DAY 7: LIFESAVER

life-saver

As a caretaker of  a special needs child, one of the hallmarks of managing my 3-year-old’s severe epilepsy is routinely saving her life. My wife does the bulk of it; coordinating the endless array of medical, therapy, and educational assessment appointments, wrestling with insurance and doctors who sometimes just don’t get it.

Yesterday I had to do the lifesaving thing thing, administering rescue medication after several attempts failed to stop the seizure. It’s trial and error, and there’s a hierarchy of actions, the most severe being to call 911, which we did a few weeks ago. We recognize she’s having a seizure, get her to a safe place, and so on. Yesterday’s seizure was ugly and powerful, and afterwards, as usual, she went into a deep but troubled sleep. She’s physically and mentally exhausted from the convusling. It was about 6pm, and she typically goes to bed at 7, but we knew this meant a sleepless night.

It largely was, and became the kind of night where my wife and I tried to sleep while we let Paloma watch Barney on my macbook in our bed at 2am, to keep her from slapping us and starting conversations.

I woke up stiff and tired, but I didn’t lose my kid. When I first became a routine lifesaver, I didn’t think I was built for it, but knew I didn’t have a choice. Now it seems like a speedbump, and I’ll eat a sleepless night here and there.

 

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2 thoughts on “DAY 7: LIFESAVER

  1. There was something about the tone of this post that grabbed me — in recognition, of course, but also the sort of terrified confidence of it — we lead the weirdest, most extraordinary lives.

    Liked by 1 person

    1. We do. We watched “Speechless” last night (of course), and I thought of sharing the “bulletproof” scene. We’re okay, but our okay is still atypical and awful. The internet has helped this journey tremendously, so we don’t have to just be the town weirdos- but then again, we’d have stiff competition for the title in Albuquerque.

      Like

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