Saying “verbal diarrhea” sounds comical. In writing, the phrase looks vulgar, but who am I kidding? I’ve considered an alternate title, yet this phrase succinctly and correctly captures my crass, adolescent-dude-masquerading-as-middle-aged-mom to a tee.
I own the affliction. The shoe fits and all.
The Muscular Dystrophy Association’s summer camp director emailed me a few weeks back, asking if I’d be willing to share our family’s MDA story, to share what camp has meant to my son and/or to us.
I loathe asking for money (but PLEEEEEEEEEASE donate to our 2018 Muscle Walk campaign by clicking here). The list of things I’d rather do than solicit donations for our Muscle Walk team covers more linear feet than the distance from the earth to the moon, but I can write and I can talk. So, after joining the MDA “family” three years ago, I finally went to a family hoe-down. And by hoe-down, I mean business meeting. MDA staffers from around Wisconsin met to kick off this year’s camp planning, and asked me to toss in my two cents. Everyone introduced him- or herself, so I knew who to thank, and that is how I began: with thanks to them for their work on behalf of individuals afflicted with crap muscle disease.
I think I was meant to be inspiring. Stop laughing. I can hear you over here, you know.
I was decidedly not inspiring, but I did share our narrative. Not knowing my audience ahead of time, not knowing how many people would show up, I did not prepare any remarks. You speak differently to a group of ten people around a table than you do in front of an audience of a couple hundred, so I flew without a net.
We have a story, and my recitation of our story feels and probably sounds like a script. I don’t know if that’s what they wanted of me, but that’s what I related: our story. I talked about how we came to learn about MD–how an offhand “It’ll probably be months before they get you in, so don’t worry, it’s just a rule-out” became “He has an appointment with Children’s Hospital Neurology on Wednesday.” I said, “You’re all lovely people, but I wish I didn’t have to know you.” (and no, I didn’t use the f-word because I used to say ‘I wish I didn’t have to effing know you,’ but they invited me, and you don’t use the f-word in a business meeting. Usually.
I explained that immediately following the diagnosis, I took to the internet to chronicle my feelings. It wasn’t shameless blog promotion, because really, my blog hits a pretty boutique market–I’m not for the masses, I get that–I didn’t bring it up to ask them to read it. I brought it up I guess because this blog has been my companion since that horrible January day. Nearly every MD revelation that’s floated through my cortex has found its way here. Three years later, I’m still Greater Than Gravity-ing.
And now I can add talking too much to my MD mom experience. The members of the group with whom I spoke were gracious and attentive, but I couldn’t shut up. I just kept pushing through my narrative, kept talking, staring off into middle distance too often probably. I wanted to tell them exactly why greater than gravity, but that wasn’t part of the script I didn’t know I had followed I guess. But that’s it! Love. The love I have for my child, the mama bear love that makes me have to write so that I can deposit all the marbles rolling loose in my head and be present for him. Love. It’s greater than gravity. Betcha Ed didn’t know how much that, or any lyric would possibly come to mean to anyone when he wrote the song. It’s dumb if you’re not me. I know, it’s OK.
Muscular dystrophy is my kid’s story, not mine. My story is how I became an unwitting blogger after learning my child had a progressive, terrible disease, and how this unintentional blog has become my confidant. Since the patina of shock has now been dulled by three years’ time, I don’t write about MD every post. But I have this collection of 200+ stories about parenting two boys, public education, my friends, Barenaked Ladies, baseball, my squishy-faced, sock-stealing idiot rescue dog (whom I LOVE), and kitchen remodeling. I wonder how bonkers I’d be if I hadn’t written this all down.
Through my collection of tales, I’m given opportunity to thank those people who matter tons to me, and I’ve been able to educate, inform and yes, raise some money for the MDA, so kids like mine can find where they belong. Even if it’s only for a week, it’s A WEEK. You just don’t know what that means, to find your home. For my kid and too many others? It’s greater than gravity.
They asked me to read the letter I wrote to the camp counselors last year and I did. I didn’t even ramble on. I didn’t even ugly cry. It was hard, but I did it. I can talk and I can write. I may not be a top fundraiser this year, but I did a good thing.