How We Do It: Part LI

photo by Jenni Werndorf

Today was not a good day for Sophie. She had numerous seizures, was both tired and wired, had clammy hands and feet and appeared confused. I imagine it was the full moon coupled with -- well -- whatever. She had an off day, a bad day, one of many in her life. Here's the thing. I was hanging out in her room at some point in the afternoon and felt the tweak of irritation when I saw her have another tiny seizure -- these are tiny jerks and pauses, and they happened all day, on and off, off and on. I felt a tweak of irritation -- not at her, really, but at the situation. The monotony of it. The goddamn constancy of it. A tweak, though. Just a tweak and not the surge, the seizing of the blood in the veins, the fury, the despair. I was mindful of that tweak, what it felt like, and it felt small, like a flame on a short match. Its size -- brief, small -- took me by surprise. I felt, instead, grateful to be at home with this girl, to be subservient to her needs, her instability and vagaries. I felt lit up for a moment, but with light, not heat.