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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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.

 

A ripple in a wall

libro

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El impacto de un libro AKA El castillo, Jorge Méndez Blake, 2007

I saw pictures of this installation by Mexican artist Jorge Mendez Blake, and it got me thinking about the power of ideas, about memes, about the transmission of culture. It reminded me ideas, their propagation and sharing, can impact our world, not just as gentle eddies in a pond, but in disrupting brick walls of institution, custom, and identity.

I haven’t mentioned it much on this blog, because at this point most of my readers are people I know in real life, and are already up on it. Yesterday, the paper ran a story on us.  Today is pivotal for medical marijuana legislation in Utah. My wife has been going to the Capitol, lobbying, meeting with representatives and senators, and engaging the media. I’m proud of the work she’s done, and I wish I were more involved.

Well, today is also my first job interview as I transition out of the military.

I’m anxious; and it’s mostly in a good way. It’s an energizing fire. This moment is a culmination of 3a.m. conversations, dreams, thinking out loud in hospital rooms, early morning driving to work long before the Sun rises anxieties, of pros and cons lists, of planning, of wishes, of phone calls, and emails. All of those things have the potential  to cause physical ripples and eddies and displaced bricks today.

Mazel Tov.

 

 

 

 

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.

Careful

I accidentally overdosed the baby with one of her meds. She’s fine, it just had a sedative effect, but I feel awful.

Getting medicine ready requires concentration, with this one I was supposed to grind up a tablet and mix it with 5ml of water, then administer 4ml of that suspension orally via syringe. I was distracted, putting another kid on time out, so I mixed the powder with 4ml water, and gave all 4ml, which means it was 250mg instead of 200mg.

Hypervigilance-having to be on point all the time is exhausting. Sleeping lightly because seizure monitors go off all night when baby is turning over or reaching for her pacifier is exhausting. Not being able to have a sitter, because normal people without medical experience can’t watch Paloma, is exhausting.

I’m not complaining, simply stating facts. This is my adventure, and I embrace it. Some days are tougher than others, and those tough days can be linked together like a horrid train. But, today, as Paloma takes an early nap as a result of being drugged, I can draw a breath. I can be in this moment, resolve to  never let it happen again, and celebrate the good.

An old friend visited with their wonderful baby, who I got to wrestle with and love on. It was a nice visit, and great to still feel connected despite not seeing each other for 8 years. It was odd but satisfying to see they had grown not only into being fully an adult, but a wife and mother.

Paloma just finished her wean off phenobarbital, which is an awful drug, sometimess taken recreationally for its psychoactive properties. We started the wean in June. At first, we were going too aggressive, at the advice of her Doc. We saw an increase in seizure activity as a result of the wean. Its counterintuitive that a side effect of a seizure med is seizures, but the human brain is a complex, marvelous thing, and isn’t fully understood.

I can control what I can control, and more than anything, I can control how I react. As a warrior, I am not privileged to have obstacles or opportunities. Those are reserved for normal people. I have challenges, and whether they are good or bad is relative; they simply are.

I will focus on the good. I take responsibility, but I will not dwell in my error. I choose joy.