Beep Beep

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.

Golden

It’s my big kid’s golden birthday. He’s fourteen on the 14th.  He hung on to life on the inside nine days longer than expected, that giant baby did. I was a house, no, I was an estate by the time he decided to make his way. He was worth every second of that extra nine days’ wait. Happy birthday, my son.

You’ve had quite a run here these last few weeks. In no other place I know, eighth grade students face the immense pressure of getting into a “good” high school.  You vie for “golden tickets” for open houses at the “good” schools, complete online applications, audition, request letters of recommendation, draft essays, and wait in a block-long line to get a space for the formal test.  I don’t recall having done this much groundwork for university matriculation, and I got a really sweet scholarship. The pressures you and your classmates face should be found only in a dystopian work of fiction.  Growing up anywhere else in the world, you’d go to the school nearest your home in the city you live.

You admitted nerves, but you conquered them with persistence. You felt unprepared, but you proved that showing up is half the battle.  I’m proud of you.

Now you wait.  Letters of acceptance arrive in December, and our family’s future hinges on what you read in that mailing.  (Friends, if you’re reading this thinking I’m chock full o’ my usual hyperbole, know that in this case I speak the level truth.) Number 1 and Number 2 choices are solid–I know you’ve got the heart of Husky, but you could be a General too, and that would be OK.   But you were under-impressed by the Owls, and choices four and five simply aren’t choices.  One and two mean we stay; any other return means we go.  We move to another city.  That’s OK.  We’re prepared to do whatever we need to do for you and your brother.

There are days I don’t know what I want to see revealed in that acceptance letter (OK, I WANT choice #1).  I’ve never in my adult live envisioned living outside the city, but would the ‘burbs really be so bad?  Not bad, but not me.  Not us.  Maybe they’ll fit perfectly.  Maybe not.

Wait, this is about you, YOU my boy.  It’s your birthday.  I’ve wondered what to get you, what kind of material gift to give you.  You give away very little, but you let me in on a little secret Monday, and I feel though it’s your birthday,  I received a little becoming-a-mom-day gift from you, and you don’t even know it.

I nag on ya for spending all this time staring at your phone, earbuds ever-present to the point of appearing surgically implanted.  You’re a YouTube zombie–you don’t even hear me when I yell at the top of my lungs for you (and I’m no delicate little flower), and no matter how many times I crab at ya for blasting your music too loud, you don’t seem to heed the lesson.  Neither did I.  Which explains a lot about why my hearing thresholds are what they are today, and though I wish to serve as your cautionary tale, I’ve come to realize that you do have a little bit of your mom’s heart beating inside your own.

Eighth grade me was not skinny or popular or beautiful.  It shouldn’t matter when you’re fourteen, but it does.  I was not confident.  Or cool.  I was hiding inside my room in the dark, trying to figure out just what the hell I was. I was first chair in band.  I was the middle school salutatorian.  I was reliable and dependable. I was the fastest girl sprinter in my middle school. I was everybody’s friend, which was freaking awesome. I got to do a lot, I guess, but I didn’t believe any of that at the time.  I felt never good enough.  I mistrusted every accomplishment as dumb luck, and deflected any positive comment cast my way.

Middle school is a labyrinth of all the unkindest cuts, and I bled.  Wound care was administered in my headphones.  Music was my solace.  LOUD music, the bass thumping so loud that the headphones quite literally bounced off my head.  So loud you could sing along from downstairs.  Lying on my bedroom floor, wrecking the shit out of my hearing despite your grandparents’ strongest protestations, I found me.

And I think maybe you have found yourself.  You’re finding yourself anyway.

I learned this week that all your time isn’t in fact spent watching banal, inane YouTubers riffing video games or opening Pokemon cards.  You’re listening.  You’re picking songs I loved when I was your age when the ancient version of your earbuds (my headphones) were eternally attached around my head.  You love the band Rush.  You hear Subdivisions and interpret the music video for me.  You sing all the right words, just like I do.  You pull meaning from those song lyrics, and maybe the view is a little middle schoolish, but that’s OK because you’re a middle schooler–you’re not supposed to feel like you’re applying for college this year–you’re fourteen.  You get why the guitar solo in Limelight rocks so hard.  You mention that Geddy Lee’s bass inspires you, and until this week, I’d never heard you utter the word inspire.

You used to write, can you recall?  You created notebooks upon notebooks of beginnings.  Your author’s dreams were grandiose, you had designs on writing the next great American (elementary school) novel.  You began hundreds of tales, characters based not-so-loosely on yourself and your friends, and other literary characters you enjoyed.  You haven’t created a great body of work in a while, but now you want to create music.  You wanna make some noise, learn bass lines and play along with your new really old favorite songs.  Guess what you’re getting for your birthday, kid?  Four strings.  Rock. And also roll.

“Dude, we gotta start a band!”


Your birthday fills me with longing–your sweet baby cheeks, your feather light tufts of blonde hair, the corners of your blue eyes, now green, turned up when you smiled. Things were quite simple then–little kids, little problems. . .   Your MD, my “management” of your diagnosis that is, is what made me carve out this outlet, my little creative writing .com of the internet.  However desperately I wish I hadn’t felt that pull to write, I am thankful for this outlet.  What a weird thing to say thank you for.  Thank you, my boy.  Happy Golden Birthday.   Get on that bass and rock, kid.