When My Daughter Starts to Notice She’s Different, This Is What We’ll Do

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.”

(Photo: Sarah Sweatt Orsborn)

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.

By Sarah Sweatt Orsborn

3 thoughts on “When My Daughter Starts to Notice She’s Different, This Is What We’ll Do

  • December 16, 2015 at 11:33 PM
    Permalink

    Way to go! At age 3 I had Polio ( known as Infantile Paralyasis in 1928. My right leg was almost made useless. I have lived as normal a life possible. I did just about everything I wanted in spite of the full leg brace I have worn the last 87 years. WHY? I was treated just like all other children. No favors no extra help. Continue the way you are and this young lady will surprize you

    Reply
    • December 17, 2015 at 8:23 PM
      Permalink

      Fred May, you and this beautiful young lady are both amazing. I love a can-do attitude. THAT is what makes both of you stand out in a crowd. I hope your family is as proud of you as Claire’s is of her.

      Reply
  • December 20, 2015 at 12:28 AM
    Permalink

    oh baby I am so sorry I had the same problem I had cancer when I was two years old and the doctors had too put one in my head and I am still living with it today keep your head up 😉

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *