on the low end, but no sign yet of Cardiomyopathy. That’s good. It means we have another 12 months before we have to worry about this particular appointment again. In the meantime, there will be plenty of appointments with other specialists, but at least the heart one is out of the way. That’s the biggie.
And, in the meantime, there will be plenty more anxiety-ridden gibberish from James as he struggles to cope with his fears. But do you know what? He really does put the rest of us to shame with his courage and acceptance.
It goes without saying, I’m so proud of him.