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The Quiet Times

I feel like I should knock on some wood or sacrifice a chicken even for saying this out loud, but Schuyler hasn’t had a seizure (to our knowledge) in about six months.

We celebrate the quiet times, knowing that they can be fleeting.

For kids with polymicrogyria, seizures represent probably the worst of the many things that can go wrong. Schuyler’s condition affects her speech and her cognitive development the most apparently, but like anyone with a neurological condition like hers, it’s the possibility of seizures that hold the most potential for surprises.

For kids like Schuyler, surprises are almost never the fun kind.

Schuyler is monitored periodically by a neurologist, and he remains extremely optimistic about her future. The seizures he identified as being what she is most likely having, complex partial seizures, are similar to the absence seizures she seemed to be having a few years before. During these seizures, she fades, subtly, in such a way that you could be watching her and very well might not be aware that there’s anything happening. In Schuyler’s case, the seizure is followed by a period of disorientation; bad ones can put her off for several hours.

Schuyler’s neurologist believes that her seizures may have reached their pinnacle last year, as she transitioned into the hormonal nightmare of puberty. He convinced us to step back, to let go of some of our worry, and to let things take their course. Her last EEG didn’t catch a seizure, but he wasn’t surprised. Unless they occur during sleep (which they don’t for her, although there’s unexplained but apparently harmless electrical activity taking place every night), complex partial seizures can be very difficult to catch with an EEG. Fortunately for Schuyler, her neuro has no desire to hook her up to the wires again unless she shows signs of more serious seizures like grand mal.

His advice to us has been more therapeutic than medical. “Let her be herself,” he says. For us, the idea of Schuyler one day having a big seizure is oppressive. If we let it, that fear could drive every choice we make, every minute of every day for her. For her doctor, it’s just another possibility, one that will be dealt with if it comes. Let her be herself. Let her live like a little girl with friends and independence and the beginnings of a life, and it’s good advice, even if it can be very difficult to take.

It’s easier to do that during the quiet times. It’s easier to allow the worry to subside a little, or at least to let it step aside so the ones about Schuyler’s socialization and school and The Future can have some stage time. The one concept that remains the most difficult to make peace with is the idea that bad stuff can still happen, and that it will happen regardless of our anxiety. The anxiety doesn’t help, even though it kind of feels as if it does sometimes. The anxiety stands in Schuyler’s way if we let it.

The storms are either coming, or they’re not. We’ve had to learn to live our lives as if they might never come again, even as we stand vigilant in case they do. As parents, I have to confess, that’s surprisingly difficult to do. As is usually the case, Schuyler shows us how.


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  1. March 11, 2013 |