Thursday, February 11, 2016

Cringe Management

Every week, Mimi joyously attends her gymnastic class. Her Growth Hormone treatment has helped her develop muscles and she is loving trying them out at her gym. She is gymnastics-all-the-time and practices all day long. I am psyched she has found something she loves to do.

Parents sit in the balcony during classes, and for us, that means Max and I. And here comes the cringe factor: the steep flight of stairs up to the balcony. This may not seem like a big deal at all. Last week it was though, as Max took off down the stairs to use the bathroom. He sort of hurried/pulled himself up using the railing on his way back up, and then flopped and slumped into his chair. I noticed his pulse coming out of his neck for a bit too long.

I would watch Mimi and then glance over at him to see how he was doing. The other moms are chatting and looking relaxed. Inside I'm having having heart palpitations with worry. The two flights wore him out. And we still had to go to Webelos right after.

So...Mimi loves this place. We may be going here for quite a few years. But how long can we be up in the balcony? If we sit downstairs, we are kind of in the way, and can't see as well.

It's tough. For me this moment represents the opposite ends of the strength spectrum. I have one trying to stand on her hands on the balance beam. I have another one absolutely worn out - from these stairs.

It makes me worry about the future. I wonder if becoming fatigued on the stairs will make his muscles turn to fat. Did they turn to fat a little bit last week? With Bethlem Myopathy, stairs become extremely challenging. How do parents manage? It seems an easy answer to say "can he stay home?"...but we are feeling limited as it is.

So I guess one day we'll be downstairs, positioned in our adaptive location.

I'm mad at those stairs.

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