Swan Song, First Verse

Ho, ho, ho! Merry Christmas! Though no longer a religious observer of the holiday, I do love that warm feeling Christmas brings as we’re blanketed under the generosity and kindness shown in great abundance this season. I hope you’re basking in the glow of the light of the season, spending time with your dearest ones, and maybe enjoying a cookie or two too many in celebration.

Because we’re assholes. It sounds so coarse, I know, but it’s not inaccurate.

I’ve received many gifts–material, sure, but not material is where I’m going with this–throughout the course of this year, but I have yet to pick out the perfect package for you, you terrific people, this Christmas.  It’s not Scroogean tendencies that leave me empty-handed; it’s that I’m parked at a fork in the road.  Or a really long red light.

Last week was my son’s third annual checkup since the day, since the diagnosis day, now almost four years past.  Time, she do fly. . .  Early in his diagnosis, I felt overwhelmed by, well, by everything.  Absorbing the diagnosis and making that fit into my vision for my kid’s life consumed me.  That’s not accurate; rather, I found his diagnosis incongruent with my vision.  It wasn’t denial, though it sure as hell wasn’t acceptance through which I wandered.  Everything I ever believed and hoped for my baby changed in an instant. When you hold your newborn, joy is the only word you know.  You count fingers and toes over and over, and you kiss his tiny head knowing he is the most beautiful baby ever to be born unto this earth.

Milestones pass or are missed, and the vision for your child morphs.  That vision becomes cloudy, then dark, black as coal sometimes. Other times you’re glass half-full, your tunnel vision allowing the tiniest sliver of light to be seen at the distant end of that tunnel.  Today, consumes is not the most pointed verb I use to capture my relationship with my son’s MD diagnosis.

I don’t write about MD every day anymore.  MD is never not served up on my dinner platter, but it feels more like a side dish than the main course, some shitty fruit cocktail-bejeweled Jell-O mold instead of a succulent beef tenderloin.

At this most recent appointment, I was thrilled when his neurologist announced she wouldn’t even recognize my boy on the street, that maybe even he seems better than he’d been the year prior.  My son talked about his success in school, beaming–positively beaming–when he boasted about his school’s third place drumline finish, to which she replied, “I’ve never had a patient be part of a drumline before.”  She put any muscle biopsy that, quite frankly, we’d quite been avoiding anyway, on hold, not necessary at this time.  He is stable.  With a note for the gym teacher about weakness and fatigue, and a brief chat about the potential for contracture of his hands, we were ushered out with a hale and hearty, “See you next December.”

The appointment forced me to admit to him that while he wants to keep MD a secret, I’d long ago told his teachers.  I wanted to ensure they were made aware that fatigue and weakness are not the same as lack of effort and poor attitude.  Physical Education can be hell on earth for able-bodied individuals, and I remain borderline-to-slightly terrified that even after our meeting with the gym teacher Thursday, my kid will still get a bad shake.  But that’ll be another post.

Or maybe it won’t be.  I have 28 post drafts saved.  Posts I drafted as early as 2015 to as recently as last month will be consigned to a multi-volume unfinished symphony.  It’s time to take a break.

Writing saved me from myself in the early days.  My soul felt annihilated, I didn’t know where to turn.  I wanted company, but only on my terms, and I was not great company. I was vehemently opposed to becoming part of the MD “family,” so I turned to the great unknown, the new millennium’s confessional: the blog.  Writing here saved me from the depths of motherly despair.  It’s not the finality of a death one experiences when a child receives a crushing medical diagnosis–it’s paralyzing grief over an altered or stolen dream. Like that vision, this grief morphs too, but it and guilt, my constant companions, never leave my side.

My little blog has lost its focus though.

OK, keeping it real? I’m a little *squirrel* on a good day, so “focus” may be not the right word to explain why a writing hiatus is appropriate. Politics and crime and education and inequity and poverty are suffocating my joy, and I want not to lead with anger and frustration here.  Sure, the blog was borne of maybe the saddest realization I’d had, but I wasn’t all “Get off my lawn, sonny!”  I was sad, not mad.

One of the material Christmas gifts I received was accompanied by a note. The note was as charming and clever as its author, a brilliant colleague, and a sharp reminder of how not fun I’ve become.

For a short time, I fancied myself a writer. You read the stories I wrote here–that’s writing. . . right?  You told me I made you laugh or I made you cry. Sometimes you felt outrage alongside me, you said, or gained perspective from a story I shared. You spent your time and read words I wrote.  You told me some of it was good.  I will never be able express what your many kindnesses have meant to me.

My observation and wisecracks about parenting, MDA summer camp, yoga, bicycling, stupid effing muscle disease, working in the inner city, my idols, the Barenaked Ladies guys, baseball, my idiot dog (you know I love you, Caleb Rawr-Rawr), my husband, my assorted physical shortcomings and injuries, my friends, the music that keeps me connected. . .  Each of these events, ridiculous and/or heartfelt—sometimes both—were stories I needed to tell, and loved telling.  Well, I loved telling the funny ones anyway.  I needed to tell you the other ones.  Thank you for reading them.

I’m terrible at goodbyes, even temporary goodbyes.  I’ll be back–my hiatus is temporary–but until then I’m going to miss this confessional.  Greater Than Gravity (first the song lyric, then this project) saved me when I needed to be saved.  YOU saved me when I needed to be saved, which apparently has continued for period of almost four years now. . .   Geez, Wendy.  Needy much?

Writing tells me how I feel  (My six-word memoir, BTW, I finally #nailedit).

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This.  Thanks, Nikki.

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The above shirt came wrapped in this. Do you know what’s weirder or more hilarious than opening a package to see your face alongside your favorite musicians imprinted onto wrapping paper? Because I don’t, I don’t know what’s weirder or funnier. But I also know that I laugh when I look at it, and it makes me happy to know I have friends who are amazing enough to want to create custom wrapping paper celebrating my concentrated hobby.  We should all be so lucky!

I have always believed that when faced with a decision to be made, you wake up one day and just know.  You just know it’s time to say yes (or no), to leap (or to sit tight), to stay in your job (or quit)—whatever it is, you just know.  I knew I’d wake up one day, knowing it was time to put my story to bed.  Thank you, good night.

10 thoughts on “Swan Song, First Verse

  1. I always enjoy your writing Wendy. I just want to also say that, when my diagnosis came, then the symptoms four years later, I didn’t handle it well. There were days when I was so angry with God, almost to the point of abandonment of my faith. But I couldn’t let go, and ultimately, staying the course changed my life, giving me a peace that I wouldn’t have had otherwise. I’m not a natural truster. It took many years to get to this point, but it has made all the difference. Otherwise, I don’t know what kind of person I’d be today without faith that there is a meaning to the struggle.

    Anyways, I’m not trying to proselytize (besides, I wouldn’t be good at it anyways) but wanted to just say, eventually, all of this will make sense. It’s not easy, but it will. I promise. And your son will be just fine. It already sounds like he is well on his way to doing great things, even if MD may force him to do it in a different way.

    I wish you, your son and your family a Merry Christmas!
    Chris

    Liked by 1 person

  2. Everyone deserves a little break from time to time. And, one day … in the not-too-distant distance … you’ll be sitting there in your car or at your desk or wherever you sit and you’ll have that moment where your heart flutters from the wonderful thinking you have just thought, and then you’ll sit down and write to us again. I’ll look forward to that!

    Like

  3. What?! This is a lump of coal for Christmas! You give me hope, Wendy — that people can take adversity and turn it into something meaningful and even beautiful. I love this blog. I’ll be right here whenever you’re ready to come back to it.

    Nice news about your son’s condition — fittingly hopeful for a new year.

    Liked by 1 person

    • I’m back. My wise friend Jackie, the Baseball Bloggess, reminded me that sometimes writers don’t write because they want to, but because they need to. Call me needy. Thanks always for saying something so nice, and for your unfaltering support.

      Liked by 1 person

      • I second Jackie’s comment and would add that the world right now desperately needs more writers — whether they consider themselves “pro” or not — willing to be emotionally honest, who strive to produce work with meaning. I should stipulate: Having “meaning” doesn’t mean a piece of writing has all the answers, mind you — merely that it’s willing to ask (often uncomfortable or challenging) questions. Greater Than Gravity explores what it means to be a mother of a child with a degenerative disorder; sometimes it’s funny and sometimes it’s sad and sometimes it’s all of the above (and more). Like a good sitcom or stand-up comic, mydangblog tries to find humor and ironic patterns in life’s “little” everyday episodes. In both cases, life experiences are processed and written about with observational detail and emotional candor (even and especially when it’s unflattering), thereby imparting value to anyone who takes the time to read them.

        How many blog posts do you encounter that are a list of nonspecific (or, conversely, too-specific) writing tips, or a top-ten “favorite condiments” rundown, or a “retro review” of some obscure movie from 1983? ‘Cause I see a lot of those, and they’re beyond worthless. There’s no human being on the other side of them, no human experience to relate to.

        How many Hollywood stories these days — particularly TV shows — are just self-perpetuating narratives with no prescriptive agenda, no point? The delphic puzzling of Westworld, the superhero crossovers of the “Arrowverse,” the literary Easter-egg hunt of Castle Rock, the expansive franchising of Star Wars — what do all of these have in common? They aspire to say nothing about the human condition, merely to challenge the viewer to catch all their internal cross-references. (Thank God for The Orville, a show that consciously tries to be about something week to week other than growing more plotlines like tentacles.)

        We have more stories than ever, and the lion’s share of them are utterly dishonest and emotionally/intellectually vacuous. We need more blogs like this one: stories about real people (not superheroes), grappling with real challenges (that needn’t be “profound” to have value, as mydangblog consistently demonstrates), experiencing real life in all its funny, frustrating, thrilling, heartbreaking emotional complexity, and sharing their feelings about that with undaunted truthfulness. You’ve got the skills to write clearly and the stones to write honestly, Wendy, and take my word for it when I tell you that’s more than I can say about most “professional” writers I know.

        Liked by 1 person

      • There is not one sentence I’d construct that would come near to thanking you for what this kind of compliment means to me. Thank you. I would love to respond with a genius-level comeback, but thank you will have to do, Sean. Thank you.

        Liked by 1 person

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