I hate being repetitive. Thematic. I tell my students, Vary your writing. Don’t get stuck on one topic. Don’t be afraid to explore.
Yet here I am, stuck on one topic. Predictable. Boring. Thematic. Blogging about seizures again. Still, epilepsy in its nature is not predictable and maybe that’s what makes it so hard. That a child can be just fine one second, playing with a ridiculously huge collection of Thomas trains and in the blink of eye that same child can fall and start seizing in the middle of his trains.
Because of course, this was my evening last night. The same as other evenings. Did you know that his seizures almost always happen at the exact same time of night? We could set a clock to them. But different, because it’d been so long since he’d had a true grand mal seizure that those little seeds of hope starting to sprout.
Last night was more painful than other nights because Luke was the one who found Tommy seizing. Shane and I were in the kitchen. Luke was on the couch with his Leapster, Tommy on the floor with his trains. A four year old can be often dramatic, yelling and hollering like his hair is on fire when really he only wants to get my attention to ask me why clouds are white. But last night, as he came running into the kitchen, shouting my name, I knew. The fear in his voice was so real, so tangible, so much more than I ever wanted to hear in my four year old’s voice. He drug me into the living room and I had that horrible moment that always happens during seizures, where my brain forgets itself for just a split second and I feel like I’m above my body and I think, What is happening? Why is his face like that? Why are his arms twisted and his lips blue? And then I zoom back into my body, scoop him up, and talk to him. Tell Shane to look at the clock. Comfort Luke. Praise Luke. Calm myself internally. Hold my shaking child, exhale when the tremors stop, when he sighs, his eyes flutter open, then close and he drifts into that post-seizure state of unconscious, pale-faced sleep.
He’s so verbal these days, so aware of what words mean and how to answer questions. Last night I held him and said, Were you scared?
He nodded his head two times. Yes. Yes, mama.
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