Cystic Fibrosis · Family · Life · Parenting

Don’t Wanna

I got this in the mail last week. I haven’t opened it. I know what it is, and I’m being a brat.


It’s a nice thick packet. It’s all the paperwork that I need to fill out in advance of Levi’s annual appointment at the cystic fibrosis center. I’ve written about annual appointments before. Short version: We see everybody. It’s long. We get tired.

The center asks us to fill out paperwork before the appointment so that they can have a meeting about Levi before he comes in. This makes sense. If they get the information beforehand, everyone is on the same page. I’ll be filling out forms about his diet, his activity level, his schoolwork. Everything. The one that always makes me giggle and wince is the question about his sexual health. When I get to that, I’ll write HE IS NINE YOU GUYS. It is my fervent prayer that by the time this section is relevant he’ll be doing this himself. There are things a mom doesn’t need to hear too much about.

I’m not in love with paperwork. But it’s not the paperwork that has me in a twist. Not really. It’s not even the long appointment. Snacks and Minecraft get us through. It is, while not a screaming good time, manageable. (It is especially ridiculous to worry about that right now because they send this stuff out three months in advance. The appointment isn’t until July.)

No, the reason I am currently trying to ignore the twitch in my left eye — that has, coincidentally, been around for about the same amount of time as the envelope — is that I just don’t wanna think about it.

This is where the full glory of my denial is displayed before you. It is ridiculous to say that I don’t want to think about it. I am never not thinking about it. Trying to pretend anything else only leads to eye twitches. (Last year, one of my coworkers saw me pressing my eyelid to suppress a twitch. Ah, low magnesium, he said. Nope, I said, high stress. Now if he sees me with a finger on my eye, he walks the other way.)

Many years ago, a friend of mine told me that she’d read that parents of children with special needs lived an average of nine years less than average, all other things being equal. (Her son has Type 1 diabetes.) I believe it. But I don’t think it’s the appointments or the hospital stays or even the fights with insurance companies. I think it’s that you never, ever, ever get to lay it down. For the rest of your life, there is an anxiety app running in the background of your brain. Did he check his insulin at school? When did that nasty cough start? Why haven’t the catheters been delivered yet?

Sometimes, like this week, the anxiety app burns a little more of the processing power. I’ve been trying for days to write about something more cheerful, and this is all that will come out. It’s funny, though. Now that it’s out, I feel like maybe I can face the envelope.

Fine. I will go home and I will open the stupid thing. If you have any really good answers for me for the sexual health question, though, comment away.

3 thoughts on “Don’t Wanna

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