Wednesday, April 17, 2013

Sophie, Seizures and Texts

So, I was going to sit here and update you on my continued wheelings and dealings with the acquisition of Sophie's anti-epileptic drug, Onfi. It was going to be titled Drug Mule, Part 347, but to tell you the truth, I don't have it in me. At least not today.

What I do have in me is a screen shot of a typical text that I might receive on any given day from either the aide at Sophie's school or her teacher. Don't get me wrong -- I love both of them, and they both do a kick-ass job of teaching and taking care of their students, including my daughter. What I wanted to convey is probably more my reaction to these texts which is a sort of nonchalance or resignation, and as my finger slides over the words or presses here and here to get a screen shot, I wonder if underneath that seeming lackadaisical manner is a suppressed hysteria.




And Sophie? This is what she looks like, despite the multiple seizures and near-constant agitated head-banging. Perhaps a bit tired, but pretty great despite it all.



And me? I believe you've seen a photo or two of me, but I took this one just a moment ago, and it perfectly captures my mood:









Reader, what did your day bring you?

24 comments:

  1. Yeah. Yeah and yeah. A woman in the grocery store recently overheard me on the phone saying in a very matter of fact tone, "well is she turning blue? Are you giving her oxygen? Ok. She's alright." I hung up and resumed shopping and she headed straight for the liquor aisle.

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    1. It brings me great comfort to know that just a hop, skip and jump away is another cigar-smoking woman who's taking it all in stride.

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  2. Wait a minute! You stole my picture!
    Seriously, babe. I think it's time for another How We Do It Post because I still don't understand how you do it.

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    1. I think there should be a series "How We Don't Do It" for days like these --

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  3. I guess it is like the frog in the kettle. You have lived this life for so long you don't even notice when it boils over. If most people got that message we would go into a total panic.

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  4. OMG, you made me laugh. The world is upside down. I am in your debt.

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  5. Love that picture. Perfect :)

    Another day here in DC, trying my damndest to DO something good. Change healthcare by pushing a pebble up a mountain. The usual. I'm sort of at the bottom of the hill though, today.

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  6. Just here, reading, and man you don't look like I thought!! HA. HA.

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  7. I'm still marveling that you know how to "do" a screen shot. Will you teach me?

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  8. I dunno, she looks a tad tired to me. Poor girl, it must be exhausting.

    and YOU dear, love the dye job!

    My day was fairly uninteresting except that I had a nice dinner out with a friend.

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  9. The resiliency of our kids after seizures is unreal to me. Your lovely lady at the end made me laugh!

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  10. Another day in the life, uh?

    We have got to hang tight, cling actually to the humorous and absurdity of it all, or else, well, or else we will absolutely start resembling that picture.

    Love to Sophie girl. and of course you my friend.

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  11. I looked at that shot of Sophie and I had one thought.
    She in there. She know.

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  12. Two minutes. Ugh. Poor Sophie -- I can't imagine how exhausting that must be for her. (And of course for you and everyone else who loves her.)

    That photo looks like George Burns' mother.

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  13. We have a new nurse working with my Sophie and she actually called me on the phone, during my work, to tell me that Sophie had had a seizure that had lasted 2 minutes (she had never seen Sophie in a full tonic/clonic before). I told her that she needn't call me when they occur...just record them...and quietly I thought, hell, only 2 minutes? They're usually 5 to 7 minutes. That was a mild one. We can get used to almost anything, can't we?

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  14. The resilience of the human spirit... both mother and daughter. I don't know "how you all do it" but I am still listening.

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  15. I'm reading "The Spirit Catches You and You Fall Down" and, for the first time in my life, have some basic understanding of what a person having a seizure actually looks like. I didn't have any comprehension of how shattering they could be. So I wish I was with you, to tear out our hair and beat our chests and ask the heavens why.

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  16. Oh Elizabeth...I wish I could hug you both.

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  17. Sophie looks tired :(

    And you look awesome :)

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  18. You don't want to know about my day...You both look awesome...Hugs from afar...

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  19. I love that you're in a place where she has caretakers you trust enough to handle seizures and let you know. I love that you can let down some of your burden and guard to be carried by others for a while. I am so sorry that this is something that Sophie has to experience, but I'm betting she feels safe and loved in capable hands and that's why she can come home and be okay.

    Love to you all.

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