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