A Funny Thing Happened on the Way to Being a “Special Needs” Parent

So this past weekend, I was driving the car, listening to the Moth story hour on NHPR and feeling lucky. I love the Moth (true stories told live). Hell, I have a story I want to tell the Moth. (The Pringle Fairy.) But mostly, I love that what I expected to be a chore—a half-hour’s drive to a sleepover for Lily—was going to be a pleasure.

Double amputee, athlete, actress and over-achiever Aimee Mullins was telling a fantastic story, about how she didn’t just “come to terms with” her artificial legs but began to love them, to truly love them, and demand that they over-achieve right along with her. It was fantastic, a great listen (available on a podcast, too). She’d just reached a moment when a little six-year-old girl born with one leg dramatically shorter than the other came up to her and told her about how she (the little girl) just flat out demanded that her parents have her short leg amputated so she could have a “better leg.” She was so impressed that the parents had done it, instead of pushing the girl to try to use her short leg and feel limited. They’d said, yeah, get a better, totally different leg and make it yours! ANd that little girl didn’t get some fake-real looking leg. She got a hot pink leg with pictures of High School Musical on it.

Wow, I thought. I hope that if I ever have a kid who needs that kind of support in being different, I’d be that parent who helps her see that her difference is just one of the many fantastic things that make her who she is.

And then the little nagging voice that had been tugging at my mental shoulder as I had that thought whacked me over the head with a two-by-four and said, DUDE! You DO have a “special needs” kid!

Oh yeah.

I’d forgotten. Completely. Rory doesn’t have a limb difference (or I’m sure I’d have clued in long before), but China, at least, thought her “difference” (which at the moment amounts to nothing more than a scar and some orthodontic and speech issues) was worthy of singling her out. Before she came home, I was hyper-aware of it. I examined that scar in every photo. Once she got here, I worried about it. How much did the cleft affect her speech? How did if affect her appearance? Would she want to have plastic surgery when she got older, to lessen the scar? How would it impact her life?

And now, two years later, I can honestly say I can’t remember the last time I even saw the scar, if you know what I mean. I’m aware of Rory’s cleft, of course. I was just considering how it might impact her sinuses last week, and she goes to regular speech therapy. But I just never think about it, except in those contexts. I don’t think I deserve a medal for this. I think it’s the way every parent of a kid with a physical “difference” is in moments when the “difference” isn’t brought front and center by some outside influence. I just hadn’t realized it had happened, or that it would be so complete.

Again, I don’t think I’m special. But when we adopted Rory, I think my expectation regarding her cleft and scar was that I would still see it, I just wouldn’t mind it, by which I don’t mean “mind” in a bad way. To get all meta on you, I thought that I would notice myself not noticing it. Which I guess I have, now, but I thought I would always notice not noticing it. I thought that I would be constantly aware of not looking at or not noticing her scar in a very used-to-it kind of way. I know that’s a very amorphous statement, and I hope it makes some sense. I never thought the scar or cleft would “bother” me. I just didn’t realize that eventually you really just don’t see it.

Rory is only six, so her face isn’t something she spends a whole lot of time thinking about, unless you apply a sparkly butterfly or a skull tattoo to her cheek. But I would like to admit, right here, that I really used to expect her to come to us, relatively early in her teens, and ask if there was anything that could be done to make her lips more perfect—or rather, more “normal.” I figured we’d just help her to do that.

Now, when I look at her, I just see … her. I can’t imagine why she’d feel the need to do anything to her lips besides put on some lipstick and rock them. Or rather, because I’ve been a teenaged girl, I can, but only in the same way I can imagine any teenaged girl being dissatisfied with any one of her features. Rory’s lips are fantastic! Her nose is fantastic! It’s her!

So I feel like I have just a tiny glimpse of the way Aimee’s parents, and that little girl’s parents, felt all along. Once upon a time, when I complained about whatever (I actually have a huge scar down my back that I never think about, so this is all a little ironic) and my mother said oh, honey, you’re perfect the way you are, and however you are, I figured that was just what parents had to say. Now I know the truth. We really mean it. We don’t even understand how you could think anything else.

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