I’ve decided to start with the biggie. Predominantly because as I type this my baby girl is lying asleep next to me after a prolonged seizure and a whacking dose of benzodiazepine.
Aine has seizures. She’s had these since she was about 9 months old. Before the diagnosis of ‘status epilepticus’ we thought we knew about seizures. You drop to the floor and shake and if you happen to be in hospital they give you 5 of diazepam stat! Well, we were a tad misled by Holby City!
She has a few types, just to keep us on our toes. She has focal seizures. These are the most commom. They last about a minute, she goes a bit starey and shouts that her ear hurts and asks you to cover her ears. She has a little sleep. Sometimes she can have eight of these episodes a day. Sometimes that’s it. Sometimes these lead to a generalised seizure where she isn’t quite sure where she is and sometimes that stops and she has a little sleep. Sometimes this leads into a tonic clonic seizure which is the one all seizures on the TV are depicted as. In Aine’s case it’s more of a rhythmic twitch than a shake, and they rarely stop without medication, so this is the point the lifesaving drugs are reached from my handbag and administered. Rarely is there a doctor, I learnt what to do by watching a video on YouTube. Anyway, today was a ‘get the drugs’ episode and so we are in bed, sleeping them off. She wakes periodically to tell me she has a headache. I can only imagine it is like the morning after a very late sprit mixing session. Her head hurts, her speech is slow, her legs don’t work properly, she keeps falling asleep. We are prepared for vomit. There is coca cola, straws, tissues and towels.
I’m listening to Ned downstairs playing his big sister up and doing fake burps. Earlier, after the drugs had worked, obviously not the same ones The Verve referred to, Aine slept. She was blissfully unaware of Ned trying to listen to her chest with a toy stethoscope, operate on her with a toy drill and saw, and lovingly stroking her hair. He picks up his toy phone, speaks quietly into it saying ‘yes doctor, come quickly, Aine is poorly, bye, bye, bye’. He was a tad disappointed that I sent the paramedics away, he wanted to ride in the neenar, but he handled it well. I love that boy!
Things are calmer now. She’s properly awake and she’s no different than she was before. I don’t fear the seizures anymore, I hate them for how they rob periods of her life, but I fear one day she will wake up and not be the same. Seizures are serious. Do me a favour, next time you hear ‘give me 5 of diazepam stat’ think about the reality.