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.

 

A Late July Update

So no, in regards to my last post, we haven’t found a suitable place of worship just yet. I’m still not ready to give up, but with all the violence and BS happening around the World, I can feel my heart getting hard. I don’t want to be a bitter person. I talked to my dad last week about letting go of grudges and regrets, something I’ve been able to (mostly) do through meditative practices. He relayed he has always had trouble with it. For me, I saw it as intentionally defeating my ego and eliminating wasteful, unproductive habits and beliefs. We all program our brains differently, whether with intent or by accident. I decided I didn’t want to be mad at people who were jerks to me or constantly relive experiences where I failed to rise to the occasion. It surely won’t help me live in the present or be happy, and I think I’ve learned all there was from those experiences, so I discarded that junk like a holey old pair o’ drawers.

My first chapbook, Dravet Syndrome Blues, is written. I’m letting the poems air out and settle for a few days, then I’ll scrutinize them with red pen in hand, and revise. They won’t be too reworked- I want them to be not only GOOD, but an encapsulation of my current influences, experiences, and ability as a writer. I’ve solicited a little feedback, which has been helpful, but I have to just go or I will talk myself out of it. I’m working on layout and design at the moment. Design is not my strong suit, but that’s okay. I haven’t produced a physical product in forever (16 years or so), and I’m excited.

Speaking of books, I finally got around to reading Cormac McCarthy’s “All the pretty horses.” What a fantastic story, and McCarthy is able to write stark, laconic cowboy prose interspersed with flourished, descriptive passages in a way which is totally natural, without an air of contrivance.He’s not trying too hard-he’s just really that good. He is a living master.

Albuquerque is still magical.

I start work next week. I’m looking forward to it, but also not. I have enjoyed having little stress and no routine, but I am a person who very much needs a rigid routine. It will be a good addition to my life.

In addition to routine, I discovered that I also like taking risks and having adventures.  I’m writing this from a hotel room outside Denver. We drove 6.5 hours here so Lindsay and the oldest kid could go see Sufjan Stevens. It wasn’t a bad drive, but prior to realizing that our lives were finite and we were in charge of the character of our lives, I don’t know we would have done this. I want awesome experiences. I don’t hate road trips like I once did, and don’t get tired driving for more than 45 minutes, as growing up on an island is prone to induce.

So things aren’t perfect. I still hold on to old crap sometimes, and sometimes I’m grumpy and snap at the kids. Sometimes I don’t sleep well, and have learned there’s no wisdom in saying “I’ve never gotten sunburn on the tops of my feet”. Still, I think I’m in a good place, literally and figuratively. Seizures, and the threat thereof, are constantly lurking, and I never thought I could feel so dried up by someone else’s condition, but this in my normal. We have abundant moments, and are making stuff happen. I’ll take it.

 

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.