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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Two years

Facebook reminded me it’s the 2nd anniversary of meeting that a-hole monster, Dravet Syndrome. Here are some of my posts from that day:

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Imma be me

I wrote in a notebook: “I want to be the Alton Brown of jiu jitsu.” I didn’t do anything with it, and stumbled across it later. I tapped my pencil on it (I like to do my initial draft of things freehand) and thought abut the phrase. It’s no longer what I want. Not at all. If I were to write an aspirational mission statement this moment, it would be: “I want to be the best version of myself I can.”

Tragedies and stressors can be useful, in that when things are settling down, you have an opportunity to look at how you’re living your life. You decide if you want to reassemble it with all the same pieces, or get rid of some crap and make or find new pieces.

I wrote a long post on Friday. So much of the text was tied to that day, and was to be published immediately. I wrote abut how it was my service anniversary, and how I had very different but very involved situations as a supervisor on the 18th. Then The Little One had multiple seizures, a helicopter ride, and a bad hospital stay to deal with. My contented insights no longer felt appropriate.

Plus, it was anchored around Agent Orange’s weird-but-good cover of Metallica’s “Seek and destroy.”

Still, tragedies aside, I am content, for the first time in a long time. I accept my circumstances and decisions, and the path they’ve illuminated for me. I accept I will not have many moments of comfort, that I will have to remain fluid, that aside from God and gravity, there is very little in this world upon which I can depend. My contentedness and acceptance of turmoil and uncertainty will serve as a darned serviceable makeshift solid thing, a piece of driftwood upon which to cling. I will accept all of this, and I will be myself.

And also, Imma be me because the Alton Brown of jiu jitsu is basically Batman. I can’t handle that at this moment. But when that baby singsongs “Dad’s home!” as I walk through the door, stumbleruns to me, and hugs my knees, I am an invincible superhero.