I took B into have breakfast at the school Friday morning (I'm too sick to go shopping) and she had a seizure while eating her cereal, so I brought her home.
She has now missed most of the last three weeks of school. This is why I can't have a job, even though I want one, until we find meds that work. It's really depressing. Sometimes it feels like her disabilities are the whole framework of our lives. I can't move anywhere far from the hospital and doctors. I can't even take her camping more than a half hour away from a hospital. My sister went to the states this weekend, something that I can't do with B unless she's insured, really, really insured, and what company would touch us with a ten-foot pole? Every week I have to discuss and fill out forms and book and make appointments. I have to track the meds, her reactions to the meds, and make sure I'm within a few minutes of the school everyday.
And then I talk about her, and I feel like, "Is this the only thing going in my life? In her life?" And it's not, but it does overshadow and colour everything we do. I don't want her life to be shaped and ordered by disability, and yet now it's all I see. I am terribly worried about where to send her for high school. I've been after the school based team for two years now, to present me with options, and NOTHING. Not one choice have they presented, which really worries me. Each one will have to be seen, interviewed, and will have an application process. I need time to do that.
you are doing so well but you can't see it and yes, at times it is the only thing, it is the core, like it or not.
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