*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.
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.