It’s been, as they say, a day.
My parents bought an airplane hangar and are transferring it to our vacation home in Wisconsin. My dad wants to turn it into a work shed, whereas my mom envisions it as an antique store — we’ll see who gets their way. So, my dad has been running around with his head chopped off, balancing renovations and contractors, and a schedule packed tight. He left this morning to dismantle the hangar, leaving me alone with the book I’m working on and zero caffeine because, naturally, my feeding tube had to plug at the worst time ever.
I also had my biweekly massage today, so my personal care assistant (PCA) and her daughter dropped by around 2 p.m. to transfer me to my bed. To my complete surprise, I was able to stay in the moment and enjoy the massage. Regardless, I’m still feeling the creeping unease of anxiety. We’ve been running nonstop for weeks. We’re nearing the end of the renovations, so at least there’s an end in sight, but even so, June is shaping up to be a busy month.
My mom is going on two business trips, one to London and another to Brazil. The day after she gets back, we’re setting out on a five-day road trip to Anaheim, California, for the upcoming Cure SMA conference. We made a last-minute decision to go, so we’re scrambling to book hotels, reserve Disneyland tickets, and schedule meetups with everyone I know, from co-workers to long-time gaming friends. Oh, and somewhere in there, I’m getting headshots taken because apparently, I’m a glutton for busyness and professionalism.
The other day, my PCA joked that we’re the least boring people she knows. We had to laugh because it’s true. We always have something going on. If I’m not sick, my parents are juggling some sort of home improvement project. If I’m not in school, I’m writing; if my dad isn’t building something, he’s gardening; and if my mom isn’t globe-trotting for work, she’s putting together the floor plan of her dream home.
It’s one thing after another. And it never stops.
I thrive on the chaos. So does my mom. My dad, on the other hand, is a proponent of single-tasking, which is something I’m — ironically — trying to practice this summer. Our house is a mess and our calendars color-coded monstrosities — we do not know how to slow down. We tried so hard — and we still ended up here!
I should clarify that I’m looking forward to Anaheim. Among other things, I’ll get to go to the new Star Wars park, which has been on my bucket list for years. My dad is looking forward to the beach (we always schedule beach vacations in December, for some reason, so this time he’ll get to soak up the sun), and my mom is looking forward to all of the places we’ll be hitting en route. So it’s not a bad thing! We’re still wrapping our brains around the fact that, hey, we’ll be driving halfway across the country in five weeks.
Still, I find myself feeling grateful. 2019 has been unnecessarily, and perhaps overwhelmingly, kind to me. It feels like a stroke of luck, one I’m not entirely sure I deserve. But it’s been filling my heart with light today, amid all the stress and the flurry of emails between my mom and me as we debated vacation dates. Life is unpredictable and messy and I’m so happy to be here. Happy, and thankful for my parents, who looked at each other across the dining table and shrugged when I mentioned the conference.
“You kind of have to go,” my mom said.
“It’s like it’s meant to be,” my dad added.
Maybe it is, or perhaps it’s some random twist of probability theory. Either way, it’s happening because of them, their fortitude and selflessness and — even though they deny it — that bud of desire in each of them, the spark I inherited that drives us to chaos and adventure. It’s all because of you. So, if you’re reading this, thank you. I promise you’ll get 75 percent of my book royalties.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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