'Stop trying to make your child normal': How a disabled Iowan overcame a heartless bully and got back to showing her goat
Pella Iowa native Stella Turnbull, who has spinal muscular atrophy, was able to show her goat at the Iowa State Fair and win Grand Supreme Doe. Des Moines Register
PELLA, Ia. — Bella the Goat had been poked and prodded at a morning veterinarian appointment and, by early afternoon, the young doe was not exactly in the mood to practice her show walk.
Stella Turnbull, the 13-year-old human on the other end of Bella’s rope, would have preferred a lazy afternoon, too, but instead she traced the show ring’s looping path through the heat and humidity that hung like a thick blanket just above her family’s driveway.
With a week to go until Stella and Bella’s debut at the Iowa State Fair — the Super Bowl of Hawkeye goat showing — this practice was essential, stuffy air or no. So Stella went slow. Stopping when Bella needed to straighten out. Starting again. Stopping. Taking the circuit’s turns as carefully as a new driver parallel parking her dad’s car on a busy street.
Countless Iowa kids were no doubt running the same drills, also likely annoyed by the early evening stickiness. In rural America, this sort of State Fair prep is so wonted, so familiar, it’s a Norman Rockwell scene itching to be painted.
Or, in Stella’s case, it’s an Instagram pic; a diverse, inclusive, brightly colored and wholly modern version of this pastoral pastime.
Stella, a rising eighth-grader, has the childhood form of Lou Gehrig’s, a disease that has stolen her speech, her ability to swallow, and most of her movement — most, save for the use of her fingertips.
And on this muggy afternoon, those fingertips — outfitted in three different shades of 4-H green — are working overtime, lightly pressing mechanical switches that power the specially built wheelchair she uses to show her beloved Bella. A few treats in, Bella has warmed to the exercise, too, standing erect with her front feet on the attached goat chariot — think of it as a sort of livestock sidecar — while her back legs walk along with the wheelchair’s movements.
Standing just off the driveway, in the imaginary bleachers of this makeshift ring, Stella’s mother, Sarah Turnbull, offers reminders, “Slow, Stella, slow,” and encouragements, “You go girl!” For Turnbull, this scene — her daughter’s digits leading a goat around her driveway — is another moment, another “miracle,” frankly, that she was told not to count on when her healthy baby turned floppy at one month old.
Unlikely happenings have come to define Stella Turnbull’s young life. From miracle recoveries that shocked doctors, to a persistent community presence that made her a local celebrity, to an unbreakable positivity in the face of internet bullies, to a courageous conquering of unthinkable obstacles that helped her family reevaluate what living really means.
“Our entire journey has just been steppingstones,” said Turnbull. “Milestones set and conquered that we were told would never be. People being in the right place at the right time to help us figure out what we needed to do.”
Stella wasn’t expected to live more than a few weeks, a couple of months tops. She wasn’t expected to go to school. She wasn’t expected to join clubs, be on student council or ride in the Tulip Time parades — outfitted in a specially made wooden shoe costume, no less. She wasn’t expected to show goats. And she wasn’t expected to win the first show she entered.
After the joy of that victory — one of the first the teenager received as independently as possible — was marred by an anonymous letter writer who didn’t think she deserved the chance to compete with “normal” kids, she wasn’t expected to get back in the ring.
Stella, you see, wasn’t supposed to fight.
A mother’s intuition leads to a difficult prognosis
Sarah Turnbull has been always a “mother hen,” a consequence of being the oldest child on a six-person, 150-year-old heritage farm, she says. Her brother, 10 years her junior, even called her “mama” when they were kids, drawing an eyebrow raise or two from her southeast Iowa neighbors.
Turnbull moved to Pella to attend Central College, where she met and married her husband, Travis. After her first healthy child, Treyton, Turnbull found out her second would be a girl.
Call it mother’s intuition, but Turnbull felt like something was off her whole pregnancy. Nothing was wrong medically, doctors told her, and she accepted their guidance, pushing away gnawing questions.
On the day Stella was born, a nurse turned to Turnbull and said she had a “million-dollar family”: a father, a mother, a boy and a girl. For a short while, the young mom convinced herself that might be true.
But everything changed when Turnbull drew a bath and, after splashing amidst the bubbles, Stella suddenly went limp. She wasn’t supporting herself; almost like she’d lost all muscle tone.
“I knew something wasn't right,” Turnbull said. “Kids don’t regress.”
She called her doctor, who referred her to another specialist, which led to three more. For weeks, they ping-ponged between diagnoses. Honey could lead to infant botulism, said one doctor. So Sarah threw out anything even honey-like. Dust spores could aggravate the system, said another physician. Turnbull became a human Dirt Devil.
Finally, at the Mayo Clinic, the last stop, a doctor told Turnbull her opinion.
“Don’t Google it,” she said before uttering the phrase that would change Turnbull’s life forever: Spinal Muscular Atrophy, or SMA. Stella’s brain was intact and cognitively she was all there, the doctor said, but messages from her spinal column weren’t getting to her muscles.
The prognosis was weeks, maybe months. Her daughter would most likely pass away in her sleep, the pediatrician said.
How would I ever sleep again? Turnbull wondered, fearing her daughter might slip away in the dark.
“I felt like I was just dealt the worst possible card,” Turnbull said.
Turnbull had studied to be a teacher, but in that sanitized pediatrics room she graduated into a new field: medical mom.
In this new life, she woke up fighting every day. Fighting for equipment. Fighting for opportunities. Fighting doctors. Just…fighting.
At each dead end, she forged a new trailhead — pushing with the force known only to a mom on a mission.
“I might not have ‘MD’ behind my name,” she tells me, “but I do have the word ‘mom,’ and, as far as being an advocate, those are equivalent.”
At night, Turnbull’s mind quieted, and the quiet was haunting. She’d lie in the tub and plan Stella’s funeral, laying out how she’d highlight her exceptional little girl’s short life.
She’d tell the gathered about how Stella could paint using just her pinkie. Or how she’d suck the saltiness from her breakfast bacon. Or how the little stinker figured out that if she maneuvered her chair left and right quickly enough, she could propel herself forward, right up under the TV.
Or she’d talk about Stella’s beautiful wide smile, which became an Elvis lip curl, which eventually disappeared as her facial muscles faded. Turnbull had known it would happen, but on the day her morning tickles didn’t elicit that precious smirk, she pushed up on Stella’s cheek, bidding it to return.
A “doer” armed with a diagnosis, Turnbull set out to collect all the minutes she could with her child. She’d mark time, racing some invisible clock, and will her to the next hour, the next week, the next holiday.
If Stella could just hang on, perhaps they’d outrun the prognosis.
Either way, Turnbull was going to make the dash on her little girl’s headstone, the time between her first day and her last, as long as possible.
How the Turnbulls became a goat family
The first challenge to their outrun-the-pendulum plan was kindergarten.
When Stella beat the odds and lived to 5 years old, Turnbull had to decide whether to send her to school. The simple act of being around so many kids could lead to more infections. But staying at home would leave her isolated, maybe bringing on depression.
They faced their ultimate question: Were they willing to chance shortening the dash?
And when kids gathered around Stella on the last day of school, giving her hugs and wishing her a happy summer, Turnbull knew they’d made the right decision.
Stella's grade school years were peppered with surgeries, hospitalizations and a few close calls. But they were also filled with friends, cheerleading practices, video games and a short-term drum career. The ups and downs became part of life; as Stella learned to use a system that translated her eye motions on a computer screen into words, she’d have a lung bleed and take another trip to intensive care.
The family had long submitted art projects for 4-H, but that’d been the extent of their club activities until last year when, out of nowhere, Stella told her parents she wanted to show an animal. A goat to be specific.
“My first thought was, ‘Thank God she didn’t say horse,’” Turnbull said.
Her parents mulled the idea. Her dad was convinced he could put together a contraption that would both safely support the goat and allow Stella to pilot herself.
“After I thought about it, I realized that showing an animal was going to be one of the first things that she could independently do other than driving herself around outside or at school,” Turnbull said.
Once they got their first goat, Lou, Travis worked on upgrades to the chariot schematics. When Lou’s horns hit the chair, he re-angled the rig. When his head wasn’t as upright as judges liked, Travis re-fitted the harness.
But hardware was the easiest part. For months, Stella worked with Lou to get him to put his front feet on the chariot and walk next to her — not a natural goat inclination. So Stella went slow. Stop. Restart. Show Lou who’s boss. Give Lou a treat.
Though she couldn’t lift the feed bucket or pour the water, Stella went out on every chore run, Turnbull said. She was there watching, connecting with Lou.
“Just like any 4-H kid, there are days when we're like, ‘Nope, you have to go out and do it. These are your chores,’” Turnbull said. “Even on hot nights, we’re like, ‘Nope, we need to do this or you're not going to be ready for the fair.’ So she does put in the work.”
By the time the Southern Iowa Fair came around, Lou was trained, even “chewing cud” on the chariot, a sign he enjoyed the exercise, I’m told.
The family checked out the fairgrounds early, learning that the ring’s large woodchips got stuck in Stella’s power chair. Turnbull would have to walk behind her to dislodge errant chips, they decided.
After grooming and primping, Stella walked Lou, taking corners slowly just like she’d trained. And she won her class! Then she won the next class. Then the next. All the way up to Grand Supreme Female Meat Goat, which the nascent shower clinched. The judge later told Turnbull the simple fact Lou would cooperate on that chariot was proof enough Stella had worked that goat.
When Stella directed herself back out of the ring, Turnbull noticed a twinkle she hadn’t seen in years. Her little girl’s lip curl was gone, but the distinct sparkle Turnbull remembered lighting up her daughter’s face when she smiled was there — even if only in her eyes.
“To see her so on top of the world that day that she won something was so cool,” Turnbull said.
Sometime over Stella’s middle school years, Turnbull had decided collecting minutes was a bad metric for her daughter’s life.
Now, with that twinkle, she understood viscerally that the length of that dash was inconsequential. Its thickness, how full it was with experiences, was what mattered.
‘Stop trying to make your child normal’
Stella’s win kept the family walking on air for days. There was a peace about this victory, Turnbull later realized. They’d worked hard, yes, but they hadn’t been fighting for this win.
That tranquility was brief.
About 10 days after the fair, Turnbull got a hand-written letter in the mail. No return address.
The letter writer was “very disappointed” that the Turnbulls let Stella participate with a goat the writer believed was “not raised by or attended to by” the teen. It was unfair to the other kids, the writer said.
“You should be ashamed!” the letter read. “Don’t take away the rights of those who truly want an award and work for it. Stop trying to make your child normal! If she can’t do something on her own, let it be!”
Turnbull texted a photo of the note to a friend who then posted the letter on Facebook, where it was shared widely. Those comments were just as bad.
This girl’s a cheater! Look, she’s so unhappy! She’s got no smile!
For a moment, the world stopped turning. It was like the air got heavy, crushing Turnbull’s chest. Until then, people may not have understood Stella’s situation or even agreed with their mainstreaming, but people kept their opinions to themselves.
Turnbull tried to hide the controversy from Stella, but after friends asked about the letter in front of the teen, Turnbull had no choice but to tell her what had happened. The mom watched as the special sparkle in her daughter's eye dimmed.
The family’s hard-won peace was snatched away. There Turnbull was, fighting again. Not for equipment or medicine this time, but for her daughter’s chance at a normal life.
She wanted to reach across the digital wasteland and tell that writer, tell those commenters, that Stella has spent her brief life supporting others. She goes to friends’ performances, her brothers’ football games, she shows up. And for this one moment, she was at the summit — no more trailheads to forge.
“She took pride in doing something like the other kids,” Turnbull said. “It wasn’t a pity prize. She went out there and did something like her peers and she won next to her peers. And even if she hadn't won, it would have been just as amazing because she was doing what she wanted to do with her peers with as little accommodation as necessary.”
What the dash really means
Turnbull thought she might not let Stella show goats anymore after the letter. The vitriol was too much, and for the mom who spent so much of her life fighting, this battle was one too many.
But after hanging the championship banners in Stella’s room and replaying that twinkle in her mind, Turnbull re-evaluated the experience.
The letter writer and the commentators interpreted her daughter’s life without a basis in knowledge, Turnbull said.
On the internet it’s like we’re all wearing binoculars zooming in on one part of each other’s story, seeing what we want of some piece of the whole. But to live with Stella is to look through a kaleidoscope, to see that with one small shift in perspective, one little turn of the knob, the world lights up in vivid colors with a brand new pattern to discover.
Recently, Turnbull has been rethinking what “a full life” will be for Stella. She’s gone from counting days to filling weeks to, well, just being there, walking alongside her daughter — and, for now, her goat.
You know how sometimes people can’t let go because they’re waiting to say goodbye to loved ones or they need some sort of a release, a sign that everything is going to be OK? Turnbull asks me, sitting on her patio. In order to be in the present, Turnbull had to learn to let go.
“In my mind, I feel like I had to release her,” Turnbull said. “I had to say, ‘Alright, Lord, she is yours.’ We are just blessed to have her for now and I know I’ll see her again.”
“Until I released that,” she added, “just allowing ourselves to be happy with living in the moment was a daunting thing.”
Don’t get Turnbull wrong, she’s still fighting. But she’s figured out the dash between life and death doesn’t matter at all; length, thickness, none of it. If you spend your time thinking about what you don’t have, you’re liable to miss all the good that’s happening around you.
And Stella’s not about to slow down so you can take it all in.
Courtney Crowder, the Register's Iowa Columnist, traverses the state's 99 counties telling Iowans' stories. Her goat's name would be Scape...Get it? Scape Goat! Reach her at firstname.lastname@example.org or 515-284-8360. Follow her on Twitter @courtneycare.
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