And then one day, that baby they handed you sixteen-some years ago starts driver’s ed.
When families add a driver, parents kid about skyrocketing insurance rates and their utter lack of faith in their teen’s ability to drive responsibly or safely, sure. Most parents don’t have to consult with their teen’s neurologist about whether their kid needs to identify himself as a person with a disability when it comes to driving. It’s been quite some time since I’ve written about muscular dystrophy. My kid’s recent appointment did not suggest decline and his care team felt that he could commence driving without incident. Yay for 90% of me (100% for him) and holy crap, my kid’s learning to drive for the other 10%.
I once believed that I’d never live another moment that wasn’t consumed by my grief or sadness over my kid’s diagnosis. Funny how managing another massive health status change (ya know, getting run over by a truck as an example) kicked MD from my front and center. It’s not that I’ve forgotten my ol’ pal muscular dystrophy–it’s lurking always, lying in wait just around the corner ready to cuff me upside the head. MD hangs back sidestage, while I wonder now how I’ll ever live another moment not consumed by the accident and its considerable aftermath.
At our most recent speech pathology department meeting, a guest presenter spoke to us about flexibility and resiliency. The professional development section was designed not for me personally as its title might suggest, but rather to help speech-language pathologists more effectively serve neurodiverse students. If that’s a new word for you, neurodiverse has come to include people with diagnoses similar to what many people consider autism spectrum disorders and/or individuals with significant emotional or behavior disabilities. The presentation was meant to better my practice, but me being me, I made some of it personal.
The older I get, the less flexible I want to have to be. My job however is one that requires me to at times drop everything and run across town to cover a last minute meeting or evaluate a student and write a meaningful education plan with two days’ lead time. I used to mind that less than I do now. I do it of course, not only because it’s my job, but also because I’m committed to my career and maintaining what I’d like to believe is a solid reputation. I enjoy predictability more than I’d thought. Hmm.
The dictionary tells me that a resilient person is one who is able to withstand or recover quickly from difficult conditions, see also “an ability to recover from or adjust easily to misfortune or change.” I was feeling all, “Damn, if I’ve learned nothing else from 2019 it’s that I’m one badass, resilient woman.” Then I read more carefully, noting those sticky, tricky adverbs quickly and easily.
My employer has finally terminated its blood-letting. After twenty weeks, I’ve “paid back” the couple thousand dollars they withheld from me when I (fucking naively) applied for FMLA instead of calling in sick the days after Tom’s accident. Still, I have over 1500 sick hours accrued, an account balance that’ll grow or hold steady until I
die retire. Still, not one person, no one from any department from payroll to employee relations, has had the common fucking decency to contact me directly about it. I bet if I worked at Apple or Dunder Mifflin or McDonald’s, someone would have at least had the decency and integrity to call me with a howdy heads-up. I thought I’d be done feeling bitter once I received a regular paycheck, but you know what? Still fucking bitter. You can tell because I used the f-word three times in this one paragraph. Bitter, not resilient.
Super scattershot post, but there is a theme. Well, in my head anyway there is a central thread, and it’s maybe this: Most of us are fortunate enough that we don’t have to be taught flexibility and resilience in an explicit manner, so what, that makes us lucky? All of us lucky ones though, some of the time, have that flexibility and resilience tested.
Navigating our world compels us to be flexible. The world forces us to build resiliency, because the alternative to carrying on in the face of adversity is surrender. Surrender though feels intoxicating, like a warm, lavender-scented bubble bath from which you never want even your pinky toe to emerge. But you can’t surrender. People need you, and even if you don’t feel like being needed, you don’t get to pick, so surrender isn’t an option. Then your kid starts to drive, which for the average parent is unnerving. For the parent of a kid with a disability, it’s a bit more than that.
And there you are: grinding forward, a fake-it-til-you-make-it expression fixed on your face. Flexibility and resilience. I got ’em.
The drummer from one of my favorite bands passed away last week. Neil Peart, Rush’s wizard of percussion and lyrics, succumbed to brain cancer. Rush was my first favorite Canadian band. Their music was my constant companion during middle and high school, and more than just occasionally played here still. My big kid became a fan too, inspired to play bass by their music, spinning my old vinyl records on his school radio station. I was stunned by the news, and days later, still feel a pang. I never met the man, but I will miss him. His music has been important to me. Nothing whatsoever to do with the “theme” of this post, and I use the word “theme” loosely, but writing tells me how I feel, and I miss Neil.