I saw a note on Facebook about a local teen missing graduation because he just got a heart transplant. "Thank God he's going to be all right!" is the general gist of the comments. People have no idea at all how difficult this child's next year is going to be.
People are generally kind, and mean well overall. But as the parent of a chronically ill child (and the wife of a chronic pain patient), I've come to the realization that many people really don't quite "get it" when it comes to what the word "chronic" actually means.
When people learn of Babygirl's kidney failure and subsequent transplant, the commonest response I hear is, "So she's fine NOW, right?" It's like the question I was frequently asked when she first needed dialysis: "Is it BOTH of her kidneys?" Neither of these questions make sense to me, as a doctor. As a special needs parent, even less so.
"Yes, she's fine unless you're concerned at all about the anti-rejection medications that supress her immune system and make it possible for her to get very sick very quickly and increase her risk of getting cancer. And transplanted kidneys only live about 15 years on average." "You mean she has to take those meds for the rest of her LIFE??" Well....yes. At least until the current kidney fails and she goes back on dialysis and waits for another transplant.
The same thing happens to Hubby. "You mean the surgery didn't fix your back?" Well, it un-paralyzed his leg, so he can walk again, but his back will never be okay - that really wasn't what the surgery was for. He gets asked this so often (and honestly, by the same people over and over) that he doesn't even want to go out. He's tired of talking about his back. Ask him about the Rumble Ponies or something for crying out loud.
I read this article recently: The Isolation of Special Needs Parents. While the author appears to have a child with considerable physical disability, it applies to us nevertheless. The part about not being able to REALLY talk about it without sounding as if you have no joy in your life, or don't want to be that child's parent, is very true. "How's Babygirl?" "She's doing fine, thank you." is commonly the extent of my conversation on the subject. I get tired of explaining that she isn't fine in a hundred different ways, and that I'm not always fine with THAT. Being able to tell truly supportive folks from emotional ambulance chasers has become an art form.
I belong to a group of kidney kids' parents online, and the support is pretty amazing. Where else can a parent toss out a question about the color and quantity of their kid's pee and get a real answer? Who else can you ask, "Did your kid ever take this medicine? What happened?" Where else can you go for a list of what you need to pack for a long hospital stay?
It's been more than seven years since she was "all right." We're just doing as well as we can.
Pray for that teen with the new heart. Pray for his family, for strength for the journey ahead of them.
DeeDee
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