Thursday, October 16, 2014

Around whom I spin



I've been worried about Sophie lately. Maybe the word lately is superfluous. I have worried about Sophie and worry about Sophie perhaps all the time, but lately I've been worried about Sophie. She has some strange behaviors that are subtly different than any she's had before. She rotates her right ankle a lot, almost collapses it onto its side. She contracts her right arm a lot, too, and flings out her right leg. She seems uncomfortable or maybe not. I don't really know what she's feeling. She has less seizures of course, because of the Charlotte's Web, but we're still waiting to get the higher ratio oil that really stops them. Until then, we've compromised and are not weaning any more Onfi. She goes on liquid fasts periodically now and just refuses to drink. I don't know what that's all about, so I basically force it into her -- take the little plastic thing that makes it a sippee cup out of the lid and tilt it into her mouth. She is very resistant to a lot of things and only seems happy and content when she's in her room, alone. She lies on her bed or sits cross-legged on the floor and fiddles with beads and baby toys. Don't tell me that this is what teenagers do, because it's not. I think, at best, that her brain is not so preoccupied with seizures so she's more aware of her surroundings, and the sensory input might be almost too much for her. She might be blocking it out, stilling the chaos. Again, I have no idea. When she arches her back and refuses to sit in a chair, I wonder if she's in pain or whether she's developing behavior problems. I hate this kind of worrying. I've said it before. It's the little things, sometimes, that do me in, make me crazy. If I ever do run away to Bora Bora, it won't be because of Sophie's epilepsy or the fact that she will never be normal. It will be something simple that breaks me, a link on my twenty year old tale that like a Christmas light on a string just goes out and brings down the whole strand.

Today, though, it was a little thing that made Bora Bora just another island in the South Pacific. Sophie's teacher sent me that photo, with this text:

Nice time for Sophie during the earthquake drill. Nice, soft turf and soil. She got to walk without physical support in the sunshine for a while. Of course I was right there. But I couldn't resist the urge to snap a happy picture of her in a rare moment of liberation.

Stuff like that makes me want to stick around. I am going to face it. She is the person around whom I spin.

23 comments:

  1. Sophie walking without support, in the sunshine and it was a beautiful day, as though fall might really arrive, does seem - and not used in a small way - enough, enough for right now. xo

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  2. Normal is normal for all of us and when things aren't normal within the confines of our own normality, we worry.
    But my god, she looks beautiful in that picture.

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  3. I love how just a few words and a photo can be a salve on that worry.

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  4. I looked at that picture and the first word that popped into my brain was "beautiful". So...

    I think you need a margarita. Do you want to meet up? Maybe a happy hour on Friday? LMK.

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  5. A rare moment of liberation. It makes me wonder what it's like to be Sophie. Inside all that is her. You must wonder that too. xoxo

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  6. Ms. Moon said it perfectly.
    And Sophie is lovely to behold. What a dear-hearted teacher she has, to take and send that photo to you.

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  7. I love that Sophie got some freedom and that her teacher valued that and shared it with you. And I love Sophie's green top.

    And I am sorry you don't get to know what is going on inside her head.

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  8. How good of that teacher to give Sophie a little freedom in the sunshine---and, to let you see her in her walk about. Lovely Sophie!

    Best,
    Bonnie

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  9. Beautiful picture! I can't imagine how hard it must be to try to figure out what's going on in her head, how she's feeling. If she were feeling REALLY bad, though, really uncomfortable, I'm sure you would know. Don't you think? Perhaps she's just adjusting to new feelings, new levels of awareness -- as you said.

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  10. Sophie radiates grace and regality in this as in all the other photos of her you've posted. She and you are fortunate to have such an intelligent and sensitive teacher.
    C. had one of that caliber for a while but that was many moons ago; I can only dream of that sort now. We're currently afflicted with the lazy, indifferent ones or the well-intentioned but clueless ones. For instance: the other day an aide who's in the latter category told me that the class had been taught something cerebral about a local holiday and asked me whether C. had discussed that with me??
    Your interpretations of Sophie's new behaviors sound so sensible. I doubt any neurologist would come up with any more convincing.

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  11. She is beautiful. What a sweet teacher she has.

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  12. The theory that her brain is now not preoccupied makes so much sense, and of course you must wonder as you watch and log the all of it, but oh what a beautiful being to spin around. What a fortunate being, too, to have the ever attentive, wise, and curious you to spin around her.

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  13. Well if I had to bet, I'd bet on your instincts. But when it comes to your gorgeous girl, I'm sure you'd rather not have to bet at all.

    We are all lucky to be in your orbit.

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  14. Thanks for sharing - she looks so happy out in the sunshine - those little moments are what keep us going as moms I think.

    I agree with the others that you are probably right about some of her new behaviors - it is nice that she has a place she can go to just be (her room)without all of the stress of the world intruding.

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  15. yes, we live parallel lives. i am sorry for your worry. you are not alone. i love you.

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  16. the little things can make or break us sometimes. we deal with the big things, right? so good that Sophie has a teacher with enthusiasm and awareness, something to be glad for, "the attitude of gratitude" can overtake weariness at times. She does look lovely, and she can feel safe and free, there it is in the picture.

    wishing you many blessings

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  17. thank you for sharing with us this happy picture. i hope there will be more, and more 'moments of liberation'.

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  18. thank you for sharing with us this happy picture. i hope there will be more, and more 'moments of liberation'.

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  19. I wouldn't begin to tell you that's what teenagers do, or anything else, for that matter.

    See you in Bora Bora.

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  20. We spin around you and Sophie too. And one day I will join you in Bora Bora.

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  22. I know this photo made you happy. You amaze me always, always, always.

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