My Daughter Has 1 Thing In Common With Barbie Due To A Rare Condition. Here’s What I Want People She Encounters To Know.
My 11-year-old daughter oscillates through the space around her, trying to find center. Like Barbie, she balances on the balls of her feet. She always has.
For years, the question was why. Then, the diagnosis affecting 5-10% of children: idiopathic toe-walking, or toe-walking with no known cause. But I can’t ignore her history.
Born at 23 weeks, 12 inches long, and 1 lb. and 7 oz., her lower leg the width and length of my pinkie, her foot smaller than the tip of my thumb to the first joint, she had a 5% chance of “intact survival.”
Wildly, Pisces — her “accidental” birth sign since she was born four months early — is associated with feet. Barbie, whose birthday is March 9, 1961, is also a Pisces.
If born on her due date, my daughter would be a Gemini — the twins. The day before her birth, her twin brother’s heart stopped beating in utero. I imagine them in my belly, toes and fingers reaching out to each other through thin walls keeping them apart, suddenly blasted through the astral plane, the timing all wrong — his hold ephemeral, her landing only partial, her grip tenuous.
“It’s always the first thing everyone notices about me,” she says.
At school, a line of kindergarteners watch her feet as she crosses the cafeteria. One of her fifth grade classmates interrogates her; another kindly asserts that it would be as hard for her to walk on flat feet as it would be for most kids to spend all day on their toes. The school nurse suggests that she try putting her heels first, as though the idea were new. Many adults have ideas — and no qualms about sharing them.
She tells me that she doesn’t want to walk on her toes anymore. She ponders why she does something that she can’t help that causes her to stand out. I wonder if this is a physical issue, a social issue, or an inextricable combination of the two.
In her toddler years, I cued “walk flat” or “heels first.” When that seemed to embarrass her, I shifted to a shoulder press. Through the long tunnel of time, my wrong thinking is obvious, the accumulation of these cues a judgment: The way you move is wrong. Change.
She wants to try cotillion. In an attempt to protect her from unwanted attention, I email the woman in charge of the Saturday evening dance lessons to say my daughter has a medical condition.
After the second dance, my daughter rages, “That was the most humiliating night of my life!” In front of her dance partner, a boy in her grade, one of the “helpers” told her dancing would be easier if she put her heels down.
Fiddling with the pumps of her Barbie that never stay put, an idea springs to mind. Before next cotillion, we head to Dillard’s shoe department. She admires age-inappropriate heeled sandals in goldenrod suede. Her rare want is palpable. After I help her get them on, she stands stiller than she has in years. Our eyes lock. “I can balance!” she squeals.
In the decadelong experiment to stop her from walking on her toes, countless adults have tried to train her heels toward the earth through titanium day braces, a dozen sets of night braces, afternoon stretching braces, years of therapy — occupational, physical, craniosacral, yoga, neurosensorimotor reflex integration.
From craning her head forward to balance, she developed months of ongoing neck pain so severe that she was convinced she had “snapped a vertebra.” It bothers her that her calves are muscled like those of a ballerina who stays on pointe. I can only remark that I’m jealous about her gorgeous legs, but I’m unsure if it’s helpful or hurtful. Her ankles are susceptible to twisting because her weight is carried entirely in the balls of her feet, so ice packs always remain in the freezer at the ready.
The current trial is serial casting that stretches her calf muscles, fixing her ankles at 90 degrees. We’ve discussed this treatment as a possibility for years, and when we went for a consult a few months before her 11th birthday, she’d surprised me by saying she wanted to proceed right away.
“I previously failed to appreciate how diminished her calcaneus is,” remarks her orthopedic APRN. The heel bone that should be the largest in her foot, which might otherwise strike the ground with every footfall, is severely underdeveloped at a third its expected size because it has never borne weight.
After two weeks, her hot pink cast shells are cut away, tossed in a trash can atop the detritus of the day. Her feet smell rotten from spending a fortnight in the casts. We’ve endured the pee-yew shock and “it’s always like that” reassurances and now we’re just trying to ignore the odor.
The pains of moving her feet for the first time in 14 days overwhelm her normally even expression. Then, I wash her feet with orange bergamot soap to give her as much of a spa experience as possible using a plastic children’s hospital basin.
On the top right of one foot there is a purple-red area on the verge of blistering. On both bottoms, there are two sheet-white patches where sweat has been held against her skin with no means of drying. On the balls, years of hard, yellow calluses. I know her changing feet better than my own.
I hold her legs with firm embraces her therapist has taught me will calm her nervous system and soothe skin and hairs compressed for weeks, now suddenly exposed to the elements, cold air, danger. She wanted this casting, but I think about her still-tender age, about consent swayed by things her father and I may or may not have said, about how much she’s already endured and how much she doesn’t yet know.
“It’s like I want to walk flat but I also don’t know who I would be without walking on my toes,” she tells me.
I suggest she think of her Barbies, their different hair colors and textures, their skin colors and body shapes, the one that came in skates and another in a wheelchair. I’m thankful there’s so much variation from the “stereotypical Barbie” of my girlhood.
I pull up my own shirt and point to the scars I’ve worn for more than 40 years, jaggedly crossing my belly in the four cardinal directions, access points for nine surgeries during which doctors have tried to correct wrongs deep beneath my skin. Though as an adult my differences are mostly invisible, the pain of my body’s betrayals and humiliations from childhood stay fresh.
After years of self-work, I have substantially stanched my long-standing desire to punish my body by starving it, overfeeding it, dousing it with alcohol, poisoning it with drugs and smoke.
I have thought: I feel beautiful now. What if I was all along? I try to keep this sense alive in me, hoping that healing my relationship with my body may save her grief in her relationship with hers.
My daughter has been asking to meet with other kids who walk on their toes. I join a Facebook group for parents with kids who toe-walk, ask nurses who I hope will have some ideas, google to see if I can find any groups. All dead ends. Then, in my Pilates class, a 20-something young woman in grippy Mary Jane socks crosses the room. My eyes are drawn to her feet. Throughout class, I steal glances. Move by move, she guards and adapts, just as I’ve seen my daughter do.
On the reformer, my tension builds with the question: say something or say nothing. I don’t want to sacrifice a stranger’s well-being for my daughter’s potential well-being, but I take the risk.
“Do you have a minute?” I ask. She nods. We share names. “My daughter walks on her toes, and I’m wondering if you do too?” She says she does and we talk.
Later, I tell my daughter about the woman. She says, “This is the best thing that’s happened to me all year!”
When they meet, they talk about all kinds of things, mostly nothing to do with walking on toes. The woman has never done any therapy whatsoever. She invites my daughter to meet her friend who also toe-walks.
I remind myself to say “toe-walks” rather than “toe walker,” to separate the way my daughter moves through the world from who she is.
In “Barbie The Movie,” Barbie steps out of platform sneakers onto pink sand. Her feet go rubbery and she tumbles. “Flaaaat feeeet? Ughhhhh!” one of the other Barbies says amidst others’ guttural gags. “You’re malfunctioning.” The Rx? A visit to Weird Barbie — the doll who holds the answers to righting Barbies’ lives when they are skewed beyond understanding.
At Halloween, I dress as Weird Barbie, circling my left eye with black eyeliner and drawing blue and pink intertwining zig-zags on my forehead. I slide into side splits and front splits, boldly embracing the oddities of the character, hoping when life feels incomprehensible, my daughter will come to me.
The orthopedic APRN flips my daughter from stomach to back, bends her legs straight and to 90 degrees, asks her to stand. She stands before me, feet flat as pancakes.
“The casts can stay off! Message me in MyChart if you have any issues.”
I think this is supposed to feel like magic, but I’m having trouble. A kid whose entire center of gravity has just been recalibrated, whose heels have never touched the ground, is left to learn to walk on her own?
As an Aquarius, my associated body part is the nervous system. The fearful part of me fires. Pisces have a tendency to worry. I don’t need a birth chart to know this about my daughter, so I make my best attempt to disguise my snapping nerves and save her fretting.
“How are you feeling?” I ask as we head toward the exit.
She doesn’t hesitate. “Skeptical.”
Within a week, she walks sometimes flat, sometimes on toes.
At the town pool, she meets a new friend. I wonder what it feels like for my daughter — leading with her lagoon-blue eyes and easy nature, her feet dangling unnoticed below her body, moving like any other kid’s feet through the depths of the pool.
My daughter is a dreamer, drawer, writer, character builder. Stacks of the 200-plus books she’s drafted over four years spill from drawers, fall from her bedside table. Mostly, her characters’ feet are depicted as simple sticks or ovals. She’s started a memoir called “Look Down.” She wants to write a children’s book with a protagonist who walks on her toes. I tell her I am working on an essay about her toe-walking and ask her what she thinks.
“I have a problem with it,” she responds. I feel my ears burn with guilt. Then she continues, “Why are you just writing an essay and not a book?”
I ask her if the essay were to be published how she would feel, having all those eyes on her story. “I’m bursting,” she said through a wide smile. “I hope it can help some kids and parents.”
Made-to-Move Barbie has taken up residence in the dream house. This Barbie can sit cross-legged for pranayama breathing, reach into crescent lunge, and sit in a chair with bent knees. Her ankles articulate, allowing her to stand both flat and high on her toes.
“I wish it were that easy,” my daughter says, flipping Barbie’s foot back and forth, up and down.
Her new physical therapist has a Ph.D. in gait biomechanics. He tries cupping to lengthen muscles and loosen fascia. The cupping is so painful she cries, which she rarely does, so I pay attention. He says we can stop, but she says she’ll press on. When it’s over, he directs her to an angled board, and her heels stretch down more than ever before. Is continued treatment worth her pain? Worthy of her tears? I don’t know what she’ll decide.
Meanwhile, we spend more time in the dream house. When we are done playing, I watch her stand and cross the playroom, walking toward whatever is next. Her feet propel her, half touching the earth, half reaching for the sky.
Erin Wood is author of “Women Make Arkansas: Conversations with 50 Creatives” and is editor of and a contributor to “Scars: An Anthology,” which assembles the work of nearly 40 contributors writing about scars of the body. Her work has been a notable inclusion in “The Best American Essays” and can be found in The Sun, River Teeth’s “Beautiful Things,” Catapult, The Rumpus and elsewhere. She is writing a memoir about complicated birth, infant loss, female friendship, surrogacy, and motherhood. She owns and runs Et Alia Press in Little Rock, Arkansas. Find her at erinwood.com and etaliapress.com.
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