Finding the challenge

*Trigger Warning* This post discusses the loss/potential loss of a child.

I’ve been feeling quite burnt out lately. The culprits are sleep deprivation, and the permanent high anxiety of parenting a child with Dravet Syndrome. The hypervigilance is crushing me. Normally I’m annoyingly,genuinely positive. Ebullient. Effervescent. I can pick out the silver lining from a mile away, and turn a negative into a motivating challenge, but no dice. I haven’t been able to do so this time. I believe it can be done. I have faith I can find a way to make this a driving factor, but I haven’t found just how to stitch it together.

I feel like a whole person who is moving toward wellness. I feel more resilient everyday until a major setback. I know if I can turn the corner and be motivated instead of overburdened,  I would be a much more effective, happy, and alive person.

So much has changed in the last year. We drove a Mazda towing a U-Haul trailer with 3 kids and a dog from coastal Virginia to the Northeastern corner of Utah, by way of Texas. We went to Hawaii. I got a promotion. We’re actually living the life we’ve been dreaming of for years. We have achieved major life goals- we bought a house with a fireplace on a quiet street in a walkable neighborhood. We’re near bike/hiking trails and coffee. We wanted to be engaged in our community, and we are. We have great neighbors. We have chickens and a kickass garden. My wife and I are both in school for creative writing. We’re plugged into a church that is dedicated on making Earth suck less for it  and her inhabitants. I genuinely enjoy my work and coworkers.

This is what we wanted. I am grateful. I need more friends, but our life largely looks like what we’ve been hoping for. Things are good.

Except….

Yeah. Sweet Paloma, who steals food and hugs strangers. The monkey baby who moves furniture to facilitate better climbing and sometimes does.not.sleep. She’ll get tired and crappy, but literally stay awake until 4am. In those moments, it’s tough to think about the amazing life we’ve been able to craft, but incredibly easy to think “I might actually die. I might for realsies just drop dead, because, as the formula reads, >3 hours sleep/night  x (weeks)=death“.

Thus, the first challenge is finding the challenge. What am I responsible for? What’s something I can control or influence? How can I go from just surviving (barely) as a victim of circumstance to having a fire in my belly again? What can I change my thinking about? Would I rather fight 100 duck-sized horses or one horse-sized duck?

I am grateful for the all-nighters, even when they’re killing me. My stress level is high. My hair is thinning rapidly. Like Bruce Willis in The Fifth Element, I am one bad haircut from just being a bald dude forever.

I’m grateful because it means this condition hasn’t robbed me of my child, as it can,  at any moment, forever. Any of us can die at any moment, but her likelihood is insanely higher.

I’m not okay with that. I haven’t perfected non-attachment. I don’t know how to be a person who has suffered the loss of a child. I know people who have endured it, but I might not be made of the same stuff as they, and I don’t want to find out. I don’t think this is an idea I’m likely to be able to frame positively.

I don’t think I have to accept it. I think I can hate it and freak out about it for the rest of my life if I have a commitment to grattitude. Maybe that’s my challenge.

After Selah’s accident, I made it a point to write a list of everything I was grateful for. Electricity for her life-support equipment. Coffee. Medical insurance. Oxygen. A place to sleep. Indoor plumbing. The list got easier as I went on. It was difficult to intentionally cultivate gratitude, but I did it.

I get snarky and a bit jaded at times. I get tired or hungry and bitchy. In those moments (and now- I have a bad cold, and am feeling miserable), I can still be grateful, and I can still have joy.

I was talking to someone about joy, about how I didn’t view joy as superficial bliss, like “Walkin’ on sunshine.” Joy is funky and subterranean. Joy smells like tree roots. It lives deep down, right next to hope. It’s always there, no matter the weather on the surface world.

I challenge myself to seek gratitude and joy, especially when I want to scream at a bad driver or roll my eyes. Especially when I’m being a petulant little shit or I’m running late or the dog steals my socks.

I choose joy.

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.