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.

 

Comedy

 

My oldest daughter, Selah, came to me last month and said she wanted to be a stand-up comedian. I suggested some comics who I thought she’d like, and told her about a youth open mic event downtown.  She had about a month to write her routine. Her first few drafts were AWFUL, but she kept at it. She practiced in front of a mirror and recorded herself. I refused to help with her writing, but I did help with her timing.

When the event came, she was a little nervous, but just a little. I asked the organizer, a friend of mine, to give her some advice, and he gave her some quick pointers. When she was called, she decided to do it without her notes.

She killed! She was comfortable, and though she’ll  be more polished with more time, she seemed in her element.

I’m very proud of her. She was able to turn her personal experiences into something relatable and funny.

So now it’s my turn. I’ve been a fan of comedy going back to when I first watched Eddie Murphy’s Raw way too young. I love Eddie Izzard, Hannibal Burress, Robin Williams, Zach Galifianakis, John Mulaney, Maria Bamford, Hari Kondabolu, Jim Gaffigan, Mitch Hedberg, LaVell Crawford, Margaret Cho, and Chris Rock, just to name a few. I’ve been listening to comedy podcasts, reading comedy blogs, dissecting routines, and writing for years. i’ve also been following the career of Jonah Ray. It hasn’t been an all-consuming compassion, but it’s been on my mind a lot. I accepted long ago I was going to try my hand at comedy.  I’m researching open mic nights in Albuquerque, and doing what Selah did. I’m going to try, and it’s likely I will suck. That’s okay. We’re not supposed to be masters of something the first time we try it. I’m going to do it, and I’m going to have fun, and I’m going to tell you guys all about it.

A Temporary Denouement

After the hustle leading up to Easter, it’s nice to have a bit of a slowing-down forecasted. The kids will be on spring break, I’ll have a week between semesters, and I’m taking a few days off from work. I’m anticipating sleeping closer to 8 hours a night, at least for a little while. Perhaps I’ll even be able to read a few books.

Things are winding down at work as well, as I hand off responsibilities. I want to leave the Air Force well, and have closure. The tradition is to have a luncheon. Since my departure is almost like a retirement, after almost fifteen years of service, I know my co-workers want to do something big. I’ve never been one for parties in my honor, but I am willing to go through with it for them. I do get to ask the machinists to make something for me, which is cool. When I left my previous base they made me a pair of brass knuckles which doubles as a bottle opener.

I know my next job will be challenging, that the grass isn’t always greener,and perhaps I’m projecting too much-but I’m really looking forward to this change. My stress levels are lower. I feel hopeful. I make a practice of gratitude, but it typically starts out as being a bit forced, whereas now it’s spontaneous and flowing. My mood has been stable. I don’t feel like eating junk food all the time.

I know they won’t connect to it now, but I hope in the future my kids will understand why I left the military, that it wasn’t easy, that it scared the shit out of me, but I did it anyway, because Who Dares Wins. I hope they internalize how I set goals, worked toward them, and achieved them. I hope they soak it up and learn from it for their own lives, which I’m pretty hopeful won’t turn out terrible.

Hope. Hope is something I haven’t consistently felt in about 2 years. It’s nice. When I was at my lowest, the most stunning aspect was the absence of hope. Perhaps I will also leave behind this tough season I’ve been weathering as I take off my uniform for the last time.

 

 

 

 

 

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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