So You’re Aware

September 30 is Limb-Girdle Muscular Dystrophy Awareness Day.  Now you’re aware.

Because we haven’t opened our son up for a muscle biopsy, a diagnosis of LGMD is merely a hypothesis.  It’s consistent with his grandfather’s diagnosis, but its most frequently occurring subtypes–there are more than thirty–did not show up in a DNA screen when our son was first diagnosed.  Limb-Girdle MD is the front-runner for official diagnosis.  When we became a member of the MD “family,” (yes, quotes around family, because you know I wish my son had other relatives, like maybe MENSA or the MLB or any of the thousands of organizations NOT borne of medical necessity) I was very much in favor of medical testing in any or all of its forms.

I wanted to know the name of the bastard attacking my son.  I wanted to look it in the eye, stare that monster down.  I wanted to know everything so I could arm myself with data, facts, and the predictive information every mama bear needs to clutch to.

Instead, my husband dug in his heels.  Dug in passively, anyway, he’s not so much the stand taker than I am.  He did not want or need specific data points to be my kid’s dad.  He plodded along, blissfully unaware (my phrase, not his), just being the same ol’ dad guy he’d always been.  He did not support a surgical biopsy.  The diagnosis would not change anything for our son, he believed, all it would do is provide a place to hang our hats.  It’s not the only point on which we disagree(d), but elective surgery is kind of a big deal, and not a 50% kind of deal, you know?

Over time, together WE decided that if and when our son wanted a diagnosis, we’d support him in that, and by “support,” of course I mean pay for the procedure if that time falls when he’s still under our insurance.  It’s a day surgery.  We came to agreement that if our son got a point where his curiosity about his own health status or medical or treatment necessity came into play, the biopsy would serve its purpose then.  For him.

My boy was eleven when diagnosed; it’s hard to believe he’ll be fifteen in a few weeks.  So much has changed, but not his diagnosis.

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This photo does not belong to me, nor does it likely belong to whomever swiped it from NBC, but you see where I’m going with it, right?

Today is LGMD Awareness Day.  Click here to learn about LGMD, to heighten your awareness, as it were.  It seemed absurd to me that an awareness day was a thing back in what I now think of as my “early days” of the MD ride.  But as I find myself staring down high school physical education class with abject terror for my son, I would love for his gym teacher to be aware, you bet your booty.

My niece is running the Chicago Marathon next Sunday, a member of Team Momentum, the Muscular Dystrophy Association‘s fund raising and awareness squad.  Y’all, the girl is running a marathon for my boy, for her camper, for her grandfather.   She’s a remarkable young woman, whose bravery and commitment brings me to tears every time I think about it.  Go, Lauren!  We love you.  Aaaaand, yeah, I’ve got the tears. . .

Grief-Bacon

A friend of mine calls Facebook the devil. I disagree. Were it not for Facebook, I’d never know that kummerspeck is a thing (FYI, kummerspeck gets autocorrected to jumpers peck–like that’s a thing someone would say, Autocorrect, you loser.  I’m sure. “Hey, did you notice Helga’s jumpers peck?” said no mean girl Teuton ever.) See, kummerspeck is a German word with no English translation, and I learned this because of Facebook. Thus, Facebook cannot possibly be the devil, as it’s educational.  Thank you, Grammarly.

And this is related to a muscular dystrophy diagnosis in this way:  Doritos, Oreos, mashed potatoes, along with an entire pantry of foodstuffs not ending with the “o” sound are killing me. In the US I think we call it stress eating or soothing with food or some pop-psychology-esque euphemism, but the end result is kummerspeck.  Go, Germans on this one!  You sound like you’re yelling at us when you talk, even when you whisper, but with respect to kummerspeck?  #nailedit  And I got me some damn kummerspeck (which is now in my iPhone’s text prediction window, which is freaking awe-some). Not a lot, not yet, but it would will be easier than falling off a log to keep adding to my store of grief-bacon if I don’t check myself.  Crap.  Scheisse.  I’m killing myself with “scheisse” here, people.  Linguistics.

In other news, and in a REMARKABLE SHOW OF PARENTAL RESTRAINT, I refrained from calling out my son’s dick move this morning, instead going with “jerk move.”  By comparison, it doesn’t yield the same mouthfeel satisfaction, the word “jerk,” but he’s 12, and I’m the mom, allegedly modeling socially appropriate, adult behavior.  This parenting gig is NOT for the weak.

Thievery: It’s NASCAR For Fat, White Women

I suck at Twitter. 140 characters are simply not enough for me. I want not to suck a Twitter, because I think it’s kind of cool to connect with people I otherwise would never be able to meet, but brevity is not in my wheelhouse, and my hashtags are amusing to me alone. Recently a casual acquaintance of mine who apparently reads my lame-o tweets from time to time but doesn’t follow me, because I am simply not captivating enough at or under 140, messaged me with some tone I might add, writing, “You know that you’re a plagiarist, right?”  The message was prompted by this tweet:

“You’re lucky they don’t sue you for intellectual property infringement :-)” The smiley face emoticon was cute.  Really?  Well, I suppose so.  I DID take the name of my blog from the lyrics of my favorite song, so yeah, Ed, I stole from you.  He wasn’t the first in history to string those words together either though, so to my accuser, I say “suck it.”  Because I am classy and used the f-word like three times in my last post, and “suck it” is lighthearted enough when said with a smile not to offend deeply.  I’ve used Barenaked Ladies song titles as blog post titles, so yeah, Ed, thanks for not coming after me for those too.  I admit wrongdoing, and further, I’ll admit that thievery and copyright infringement (Is that even the thing I’ve done?  Larceny is stealing property from someone, so it’s actually probably not larceny, but what is the name of the crime I’ve committed?  Help me out, legal eagles.) hadn’t occurred to me at the time I launched my creative writing therapy.  I launched the blog four days after learning my son was afflicted with a debilitating disease and I was broken.  “Launch” is awfully darn self-important,  Wendy, go on with your bad self.  Who am I kidding?  Writing forced me to stop crying long enough to focus on the screen, diverting my full attention from the diagnosis.  Writing saved me then and does still, and nobody reads this anyway.  Rest assured that if Ed Robertson or a member of his or the band’s legal team ask me to cease and desist, I will.

I DO steal words all the time.  Don’t you?  None of us owns language, and few of us express truly original, never before heard ideas in 2015.  I don’t consider myself a plagiarist because the content of my rants posts is developed in my head and heart, and I pull from the only lexicon I know.  The worst part of this freaking tweet is that I didn’t put a period at the end of the second sentence.  Dammit, @schwinngirl20!  See?  I suck at Twitter.  Here are a few things I wish like hell I had written, but instead, have STOLEN for inclusion here.  Because apparently thieving is how I roll–

  1. This post title.  Not the thievery part; that’s just an ordinary word, people.  The NASCAR part was a gift from my boss, and as she said the words, I whipped out my phone, typing the title of a post I knew I’d develop some day in the near future.  According to her, it’s a reference to scrapbooking.  I don’t craft (yesterday’s news), but I know from others that scrapbooking can be damn near bloodsport for those who do it well.  I can’t speak for the nation of scrapbookers, and I seriously doubt they’re all caucasian and overweight.  See?  Stereotypes are dangerous, everyone.  But these words strung together in this order belong to someone else.  Sue me.  Actually, please don’t.  I took a huge pay cut a few years ago, and seriously have not recovered financially yet.  The title is apropos of absolutely nothing.  No need to dig here.
  2. This card.  It came in the mail this week from my best friend and I LOVE it.  And her. 
  3. These words from my dear friend in the form of an email follow-up to my previous post.  I love her.

    We might not have met earlier in life but we found each other when it mattered. . .  As for your son I remain quiet because I don’t know what to say. But here are my only thoughts on it. He has you. And you have him. And if he needs anything right now it is a kick ass mom that will fight for him to have as much as a normal life as possible. And I think that’s why you guys were brought together. Because he was going to need someone like you down then line. And he has it.

  4. Furiously Happy, by Jenny Lawson, a writer whose words matter to me.  I haven’t even read it yet, but it’s perfect, I know it is.  Hers was the second blog I’d ever read because a friend recommended this post to me. The first time I read it, I laughed so hard I woke up my entire family.  I’ve recommended it to anyone who will listen, and have received no fewer than seven Beyoncés as a thank you for the recommendation.  I’m going to my first book signing next week to hear and meet her.  I’m not super smooth around famous people, and I’m nervous.  BUT I have long said that we should tell people who mean something to us that they mean something to us, so I’m pulling up my big girl panties.

I think that about wraps up my mea culpa.  Anyone who knows me knows any theft of any type I may or may not have committed is purely coincidental.  Any resemblance to real persons, living or dead, is unintended.

It’s Starting to Sink In Now

Hearing my husband utter these words was almost more devastating to me than the experience of feeling and living them myself.  The phrase “shit’s gettin’ real” always makes me giggle because, hi, I’m 12, but this time and in this context, it’s not so cute.

Monday’s neurology appointment wasn’t the worst ninety minutes of my entire life.  I even made it all the way home before ugly crying, which is some kind of fucking victory right there, people.  It’s possible I misted up a time or two during my son’s functional assessment, but I covered my tears like a boss because I am the mom.  The for reals tears didn’t come until I relayed the information to my husband later that evening.  Watching his face soften visibly as the wheels of acceptance turned inside his head kinda broke my heart.  It’s been obvious to me that I’ve been more the realist, the pragmatist about our son’s diagnosis.  Not that my husband is in denial, not that, no.  He’s just been less diagnosis-focused than I.  We cope with things very differently, Tom and I do.  Generally speaking we complement one another well.  Match.com or eHarmony would NEVER have connected us, I mean really, we had but one single CD in common when we met (Cheap Trick’s Greatest Hits for those of you with inquiring minds), but we make a darn good team.  I’m the fly-off-the-handle one–I know, right? shut up!–and he’s the guy on simmer.  My husband is super-cool until he’s not, and then he’s Pissed with a capital P right now, no lead-up.  That unpredictability can be challenging, but it’s so infrequent it’s almost not a thing.  My periodic explosive nature is of more routine consequence.  Hearing him say “It’s starting to sink in now” stabbed my already breaking heart, and there ain’t duct tape long or strong enough to repair it.

Neurology is concerned about gait.  Because his hips are already compromised, my son’s gait is lumbering, atypical–he looks a little different already as he walks.  The DNA test results haven’t been returned yet, so his team of docs hasn’t formally announced which subtype of LGMD he’s got.  I am certain they know, but aren’t yet spilling the beans to us until they can unequivocally label it Axis Whatever The Hell It Is He Has.  As I observe them observe my son and ask him to execute very specific tasks in these functional assessments, I know they know.  That’s what made this appointment hard–the look ahead.  It’s already ahead.  *sigh*  Shit.  We started the impossible conversations, the would ya rather? conversations, the “is it better never to have had something at all or better to lose it?”  As I age, I am fucking irate at things that have become more difficult for me.  I fume when I can’t recall labels of things, you know, super hard and rare words like cabinet or tomato.  It’s aggravating not to be able to run as hard or as long as I would like because my hip pain is blinding.  These insufficiencies are typical of plain old getting older and I can’t stand it.  I’m imagining my son’s ahead. . .  looking ahead, among other losses, he will lose his ability to walk.  The frustration I can’t bear after forty-eight relatively good years health-wise will pale in comparison.  We didn’t spend much time on the impossible conversations.  It’s a futile, foolhardy exercise.  And I KNOW he can still walk right now and we just need to celebrate that and we need to just be positive and we just need to be grateful for that and we just need to help him understand his disease and I swear to the stars that anyone directing me to just do anything is in line for a sternly-worded email!  I KNOW.

In other news, it’s my big kid’s birthday today, and he is so, so excited!  His class went on a canoeing field trip today.  I’m borderline terrified, but to this hour I’ve not gotten the “come get your kid, he’s capsized his canoe” phone call from his teacher, so I’m pretty sure he is still among the living and with any luck, among the dry.  Happy birthday to my dear, dear boy.  How do I love you?  It’s greater than gravity, kid.  2015 made you taller than me.  2015 handed you a burden most people, your own mother included, can never understand.  2015 forced you to search within and find strength you never knew you’d need.  You’ve made me a better person through all this, and for that I can say I am grateful.  I love you, big kid.