Mom, Am I Gonna Lose My Walking?

Aaaaaand now I also hate physical therapy. And Children’s Hospital. And my husband just a little right now. 

There are days at the hospital where patient traffic, for whatever reasons, runs a higher volume than others. Today must be a high-census day because we encountered more really messed-up kids than we do otherwise.  Please don’t start–don’t tell me I should be grateful that my son doesn’t have something really bad like cancer or some horrifying burns or terminal metabolic disease, that he’s lucky it’s only muscular dystrophy.  I KNOW THIS. I fucking hate it–all of it for all the kids at Children’s Hospital –and I’m a decent enough human being to acknowledge that other children and families do have it worse. I’m not being cute in referring to these children–children!–as messed-up. They are.  Or rather, their diseases or disabilities are.  That any child should suffer is so unfair, and the term unfair only barely, minimally, ineffectually scratches the surface of that injustice. 

One of his PT’s goals is patient education, helping my son understand his disease and its effects. MD is progressive, but you don’t get a timetable in your welcome package (you do in fact get a welcome package though, like I’d make that up!).  Debilitation doesn’t follow an itinerary, nor is it one-size-fits-all. You wake up on Monday and go, “OK Monday, whatcha got?”  I imagine tomorrow wil be, “Hey Tuesday!  Whaaaat’s up?”  I don’t know what my son’s 11-year-old brain is digesting regarding MD. MD isn’t the only thing we ever talk about, it can’t be! Today though, as we wove through the wheelchair parade at Children’s, my son looked at me and asked, “Mom, am I gonna lose my walking?”  He too noticed the high census, but mercifully did not notice my gasp. I’ve said this before, but you only get about 2.2 seconds to run this through your head and formulate a cogent response. You blink back tears, cross your fingers and hope to the stars and back your answer is right, but it’s so way beyond wrong:  “Yeah, my love, quite possibly, yes.”

My husband is off today, and I was happy that he’d be home when we got back. I kinda needed a hug, you know?  Instead, when I relayed my son’s and my exchange, he says, “You can’t tell him that.”  What??  Yeah, yeah I can, because anything else would be bullshit, and I am not going to lie to my kid. Not about this. Not about something he needs to trust me on because his life depends on it. I do most of the parental heavy lifting, I get most of the hard questions, and every so often I just want to share it. Not with my son’s father, not today I guess. Sorry, friends, you get to be my sounding board today. Thanks for being there. xoxo

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6 thoughts on “Mom, Am I Gonna Lose My Walking?

  1. I am so sorry. All of this fucking sucks…all of it. Your response was definitely what it needed to be….loving honest. Some questions are tougher than others but you were right in telling him the truth when he asks for it. Thinking of you today, and many other days too my friend.
    Ann

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  2. Sweetstimes ^ took the words right out of my mouth. It fucking sucks. It blows. It blows monkey nuts (something we said in Jr. High and seemed appropriate here). I also believe you were correct in telling him. And it did it in the most loving way that only a mother can. If you ever doubt yourself, remember this: YOU ARE DOING A FUCKING GREAT JOB! XOXO

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  3. As I’m fond of saying to my kids, “honesty is always the best policy even though it’s sometimes really difficult to be honest”. I’m certain that, as much as it sucks, one day your son will look back on this conversation and be grateful that you were honest with him. Keep being the awesome mom that you are!

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  4. Loved this piece. It made me cry. Learning to live with muscular dystrophy has changed me for the better. You, your son, and your entire family are facing chronic challenges. The way you handled all of it is commendable.

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    • Thank you so much for reading and taking the time to respond. There’s no manual for any of this parenting stuff–disease-related or not–so I try so hard to get it as right as I can, all the while knowing I’m screwing it up more often than I care to. Hearing something positive from you means a lot, and I appreciate it, Rose. I am happy I found your blog–I’ve got a lot to learn from you.

      Liked by 1 person

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