by Mindy

I was going to write a lighthearted post about burping because Sam has had a lot of air in his belly lately and I’m not sure why but he’s always hated burping. Like seriously hated it. He’d be eating, swallowing tons of air in the process, and the bubbles could be heard sloshing around in his stomach. They’d rise up and he would tense and resist letting them go. Then he would either refuse to eat any more or continue but puke. And the daughter of a friend of mine, one day at a playgroup years ago, saw Sam struggling and decided she needed to invent a burping machine called the Burpinator, which she did out of sticks and rocks. But it wasn’t real of course. This was before he had his g-tube which, we were delighted to find out, doubles as a burping machine. So every hour when I vent all the air in Sam’s belly through his tube I think of my friend’s daughter and the Burpinator.

But that’s not what this post is about. Had it been I would have drawn it out longer and made it more entertaining. I don’t know why. A blog about a child dying doesn’t have to be entertaining. Sometimes I guess I just get tired of the heaviness.

Like today.

Sam’s having a rough day. I don’t actually know for sure because he can’t tell me. Something’s different though. He’s not just sleeping peacefully or lying quietly enjoying the music or the sounds of the house. His sleep today is fitful and he calls out a lot. And he shakes. It’s a kind of shaking, a trembling, that impels me to lay my arms over him to what? Calm him? Comfort him? Myself? Try to suppress this outward sign of progressing illness?

I remember when Sam was little and we’d take him to a new doctor who would point out all the various ways Sam’s body was not functioning properly. These things didn’t need to be pointed out; we were aware of all the ways Sam was different than a typical child. But the doctor had to make the assessment and ensure we were all on the same page. None of the information was new but I’d walk out of those appointments feeling so down, like “wow, my kid is really messed up.” A new yet familiar gloom hanging over the future.

But nothing had changed. We had accepted and learned to live with all of Sam’s dysfunctions or, as I prefer, quirks. So why the renewed sense of despair?

Because we adapt. Even to difficult realities we can adapt. We accept the new situation eventually and can move on with our daily life. The heaviness is still there but we get used to carrying it, like an emotional muscle that gets stronger the more we take on and it’s easy to forget it’s there until somebody points it out.

And what I’ve noticed today is that I’m becoming accustomed to Sam’s nausea and increased sleepiness. They don’t sink me so far down as when they first appeared. But something else was added today, the agitation and increased trembling. And this is how it’s going to be as Sam gets sicker: there will be new symptoms showing up, forcing us daily to confront the inevitable.