It was admittedly a comparatively small one–the potent medicine Edgar takes all but guarantees (as much as anything can) that the big seizures will be kept forcibly at bay. But it was a generalized seizure. On his grandparents’ couch on Christmas Day as he was unwrapping one of his new favorite toys.
And for the seconds it was happening, the world stood still.
Though our threshold for seizures has, as Edgar’s neurologist predicted, grown exponentially, there was something about this one infiltrating the sanctity of a six-year-old child’s Christmas.
It was a moment we couldn’t photograph, a memory we might like to forget. Except we can’t.
It’s ours. And it’s his.
And it reminded me that as much as we might like script and plan, we can’t. Whether we’re parents or not, parents of children with special needs or not, so much of this all is beyond our control. The only thing we can control is how we react.
But Edgar’s seizure taught me something else yesterday. All the trappings, all the traditions, all the consistency in this world that we’ve created for our children is at the mercy of Edgar’s epilepsy, and nothing will ever be the same again. Is it better that Edgar–with his diagnosis–dwell in a world of relative predictability. I think so. And is our world better because of him? I know so.
There will never be a day when we won’t have to think about Edgar’s epilepsy. And it was naive of me to think that we might get a day off for Christmas. But I am learning–and lucky me I have such a wise and beautiful teacher.