On Tuesday I had to go up to school and have the conversation with the principal and social worker. The medication conversation. Maeve has some very mild asthma, and I've never stored albuterol at school. But this year, something told me that maybe I should. I am more often out and about, Leo and I have things to do, and it made sense to have it there, even if she hasn't used it more than twice in the past year.
And if I was going to fill out the form for albuterol for her well-controlled asthma, I might as well open the door to diazepam. Because while she has only had 1 unprovoked seizure, there is no easy daily flovent kind of medication for her to take to control that. Her seizure in November is coming around to a year anniversary pretty fast, and there has been nothing--and trust me, I didn't sleep for, what, 4 months, after that one, watching her on the video monitor throughout the night just waiting for another. I sleep now, as the trauma fades and she doesn't have another. One day, 2 days, 1 week, 1 month, 6 months seizure free and the chances drop precipitously. We are at the 9 month point right now and I don't think about it every day anymore.
But if she did have a seizure, and it did happen at school, we need to have medication there to stop it. So I filled out the form again and showed the principal and social worker what it was--a valium suppository. I mentioned that it came with a DVD but nobody was really that interested in watching. I kept it light and was done with the conference in 6 or 7 minutes. On the way home I reflected on how shaky I'd been about admitting that we needed to have it around in the first place. How I clung to every reassurance from strangers and relatives about her chances. And how, now, it's not so bad.
It is tough and I get a little worried about the future but the epileptologist is conservative about treatment and says things like "every kid gets one free seizure" and "Maeve will let us know if she needs more treatment." Her tests are clear: EEG, MRI. She doesn't have a brain tumor or a scar on her brain, there is no focal point, they cannot reproduce seizures on command in the EEG lab. These are good good things.
Because I want to live in the unknowing here. I usually want things settled but I want to hold my breath for the next 20 years. Really.
I talked last night with a friend who has been going through her own medical issues and may finally have some answers. We talked about our kids and worries about the future.
"I just don't get why Maeve had to get the asthma and the epilepsy," I lamented, even though she really doesn't have either one to any degree. We're just on the cusp of both and maybe it'll be no further. I thought, though, about how it would actually be nicer if it could have been spread a little thinner in my household. But she shook her head at me.
"Well, I think God gave her the personality strength to handle both."
Sometimes folks say things that strike me as Truth. Capital T. She was right.
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2 comments:
Yes, she was! Maeve the Magnificent, I'd say.
A wonderful reply.
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