By Asha Dore
Right after my daughter, Margot, was born, her doctors noticed that she held her hands clasped together at her chest, her elbows bent at a 45-degree angle, her arms bowed out like wings. Her knees stayed bent like a tiny frog’s. The soles of her feet did not arch; instead, they bowed out, convex, like the bottoms of boats. The doctors in the NICU weren’t familiar with her condition so they didn’t tell me that, like most kids born with tight joints, my daughter looked “her worst”— that is, the most affected—at birth. They didn’t tell me that over the next three years, I would learn the language of her body: how to stretch her arms, legs, and feet to loosen her joints, how to navigate parenthood beside her, how to speak up for her before she learned how to speak herself, how to eventually step back so that Margot could navigate her own space in the world.
Margot was born with a condition called arthrogryposis, which means “curved joints.” About 1 in 3,000 children are born with some form of arthrogryposis, and every child born with this condition has a different level of tightness in various joints, anywhere from stuck straight to stuck bent. Any joint of the body can be affected. Some children are affected in all of their joints. Some are affected in only their hands or feet or hips.
All children with arthrogryposis have joint contractures in at least two areas of the body, and all of these children are expected to have atypical development.
For typically developing babies, those intuitive shifts of the body—sitting, crawling, standing, walking—roll forward like a series of soft waves. For Margot, those shifts develop like a line of dominoes spread too far apart: Pick them up. Set them up. Try again.
Let’s go back to the beginning.
Because of Margot’s bent joints, right after birth, she is immediately locked into a plastic bubble to be observed. Related conditions have to be ruled out. Blood is drawn, chromosomes are counted. An ultrasound wand is rolled over her chest and belly and head. The neonatologists use words like remarkable, impressive, and atypical to describe Margot’s body. Because of the tests, my daughter and I live in the NICU for seven days.
In the NICU, I learn about all the conditions for which Margot is being tested. Most are terminal. I learn that when a doctor says she is unimpressed, she means that whatever condition she has searched for on the topography of my daughter’s body has not been found.
On day eight, when no known cause for Margot’s tightened joints has been found, the automatic hospital doors open for us into a wet winter evening. I hold Margot’s tiny body against my chest. The sky is grey. I walk to my car through a freezing mist. I don’t want to set her down in her car seat for the twenty-minute drive to our apartment, but I do. Far away from my body, strapped in the seat behind mine, she is just my daughter there, just a baby, just Margot away from the skeptical gazes of doctors, their charts and diagnoses, the notes they took about our family history, as if it was a scavenger hunt leading to the elusive explanation for why Margot was born “different.”
Driving home to my husband, I replay the last conversation I had with one of the neonatologists. “Her life will be different, compared to other children,” the doctor said.
“What do you mean?”
“It’s hard to say. You’ll need to follow up with orthopedics, genetics and neurology until they agree on a diagnosis. Hopefully then you’ll find some answers about how her life will look.”
For the next year, I drive Margot’s small body from doctor to doctor, trying to determine the cause of her tight joints, even though she’s thriving. Finally, an orthopedic surgeon glances at Margot and decides that arthrogryposis is her definite diagnosis. I download the single medical text that has been published on the diagnosis and read it all the way through. Afterward, I have to spell arthrogryposis for almost every new doctor we see. At first, I hear myself spelling it with the pride of discovery. Like choosing her name, except this one was chosen for us. Even though it is a vague condition, the diagnosis itself is our compass, my entry point into her world.
Soon, spelling the name unfolds a new narrative: Most doctors have no knowledge of her condition, but in their profession, they are taught to speak in definitive terms.
They say, “She will not walk until she is five.”
They say, “She will never walk.”
They say, “She will need a ten-hour operation for each foot.”
Little they say turns out to be based on science. Margot’s physical therapist tells me, “Doctors lower your expectations so that you’re constantly, pleasantly surprised.”
She shows me how to stretch Margot’s knees and advises me, “Take joy where you can get it.”
I look down at Margot’s hands as they try to press a little triangle into a square-shaped hole. I want to kiss her gorgeous, gentle fingers. They remind me of grass and wind.
Right after Margot turns one, I find a doctor who understands her condition. He works at a hospital two states away. Twice a month, I drive Margot twelve hours round trip to watch this doctor bend her feet into a standing position. He wraps rolls of plaster around her feet and ankles and calves. A couple of weeks later, he saws off the casts, bends her feet and wraps them again. He does this again and again, stretching the muscles until the soles are flat. Later, the doctor will perform a short surgery to build a small arch in the middle of each foot.
A month into Margot’s first series of casts, she catches a bad respiratory infection. I take her to a local children’s ER, and she is admitted. While I’m there, I spell arthrogryposis for the nurses and doctors. As I say the letters, hands scribble them down. They sneak suspicious glances at her casts, then at me. They ask me to explain, again, why she wears them. I give them the phone numbers of the doctor who casts her two states away and her local pediatrician, but it is a Sunday. By the middle of the day on Monday, the doctors have gotten hold of someone who has confirmed my stories. They stop asking questions. They stop staring at Margot’s casts. They shake my hand. They give me a chart to monitor Margot’s O2 saturation. Finally, I’m part of her care team again. When the numbers I record on the chart declare Margot’s again in good health, she is discharged.
Margot wears the casts for almost six months before her scheduled surgery. People approach me to ask the questions, “What’s wrong with her?” or “How did she get hurt?” Or, they declare their judgment more directly, “Watch out. Don’t want to hurt her again, Mom.”
I learn how to squirm my face into a smile. I answer their questions. I spell arthrogryposis. I print out cards that list the name of a website with information on the diagnosis. People approach me at the grocery store, the post office, the mall and the park. I find out that I’m no good with these unexpected social demands. I feel like I have to be friendly. To put on a good show. To fix their language about disability, even though it is a language that I barely understand. I say, “There is nothing wrong. Her name is Margot. This is her diagnosis.”
Some people walk up and point to Margot’s casts and say, “My daughter/granddaughter had to wear casts like that. They’re so heavy, aren’t they?”
I want to hug these people and thank them for closing the space between us. I try to mimic their vibe. I ask one woman whose daughter was born with clubfoot twenty years ago, “How did you deal with the scrutiny from strangers?”
She says, “Back then, we didn’t really leave the house. The world gets better all the time.”
I nod and think about all the times I hurried away to avoid a stranger’s questions instead of trying to smile and connect. I promise myself I’ll reach further. I tell myself, this is my job. I am a parent. Parents are supposed to carve out a space for their kids to move through in the world. I have to carve better.
Margot has surgery on her feet. A month later, her casts are removed. She’s eighteen months old when she is fitted for braces that wrap around the back of her calves, under her foot and around her ankle. It’s summer, so the braces are visible. As more people approach me with questions, I learn how to pack as much information as possible into a short phrase. I learn that sometimes, it’s okay to kindly tell them that our story is none of their business. Still, I feel a responsibility to answer their questions with a small story—her life, seen through the lens of her diagnosis. Like the story I’m telling you right now.
A week before Margot’s second birthday, she starts to crawl. Then she belly laughs and claps and bangs her feet on the ground. My husband and I call everyone in our family to share the news. Mobility. My mother-in-law says she’s so happy to hear it. Then she says, “I’m sure Margot will be normal in a couple of years.”
I don’t know how to respond, to relay the information that my mother-in-law already knows: Margot will most likely wear braces, use various devices and attend therapy throughout childhood. She will also go to the park and school. She will play with her friends and watch T.V. She will love different animals and argue with her sister about who gets to read which book. This is normal.
We’re already there.
Asha Dore’s essays have recently appeared in The Rumpus, Sweet, Burrow Press Review, Best of the Net and other venues. She lives with her husband and two daughters in the Pacific Northwest.