The Devil of Dystonia

For the first five years of Oliver life, we were able to find work a rounds for many of his physical limitations, essentially sweeping under the rug the level of his disability. When we wanted to hike, we threw him in a baby backpack. When we wanted to travel, we changed him on the baby changing tables. When it was inconvenient to bring his wheelchair, we opted for slinging our Special Tomato chair over our shoulders and carrying him into a restaurant. And sure, we’ve known those days were numbered. But sometimes, as long as you prepare for something, it still hits you like a ton of bricks when the day arrives that things have to change. For us, that day has come. 

Last night we drove down to Seattle for Olivers appointments and went out to dinner at Veggie Grill. It’s a place we used to love going in LA. Friendly laid back environment, fresh healthy food. It was our jam. But last night things felt different. 

We did what we’ve always done… Got Oliver out of his car seat, flung him over our shoulders and grabbed the Special Tomato to strap onto the back of the restaurant chairs. But when we sat down, we realized the critical error we’d made. 

When Oliver gets excited now, his entire body extends, he kicks HARD and his arms flail wildly. Although this is something he’s always done, it is different now because he is BIG and STRONG. Last night he was kicking so hard that the chair he was strapped to was falling over. After switching tables 3 times, we eventually gave up and just forced his legs to straddle our bodies so that he’d have less leverage, and held onto his arm the whole time we fed him so he couldn’t knock everything off the table. I’m not doing a great job putting the frustration and stress into words this morning but trust me when I say, it was NOT the relaxing meal we were hoping for. 

Conrad and I switched off holding him down so that we could finish our meals but during my turn to eat, my sole focus was counseling myself through the grief that was bubbling up, and trying to devise a strategy by which I could each my food mindfully so that maybe, just maybe, it wouldn’t cause me excruciating gut pain. I can’t say I was wildly successful on either accounts 😂

Our day has arrived. We can no longer fake our way through the HIE life. The bigger he gets, the more reliant we will be on very specific equipment and treatments to help us manage his growing body. Freedom to roam the world looks different now and that’s a hard pill for free wheeling hippies like us to swallow.

Today Oliver will be evaluated for the Baclofen Pump implant. It’s a daunting option that could offer him significant relief but possibly also chronic pain. The anxiety in my body is all consuming. It’s a decision I, in no way, feel ready to make for my child. 

Lying here in the dark this morning, I’m trying to employ all of the self care techniques I accumulated over my month away. Breath work. Writing. Meditation. Acceptance. Every and all attempts to calm a nervous system that, for all my efforts, honestly feels pretty overwhelmed right now. 

In a way, I’m glad we had such a terrible time at dinner last night because it’s helping me to go into these pre surgery evals today with the knowledge that something HAS to change in the management of his spasticity. I’m thankful, at least, for this little bit of reassurance from the stars, that although we’re faced with more shitty decisions, they are necessary and the time is now.