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.
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).
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.