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?
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24 comments:

  1. Maggie WorldApril 17, 2013 at 5:04 PM

    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. ElizabethApril 17, 2013 at 9:06 PM

      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.

      Delete
  2. MichaelApril 17, 2013 at 5:06 PM

    Sympathy for my neighbor.

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  3. Ms. MoonApril 17, 2013 at 5:15 PM

    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. ElizabethApril 17, 2013 at 9:08 PM

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

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  4. BirdieApril 17, 2013 at 5:22 PM

    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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  5. Denise Emanuel ClemenApril 17, 2013 at 5:53 PM

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

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  6. SJApril 17, 2013 at 6:29 PM

    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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  7. Maggie MayApril 17, 2013 at 7:19 PM

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

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  8. Carrie Wilson LinkApril 17, 2013 at 8:29 PM

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

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  9. TaradharmaApril 17, 2013 at 9:22 PM

    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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  10. DeanaApril 17, 2013 at 9:31 PM

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

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  11. HeatherApril 17, 2013 at 9:45 PM

    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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  12. TheresaApril 17, 2013 at 11:01 PM

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

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  13. Steve ReedApril 17, 2013 at 11:14 PM

    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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  14. ClaireApril 18, 2013 at 3:29 AM

    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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  15. colleenApril 18, 2013 at 8:30 AM

    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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  16. Vesuvius At HomeApril 18, 2013 at 10:25 AM

    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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  17. AndreaApril 18, 2013 at 11:04 AM

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

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  18. UnknownApril 18, 2013 at 12:15 PM

    Sophie looks tired :(

    And you look awesome :)

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  19. eApril 18, 2013 at 6:26 PM

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

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  20. LeslieApril 19, 2013 at 10:22 AM

    precious girl...

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  21. karioApril 19, 2013 at 12:15 PM

    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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