How do I reassure a worried 8 year old that her brother is not going to die? It's particularly difficult when it's the same fear at the back of my mind which I'm struggling to contain.
On Tuesday night his big sister came downstairs at 9pm, said she'd had a bad dream in which he had a really bad seizure and died. We spent the next hour and a half talking about it, in the end I had to take her into my bed so we could both get some sleep. A few weeks ago she saw him have a really bad status fit (lasting more than an hour).
"He's not going to die," I tell her. "But that boy in red class died," she says. At his special school they've lost two children in the last two years. I try to explain how that child was much more ill than her brother, but it's not really sinking in.
I don't blame her. When you've seen your little brother carted off to hospital in an ambulance umpteen times, and kids from his school start dying then you're bound to jump to the conclusion that he's next. I know sudden death in epilepsy is rare, and mainly affects adults but I'm scared too. Even though I hide it from her.
I guess this is just the uncertainty we all have to live with. All parents have it to some degree, they never know if their child might get knocked over by a car, or fall out of a tree. But when you've got care plans to remember, medicine to order and give twice a day it's hard to put it to the back of your mind.
Still, today at least we are trying. He's at respite for 6 hours, at our fabulous local disabled children's centre. He has a 1:1 carer, and a nurse on site just in case. He loves it, and we love it. And for a few hours we will try to put our worries aside and just focus on being ourselves.
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