My Kid’s Not Beating the Odds, and That’s Fine

This evening, I read a wonderful post at the blog, What Do You Do, Dear? Mary Evelyn, who happens to live in the best city in America (hello, Columbus!), writes about raising a child with spina bifida. In her post, “Standing is Stupid,” Evelyn describes mixed feelings when her son Simeon first stood. She snapped a photo of him in his new leg braces and then posted the photo on Facebook. Soon after, her mother called, delighted, reporting that ‘Everyone is so excited…”

But Evelyn says she felt panicked. I don’t want standing to be important, she thought. Here’s Mary Evelyn:

“I was afraid that the world would see Simeon as a failure if he wasn’t the exception to the rule of his diagnosis. It seemed that everyone believed my son would have to stand up and walk—to ‘beat’ his disability somehow—in order for our situation to not be ‘so bad.’”

I nodded when I read this. Fiona walks now, which is wonderful. But as she toddles around, arms reaching out, feet slapping toward something that interests her, I’m noticing a narrative creep up around her. It’s not pervasive, but it’s present. It’s crafted by well-meaning people, people who adore Fiona and enjoy cheering her on. Sometimes these people insist that Fiona has “beaten the odds.” That she has “really shown those doctors, who underestimated her.” That her walking “is a miracle.” Isn’t it a miracle, they might turn to me and say, smiling.

[Image description: Fiona blurring by in a striped tank top, green tutu, and jeans.]

[Image description: Fiona blurring by in a striped tank top, green tutu, and jeans.]

But in walking, as with many things, Fiona hasn’t beaten the odds; she’s been living smack inside them. Odds were about 50/50 that she would walk. And while we are all super grateful that she can walk, well, thems just the odds. Also, the timing of her walking is on-par with many of her peers. As this uber-academic article on Wolf-Hirschhorn syndrome says, “Those, who are able to walk, [typically] learn it between the age of 3 and 5 years.” This isn’t always the case, and people with Wolf-Hirschhorn syndrome have learned to walk well into adulthood; but many kids seem to learn at about age 4, just as Fiona did. To boot, I’ve always been up front that Fiona’s diagnosing doctors weren’t naysayers. Although plenty of parents describe horrific first encounters with doctors, somehow my husband and I escaped that fate. Her diagnosing geneticist was honest, open, and encouraging. He encouraged us never to put limits on her, to let “Fiona be Fiona.” (She was three months old. Look at Fiona Being Fiona then! So onyx-eyed.)

[Image description: Baby Fiona, in a blue-piped tank-top, lying on a blanket and looking wistfully off to the side.]

[Image description: Baby Fiona, in a blue-piped tank-top, lying on a blanket and looking wistfully off to the side.]

So where does this narrative come from? That my girl has somehow become the exceptional example? Proven all those doctors wrong? That walking makes her an unbelievable triumph? It’s not coming from Fiona or me. It seems to be sprouting up around us like grass, a blade or two here and there.

I think it comes from people’s desire for inspiration. I think it stems from people’s yearning to see life fit the crescendo of a Hollywood movie. I think it illustrates the expectation that life’s natural trajectory should arc toward trophies. This doesn’t especially bother me; I get it; I’m a sucker for underdog baseball movies, too.

But in this case, the “beat the odds” narrative imposed on Fiona exposes the belief that triumph cannot possibly occur in a wheelchair. That triumph occurs when the disabled body becomes less so.

And this is where I get uncomfortable. Because if my daughter experienced the world in her Zippy wheelchair, which her physical therapist ordered a year ago and which weighs zilch and turns on a dime and is the most pristine, impressive machine in the house, she would still rock this life. Just as plenty of kids with Wolf-Hirschhorn syndrome rock their lives.

[Image description: Fiona smiling in her wheelchair, holding her left hand in a mudra.]

[Image description: Fiona smiling in her wheelchair, holding her left hand in a mudra.]

The belief that “a more able-bodied life is more triumphant” also makes me uncomfortable because my daughter is still living in a disabled body. A body that exists far outside the charts. A body that cannot speak more than two words and that struggles to separate her fingers and that wavers when she stands, and sometimes falls. And she will still rock this life.

Mary Evelyn ends her blog post by rewriting the advice she got when she was a new mother. People said things like, I know someone with spina bifida—and he can walk. Or, I know someone with spina bifida—and he plays soccer. She vows to give different advice. To new parents, she’ll say, I know someone with spina bifida and he’s got a great sense of humor.  I know someone with spina bifida and he’s got a lot of people who love him.

These, these are things people need to hear. Not, Don’t worry, your kid might not be so disabled, which reveals itself for the well-meaning but ableist comment it is, propping faith up on the shoulders of bodies that don’t do things like walk or play soccer. Instead, we can remap the triumphant plot. We can run off the race’s course, skip the finish line, and zigzag toward a field of something wild and blooming, reminding ourselves of what matters in this world.

To take a note from Evelyn, here are mine:

I know someone with Wolf-Hirschhorn syndrome, and she charms the pants off anyone in the room.

I know someone with Wolf-Hirschhorn syndrome, and she coos with love during morning snuggles.

I know someone with Wolf-Hirschhorn syndrome, and she might just be the best thing that’s ever happened to me.

[Image description: Fiona in a green outdoor sandbox, smiling, looking straight into the camera.]

[Image description: Fiona in a green outdoor sandbox, smiling, looking straight into the camera. She’s wearing turquoise jeans and a floral shirt with a pink flower on her chest.]

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20 thoughts on “My Kid’s Not Beating the Odds, and That’s Fine

  1. Kaylee is far behind her like – aged peers in her development. I still internally cringe when people tell me how they saw a video or photo I posted and how excited I must be because she’s “doing so well .” I always hesitate, which many people interpret as indifference. They want to hear me be excited…and I am…somewhat. Truth be told, I know that the photos/videos convey a momentary glimpse of an act that often has not transferred into a learned behavior- one of consistency. Hence, I feed my Facebook friends with those messages of hope and inspiration, then feel guilty when “caught” because they want to know that what they saw was a sign of Kaylee “beating her syndrome”. Thank you for such a soul – touching post; it was good medicine this morning. ♡

  2. I LOVE your blog, and even more; I LOVE your view of your child and parenting! I was introduced to your blog by an SLP friend of mine. I was intrigued and thrilled by how you integrate Fiona’s AAC device into the mess that is a young child’s life. Too many people try to keep the devices pristine when the rest of a child’s life is covered in yogurt. Today’s blog touched my heart. I pray that I can share these beliefs with the parents of the children I teach. Although as SpEd teacher I always feel that I must strive to help kiddos reach their highest possible potential, I want to remember that true success is the love and joy of living. Our current society seems to need a reminder that this isn’t Lake Wobegone, and we don’t all have to above average. Thank you for sharing your daughter and parenting challenges with all of us.

    • Oh yes, Fiona’s talker is regularly covered in crumbs and caked in yogurt. Thank you, A.N., for doing what you do! I’m glad to know you’re out in the world, supporting kids and their parents.

  3. I know someone with SMA and she is changing the world as a teacher in her inner city classroom and on her mission trips to Uganda. She is my daughter Katie.

    I know someone with SMA and he has won a world cup and a national championship in power (wheelchair) soccer and just graduated cum laude from Arizona State University. He is my son Jordan.

    I know someone with SMA who is sixteen years old and owns the room when he rolls into it. People love to be around him because of his heart and his sense of humor. He is my son Zachary.

    My wife Peggy and I have 3 children with SMA and they are the best thing that has ever happened to us. Oh yeh, and they are in wheelchairs.

    Thank you for your blogpost. It beautifully says what we have tried to teach our children and now, as they grow, we see them teaching others.

  4. Excellent article, you hit on so many important points. Your writing is amazing! You add important depth to the ableism discussion.

  5. Thank you!

    Being disabled myself, ableism is a HUGE problem I run into. I actually just wrote a blog post about an ablest comment that was made on the airplane earlier this week.

    So often, we (general we for disabled people) are told we defy odds. That oh, I know someone with crutches just like yours and they climb mountains and run 5Ks!

    Anyway, you added a great depth to this and I’m so glad If found your blog!

    • The Frozen Spring, I regularly hear from my friends with physical disabilities that airline travel is a special brand of humiliation, typically capped off with damaged equipment. I’ll go find your blog post…

  6. Yes. Beautiful and true. I think it’s possible “the odds” that the well wishers are thinking of are what they thought the odds were/are. People who don’t really *know* someone differently abled sometimes have a hard time really getting that no one’s really normal, anyway. ‘Course I’m not telling you anything you haven’t learned form your sweet girl.
    Back to the short version – Love this. Cary On. 🙂

  7. Great post. I have an adult son with multiple disabilities. I like to view our support of him as helping him “to become the person he is meant to be”, whatever that will be.

  8. Thank you for so graciously sharing your journey. You’re a beautiful writer as evidenced by the emotions and images they cause me to experience. Fiona, your mini-me, is such a cutie patootie! Which of you two dolls picks out her outfit for the day? Fiona is stylin’!! 🙂 Also, the education, both medical and life lessons you layout in each posting have caused me to be, what I hope is a better person. Thanks bunches!

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