Miss K had her first seizure on the day she was born. Imagine that. Your introduction to the strange new world outside the womb culminates in your brain randomly firing with uncontrollable body jerks and medical teams running. I’m not sure whether she understands just how terrifying those early days were or how much she remembers from that time. I hope she doesn’t remember. Her eyes would stare as her tiny body contracted and shook. It was all so new to me that I didn’t notice all of it. I see through different eyes now.
Looking back through photos there is one that stands out. She is floating in a plastic hospital bath with my hands supporting her and her doting brother watching. Then, it seemed like as normal an activity as we could hope for in an unnatural environment. Now, I see clenched fists and staring, deviated pupils. Epilepsy was at work even in that peaceful moment. Specialists came and went. Medications were trialled and failed. After two months we brought home a baby who had a tube down her nose to feed and who seized every day.
Visitors would remark how cute she looked moving her legs like she was riding a bike. Seizure. Ambos would say she seems alright now she just laughing. Seizure. Missy would stare seemingly at the trees and the world going by. Seizure. Urinary tract infections became a nasty and frequent occurrence bringing with them massive seizures that lasted up to two hours and meant a ride with lights flashing and hospital sleepovers. The lead up to puberty was awful. Our poor poppet who could now both understand and remember had a horrid time and hormones flying and brain waves sizzling.
I touch wood, cross fingers and toes and invoke all possible other parental superstitious rituals when I say she has settled into wellness. She still has epilepsy with an EEG reading of her own funky version of normal and ten daily doses of anti-epileptics but she’s ok. It’s a tough gig but you can have epilepsy and live life. And that’s something our girl does so well. A purple heart is awarded for injury in the face of battle. I hope it is appropriate to say I think our girl has earned her own purple heart.