Here We Go

I am having a snit.

It happens every year, around this time. Right around Levi’s birthday, the CF center schedules him for an annual appointment. We spend a good part of the day there together, talking to every person on Levi’s healthcare team. I start getting grouchy a few days in advance.

It’s not the appointment that I dread, even though that would be valid. (Hey! Want to stay in an 8×12 appointment room with an active kindergartener for 3-5 hours, leaving only to use the bathroom? It’s your lucky day, Mom! Be sure to pack snacks. Non-sugary ones.) That, I can pysch myself up for. It’s not the people, either. They are unfailingly kind and patient, and do their best to make it as easy as possible.

Here’s what makes me grouchy, and I am absolutely aware that it’s silly and petty and ridiculous. Almost always, at these appointments, they add a treatment. When he was four, it was a nebulized treatment. When he was five it was high-dose ibuprofen. This year, I am guessing, it will be another nebulized liquid.

None of these are a big deal in themselves. Truly. Whenever we get a new treatment, it’s weird for a week or so while we figure out how to get it folded into the daily routine, and then it’s just a part of what we do. Humans can get used to almost anything, and an additional nebulizer treatment is low on the scale of bad things that must be borne. The ibuprofen is a pill twice a day, which is nothing.

And yet, I am all ticked off. Sometimes I even get mad at the doctor, which is the very definition of irrationality. I’ve spent some time thinking about why. The appointment day is not the most fun you can have with some time off work, and the extra time and changes to the routine are irritating, but it’s really not that bad.

I’m in a snit because of what it means. The physical therapy assessment, the discussion with the respiratory therapist, the new treatment (probably). It’s all a reminder that cystic fibrosis is a progressive disease, and there is no cure. We are not at the hospital to make Levi better. We are there to keep patching up the dam. The patches are better than they used to be, and they last longer, and there are more kinds of them. Really smart people are working on even better ones. Life expectancy for patients with CF is on a steady rise.

None of that changes the fact that behind the dam is a flood that could overwhelm us. Maybe it never will. Maybe the dam will hold for a long, long time. But the flood is still there. Waiting.

Most of the time, I don’t think about it. I do what I have to do, and buy school supplies and think about college funds and assume that Levi will grow up and get a job and get married, and maybe die as an old man, of something else. It’s the only sane way for me to proceed. Once a year, though, this stupid, hateful disease gets right up in my face and MAKES me notice it.

So here I am, noticing it, and thinking about it, and having my snit.

Please pass the carbs.

BTW: I do not intend this to be a sympathy-fest for me, or for Levi. It’s just something I’ve thought about quite a bit and heard, in varying forms, from other parents of children with progressive diseases or long-term disabilities. And I thought it might be good to share, with those people as a little shot of you’re-not-alone, and with other people as a little window into that world.

One thought on “Here We Go

  1. Julie August 12, 2014 at 5:29 pm Reply

    Wow, Carol. Your words stop me in my tracks, even more than usual.

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