I’ve written before that I joined our local chapter of the Muscular Dystrophy Association’s Facebook page last year. The group is designed to provide parents/caregivers some type of what, outlet? Common ground? Support? At the time of that particular post I remember writing that I’d been pretty much mute there. Well that almost changed on Friday. Almost.
Last Friday, the group’s moderator, in the spirit of #FeelGoodFriday, asked members to share good things that happened that week. I started typing a message, but stopped. Back space, back space, back space. I began anew, read my draft, and deleted the whole of it again. I started a third time and just closed my Facebook app.
There is a wide range of types of muscular dystrophy, some significant and handicapping from birth, others less so in the immediate, more progressive, like my son’s–present at birth, but with symptomatology growing over time. It’s important you understand the range; it’s an important part of and in preface of the tale I am to tell about the highlight of my son’s athletic career.
In keeping with the NCAA basketball tournament (yawn. . . sorry, it’s not my thing, but it’s also not entirely not my thing), my son’s physical education teacher coordinates a 2-ball tournament. The middle schoolers and some teachers form 2-person teams, and the brackets begin. I wish I could tell you about 2-ball, but my 12-year-old isn’t exactly loquacious, no, he is more of the 1-2 word answers these days. . . Understanding what the game entails would certainly add context to my story today, but it’s hard to capture nuance when all I get in return is a yes/no. It’s actually harder, because even to formulate questions absent fundamental knowledge is a trick. I’m pretty good with words and can inference like nobody’s business, but alas, no match for the 12-year-old. We’ll have to suffice with it’s a basketball shooting game played in twos, where each player has to make a certain number of shots from around the key, and both players have to do this in less time than their opponent.
The night before, my big kid makes an offhand reference to the tournament finals being held the next day, Thursday. My husband and I give him the “do your best, have fun, work hard, be a good teammate” blah-de-blah (except really and sincerely we mean that and we say it with enthusiasm, not blah-de-blah, but the 12-year-old doesn’t rise to our enthusiasm–shocker, right?). Near the end of my workday Thursday, my friend Shelly, who happens to be a teacher at my son’s school as well as the mom of one of my son’s friends, texts me this:
Make sure you ask about the 2-ball tournament, just in case he doesn’t say anything.
In reply, I write:
Oooh, I’m intrigued. He did mention it for the first time last night, so at least I knew it was a thing. I’ll let you know what I hear from him. Should my stomach be hurting?
My little kid comes home hooting and hollering about the 2-ball tournament, how much fun he had watching it, how a bunch of classes were watching it in the gym while other classes watched it on the school’s closed circuit TV channel, and how big a deal it was. My big kid? “Oh yeah, we made it to the finals, but we lost to the twins.” So I spend the next four hours trying to extract details from the kid. There’s a a pulling teeth metaphor that could fit here, but really, getting the story from my kid was harder than that. Much harder. Thank stars for Shelly, whose follow-up made me cry in the good way:
It’s a big deal in the middle school! Kids are in teams of 2 and each player needs to make 5-6 baskets at certain marks before the other team of two. He made it to the championship round!!! He and his partner beat some 8th graders (who were sore losers) and Mr. M (the gym teacher) and his partner. IT WAS AWESOME!! I thought he might not say much, so I wanted to make sure you knew!!
Holy crap, you guys!! Good parents that we are, we marked the occasion with frozen custard (you don’t? what? why not?). We celebrated at Kopps, a local burger joint for an almost-victory cheeseburger as large as your face (NOT an exaggeration) and dish of custard so creamy it could stop your heart. Yum-may. Finally, thanks to Shelly, I feel like I get it now, I get what a big deal this is, and I say to my kid that not only did he make it to the finals, but also was probably (most definitely) the only kid in the tournament with MD. Then finally he smiled for a moment, genuinely and thoughtfully, and allowed the acknowledgement. I was glad I had sunglasses on.
So. Back to the MDA Facebook page, #FeelGoodFriday–Why was I reticent to share my son’s slam-dunk kind of day with the MDA group? Why didn’t I want these people I don’t even know yet to know about my kid’s success in a basketball shooting contest?
Because some of their kids can’t walk, have never walked. Some are on ventilators. Some have health complications so significant that families can’t leave their children alone. I’ve cried for a year and some now over my son’s disease. Not every day, and not the ugly crying I did when we first learned about his diagnosis, but I weep for a future limited by this awful disease. The world is not kind to those who are different, and I worry so for my son. This is not to say that his future is limited. No. It’s just that it’s going to be so much harder than it is for an able-bodied individual. Would I seem like a giant jerk sharing what is likely the pinnacle of his “athletic career” with parents of kids who have never walked? I mean, my kid made it to the finals of an athletic competition. OK, I’ll grant it’s not FIFA or Wimbledon or the Grey Cup, but he had a day of success in a contest of athletics. And luck. He had pots o’good luck on St. Patrick’s Day to be sure. Not bad for a German/Polish kid, huh? He doesn’t get those often, friends, no, he doesn’t. My mother-in-law, a saint right here on Earth, always says that someone’s always got it worse than you. She is correct, but it doesn’t mean I have to like it, right? Somehow though, celebrating my son’s almost-win felt a little in-your-face.
And that is how I knew I crossed over into the Bizarro World. Sometimes the view from Wendy’s cortex is blurry, dontcha think? It’s OK though, I think I like it here.