“I Think He’ll Be Just Fine”

Things not to say to a mom whose kid has muscular dystrophy, Volume 8,394:  I think he’ll be just fine.

Well-meaning perhaps, but I feel like maybe just maybe, the dude with MD chasing his name holds a morsel or two more of information than you. It’s nice that you want him to be just fine.  For the record, I want that waaaaaaaaaay more than you do.  Way more. Way fucking more.  But when you tell me you think he’s gonna be just fine, that maybe it’s not going to be so bad, honestly?  It just pisses me off.

It forces me to feel like I have to teach you about two key vocabulary words in my life: 1) progressive, and 2) neuromuscular, and then I look like the asshole or Debbie Downer when you’re all smiley and stuff in your false optimism, and my response becomes a treatise on etymology.  Let’s discuss:

  1. pro·gres·sive /prəˈɡresiv/ adjective
    happening or developing gradually or in stages; proceeding step by step.
  2. neu·ro·mus·cu·lar n(y)o͝orōˈm/əskyələr/adjective
    of or relating to nerves and muscles.

So his disease, relating to nerves and muscles, you see, is developing gradually (which technically sounds inaccurate because MD’s effects are not about developing, but declining).  You can sing Sunshine Day á la the Brady Bunch all you like (RIP Florence Henderson), but the actual fact is that my kid is losing functioning over time.  It’s not going to get better.  There’s no cure.  There’s no medicine–oh, well there is medicine for pain management when that becomes necessary for him, and the thought of this is just about more than I can manage, y’all.

And then you ask me something you think is innocent enough, just a curiosity, but it makes me feel a little like I want to claw my eyes out.  I grin politely and nod as people do in polite conversation as you keep speaking.  I look completely normal as I bite the insides of my cheek so hard that I taste the faintest trace of copper.  I look at you strangely and shake my head as if coming to from a daydream.  You think I’m spaced out or have lost my train of thought, but I realize that my “restraint” has led me to draw blood.  Better mine than yours, right?

Thank you for your optimism.  It’s lovely, really lovely.  But it’s not realistic.  Hold on to your rose colored glasses while I park my unicorn over here.  I’ve got to collect my covey of puppies and daisies before I continue.  *clears throat*

Do not, do NOT tell me he’s going to be just fine (I’m clenching my teeth here, not yelling though, can you hear my tone?).  I know he is going to be just fine–he’s going to be the very best damn version of him the world has ever known.  Don’t tell me because your kid is totally typical, mine’s gonna be just fine.  You never have to wonder precisely which day it will be that your child loses his ability to walk.  I do.

It’s not that my boy’s disease is some type of obsession or all I ever ponder; it’s not. (Editor’s note:  Honestly?  It’s never not on my mind on some level, but I don’t spend every moment thinking worst case scenario, plus we all know I have fun things over which I do obsess.  I mean celebrate a “concentrated hobby.”  Ahem.)  But when you corner and quiz me with a ridiculously vacant grin on your face, you force me to think about it.  It is something real.  Our reality is different than yours (and really, thank the stars for that!).  You haven’t had your January 21, 2015–your day that marked a before and after–and I hope with the fire of a thousand suns you never do.

He is going to be just fine, just not in the way you imagined for your kid.  That’s OK.

Tomorrow’s his semi-annual neurology clinic appointment, and I’m just a touch on edge.  I know it’s hard to tell, right?  wink-wink, nudge-nudge Watching your kid get put through the ringer of functional tests is tough.  It’s one thing to know it, and quite another to know it.  Last time I hardly cried at all, and I considered that a major feather in my cap.  Were I to wear hats, that is.  I’m really more a headband or earmuff kind of gal, but I digress.  For some reason I feel certain that waterproof mascara is the order of the day tomorrow.  Send up a good thought for us, will you?  xoxo

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8 thoughts on ““I Think He’ll Be Just Fine”

  1. You had me crying while I read this post. As someone with MD, I can relate only too well. For me, the most difficult comment is, “You don’t look sick.” Well, what am I suppose to say to that? “What does sick look like?” My daughter tells me that “the problem” is that I keep myself well-groomed (no sweatpants and sweatshirt for me). I can no longer dress myself (or even fix my hair). So, it takes two of us to get me ready. (Sometimes I am exhausted before we leave the house.) One time, a stranger in a grocery store walked up to me and said, “You don’t look like you need a wheelchair. Now, my husband, he needs one.” After which, she calmly walked away with her arrogance shrouding her from the reality of her ignorance. I sat there too stunned to say or do anything. (It took extreme amounts of self-control not to confront her when I saw her later on.) All this to let you know, I think I understand. Nothing I can say will make it any better for you. In fact, I may have just given you a glimpse into what your son might encounter along the way. Still, I am with you in spirit Wendy. Someone out there (me) truly gets it. And, it won’t be just fine, but he will be fine because he has you to support him.

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    • Apparently there is no limit to humanity’s desire to judge others and make assumptions about them to fit their own belief systems. There’s also no limit to humanity’s paucity of common decency and blathering either. I cannot believe someone would dare say “you don’t look like you need a wheelchair” to you! I’m so angry for you, while at the same time impressed with your restraint. Lashing out would likely have done little good, which you were wise to recognize. I’m positively amazing with my snappy comebacks (later on when I’m alone and have stewed over it for too long though!). I remember thinking on “the” day that I was going to learn a whole new language and meet people I didn’t want to have to know because of MD. I am so happy I have come to know you, Rose. MD or not, hearing your perspective and that of several others with MD has left me a more thoughtful, considerate person as a whole, not just a mom whose kid has MD. Thank you so much for taking the time to read and respond. Sorry I made you cry though. You do get it.

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  2. People just suck sometimes. I’m sorry you have to deal with their ignorance along with everything else you have going on with your son. Sending good vibes your way. I’ll be wearing water proof mascara too in silent support of you both.

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