Saturday, October 25, 2014

How Not To Do It



Sophie won't stay still, and when it doesn't make me crazy, it makes me -- crazy. I don't know what to do about anything lately, and every admonition to just breathe, the majority of which come from within, I feel even crazier. Tonight, I fed her dinner in her stroller thinking I'd have more control, but rice and Korean beef went flying and juice dribbled out as she panted and flung her head back and forth and fidgeted and for a moment I wondered if she had Alzheimer's or some sort of brain tumor that was making her do what she's doing, behaving this way, and then I thought that if she had a brain tumor, she'd probably also be vomiting or at least have a headache and then I thought if she had a headache, she'd be in pain, but maybe not because the time her tibia snapped during a seizure, she didn't walk on it, but she didn't cry or feel any pain that we knew. It's all very complicated and it's all absurd and while you might wonder how we do it, I want to say that sometimes we don't do it, and tonight is one of those nights when I wonder who I'd be without this.

19 comments:

  1. Different. But that's all I know.

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  2. 'who'd i'd be without this' is a question most adults have to ask themselves, pointing at events and people of different depths of severity and continuance. and then there are those who could ask 'who'd i'd be if i had HAD this', like the childless who wanted children,or the guy in Amadeus who hated Mozart for having such immense talent thrust into a silly, ridiculous man. i often think it myself these last two years. who would i be, without the constant pain, guilt, hurt and depression of bipolar in my life. i don't understand, but i do understand.

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  3. oh god. I don't know. But I hear you, even so.

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  4. Elizabeth- could it be forced normalization? The theory (as I've understood) is that when a very epileptic brain is suddenly 'calmed' the body can react with almost psychotic-like symptoms. I've wondered at times in the past with Maia too when we get overly good control (???) but fortunately, have not seen anything yet with the CBD- just a little edgy....

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  5. i feel you. if she keeps this up try adding mayo to her meal. calvin has it in every dinner for the very reason you have described. xox

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  6. Sending love. Beautiful photos of Sophie.

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  7. I totally felt this post. Your words spoke to me louder than usual. You know that your daughter is lucky to have a mother like you. But it's difficult, I can only imagine how difficult it can be.

    Thanks. My warmest regards for you and your family.

    Greetings from London.

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  8. This post reminds me of how much I miss being a Special Needs parent. I never in a million gazillion years thought I would ever say that. But Holy Shit, I miss my kids.

    I guess I should write a little, huh?

    Sorry things got so...I don't know what word to use. Real? ;)

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  9. My heart is with you this morning.❤️

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  10. It grinds you down. Sending hugs because there is nothing else I can do.

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  11. i wish i could make your world hold still, if only for a few minutes, elizabeth. i went to a program yesterday about raptor rescue. one bird not yet accustomed to sitting still for people flailed her head around...and flapped her good wing. she could only tolerate the room for a few minutes, and had to go back in her protective box. she was so wild and beautiful.

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  12. Time and circumstances (which I would not begin to compare to yours) have brought me to a place where I believe all things urge us toward ourselves, the becoming thereof. Discomfort and confusion seem to be the main ingredients. Sophie's beauty in your photos, my image of you in The Red Dress and the seeming impossibility of it all, this is what there is. And what Susan said. My heart is very much with you this morning. xo

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  13. How could you not wonder that? Your honesty here is admirable and good.

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  14. it's so hard to fathom who i or anyone might have been, i sometimes imagine a parallel world where all the hard things didn't happen, and see a different me there, imagining what a fine life i have, how happy i am, how carefree. tra la la, it is what it is, but do remember how truly amazing you are.

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  15. You are so amazing and strong.

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  16. Indeed, Ms Moon is right. I'm sorry you have this to contend with and I hope it proves to be transient. (If I read this right, this is more motion and activity than is normally expected from Sophie...?)

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  17. we have experienced these sad frustrating episodes over the years with our son - a lot of anxiety attached to food - in part because some types of food make him feel sick, & he has memories of when same foods were enjoyable as a small child.
    Mayonnaise - i'm intrigued by this but did not find much other than ketogenic diet - why does it help? what type?
    Re: this type of behavior, we found it was because spike activity was present that was painful, not forced normalization. hope Sophie and Calvin feel well again soon! like today!
    best, Jennifer d

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  18. It is crazy-making and I'm so sorry. And the wishing you knew feels like an indictment, but it isn't, it is so much more often the human condition than is knowing, but we still strive for that thing we can't have. It's a good thing we get to start over every day to some extent. I hope today is a better day and you're able to focus on all of the myriad ways in which you DO it instead of the other.

    Love.

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