Sarah Sweatt Orsborn

@sarah-sweatt-osborn | contributor
Sarah Sweatt Orsborn is a writer living in Little Rock, Ark., with her husband, Jon, 2-year-old, twins Etta and Claire, who has Spina Bifida, two dogs, Bessie and Olive, and one not-so-Tiny cat. Her writing is most frequently found on her site, erniebufflo.com.

When Child With Spina Bifida Notices They Are Different

We’re sitting on the couch. Claire reaches up her dimpled hand and touches the knot just behind her right ear, mostly hidden in her loopy white blond curls. “I have an ouchy.” “Oh baby,” I say, “that’s not an ouchy, that’s your shunt! You have that because you have Spina Bifida. Your shunt helps your head feel better.” “Oh,” she says, “I have a buckle on my head.” I knew it would happen eventually, but Claire has started noticing a few of the ways in which she’s different. Actually, really, I’m sure she’s noticed before now, but she’s just now able to start talking about her differences and asking questions about them. Most of the time, like the incident above, I just give a matter-of-fact explanation on an age-appropriate level, and we move on. She doesn’t have theological or philosophical questions about why she has a shunt bump on her head, or why she has braces or why she uses a catheter, though I’m sure eventually she will. Maybe by then, I’ll have some philosophical answers too. But for now, and for always, Spina Bifida won’t be some big thing. It’s not a defining struggle. It’s not even something we wish away. It just is. It always has been. It’s part of Claire, and while it may affect her in big and small ways, it’s just another way of being a person in the world. I’m glad she’s a questioner. Her mama is too. I know she’ll know soon enough that her mama doesn’t have all the answers. I hope she knows that’s just part of being a person in the world, too. Here’s what we want her to be most aware of: she is whole and complete, just the way she is. She is beautiful, smart, charming, witty, stubborn and strong. She can sometimes be a total pain in the neck. And we wouldn’t have her any other way. So throw those questions at us, kiddo, and we’ll figure all this out together. This post originally appeared on The Adventures of Ernie Bufflo.

How 'Frozen' Taught Me About Disability and the Power of Sister Love

My kids are only 2, so I’m still not fully in the loop of kid-culture. “Frozen” largely stayed off my radar during its run in theaters, because I am NOT crazy enough to take these two to a movie in a theater yet, and I didn’t even see trailers because we don’t have cable and they don’t show ads for movies on Hulu very often. I’d see posts in my social media feeds from moms of older kids complaining about watching it for the umpteenth time or having the songs stuck in their heads, and I even saw a few videos shared that related to the film, like those self-declared good-looking parents lipsynching. (Tip: unless you’re Derek Zoolander, never talk about how good-looking you are.) All that said, the other day we bought “Frozen” and tried to watch it as a family. The girls had a long, late nap that day, so we were looking for a low-key evening activity. And I’d been kind of curious about a movie I heard was about two sisters — I have a sister and am raising a pair of sisters and YAY SISTERHOOD, you know? I popped popcorn, and all four of us snuggled on the couch, and we pressed play. Elmo? the girls asked. And kept asking. Basically, through the entire movie they wanted to know where the heck Elmo was, and if Elmo wasn’t in this movie, why were we watching it at all? We didn’t even finish before putting them to bed. But I caught enough of the movie to dig a fairly feminist message of sisterhood and familial love being as strong and important as romantic love, and I knew I wanted to really watch the film, despite my distaste for Olaf the Abominably Annoying Snowman. So the other day when the girls were napping, we watched Frozen again. And upon this viewing, I noticed something different. I started to see a disability narrative where I hadn’t seen one the first time, perhaps because I was distracted by all the demands for Elmo. As I watched this time, I started wondering which of my girls was Anna and which girl was Elsa, the same way my sister and I used to say, “I’M BELLE!” back before anyone needed a Buzzfeed Quiz to identify with a fictional character. And it occurred to me, my little white-blond Claire is Elsa — not just because of the hair, either, but because of Spina Bifida, too. Like Elsa, Claire was born with something that makes her different. Something that has risked her life, something that many might think she should be ashamed of or at least try to conceal and minimize as much as possible. Like Elsa, Claire will have to learn how to live with this difference and will perhaps grapple with it, struggle against it, though I hope she will not. I hope she’ll accept her whole self as a whole person, and I want her to see her disability as just another way of being a person in the world, but I do know that like any other part of ourselves that makes us different, she may struggle a bit before she decides how she feels. Elsa, for much of the story, has the idea that her difference is something that must be hidden, that is dangerous to others, that is a barrier to her participation in both family and work life. Notably, this is something she is taught, as at first she plays around with her powers and sees them as a way to connect with her sister. I never want Claire to get the idea that her difference is something to hide. “Conceal, don’t feel” could basically be summed up as the opposite to my philosophy on identity and self. I admit that I worry that difference will come between Claire and Etta, that one will resent the other either for being able-bodied or for requiring more care and attention, just like Elsa’s powers come between her and Anna. I also must say that I hope they realize the bonds of sisterhood and family love draw them closer than any difference could ever separate them. Maybe one day, when my girls are a little less Elmo-obsessed, they will be able to watch and identify with Frozen. I hope they don’t get caught up in who has power or who is different. Instead, I hope they understand that for both of them, able-bodied and disabled, the things that make them different are essential to who they are and that the love and the bond of twin-sisterhood between them is stronger than any difference could possibly be. I’d be fine if they avoid cavorting with annoying snowmen, though. This post originally appeared on The Adventures of Ernie Bufflo. Meet more Mighty families. Like us on Facebook.