Just before we went away, when I had the Snail, she had a home day due to some seizures, which was sad, and, frankly, kinda inconvenient, I had appointments! I also loved that I had her completely ready for school before her first one. My sleep deprivation would have preferred a civilised just-before-waking bedtime seizure so we could all stay in bed. And yes, when you have a kid that seizes a lot, there are the thoughts you have. You spend time hoping to avoid some seizures, like the at-the-shop, or in-the-car, or just-before-going-out seizures, in favour of the sleep-in, staying-home-anyway seizures. I mean, if you have to have seizures at all, that is. We're getting an average of one home day in a school week from seizures at the moment, so I just cross my fingers that it's a day Lolly and I don't have much on. This is one of the unseen costs to families of this kind of disability, and if I was to request respite, it would be the dream of someone who could come at very short notice on days when I have competing needs, and a seizing girl, to help care for her.
Anyhoo, a lovely friend came over to keep me company, and when Snail was awake, she was loving to see "a BABY!", a BABY! who had no fear of the Hands of Crushing. I love this shot of them both! Thanks, a BABY!, and thanks, V, for keeping us company on a bit of a stressful day.
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| A BABY! |
1 comment:
I know EXACTLY what you're talking about. It's why, basically, I can't go out and get a job outside my home. And it IS so weird to hope for a seizure at a "more opportune" time -- like there is such a thing. Sadly, there is, though.
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