The end of ‘Special Sarah’ Parenthood Ideas

The end of ‘Special Sarah’

August 24, 2011 – 5:48 am

This is not that story, the one about how inspiring Sarah Schwegel is. It’s important you know that from the start.

Yes, Sarah graduated from high school in May, on time and with a 3.6 GPA. She starts college on Monday. And she has a form of muscular dystrophy. She uses a power wheelchair to get around. She needs help with everyday tasks. In fact, if you look up the definition of her particular disease on the Muscular Dystrophy Association’s website, you’ll find a picture of Sarah — literally, a photo of her smiling in her wheelchair.

So it’s tempting to think of her in a particular way. Sarah knows this.

Chances are you have read about her, seen her on TV. She was the national MDA goodwill ambassador when she was 8 years old. She played a starring role on the MDA telethon and joked around with Jerry Lewis. She was on the cover of Parade magazine. She threw out the first pitch at a Cardinals game. She still makes public appearances and volunteers. She knows the routine. Sarah even approached this article with the suspicion it would paint her in those familiar tones.

But Sarah wants to shed the expectation that she’s a poster child for anything other than her own life. It’s time. She wants to leave Special Sarah behind.

Special Sarah. That’s what they call it, Sarah and her mom, the name for those moments when old ladies fuss over Sarah and pinch her cheeks in the produce aisle at Shop ‘n Save. Or when the worker behind the counter at Panera Bread Co. says to her slowly and loudly, “THIS IS YOUR CUP.” When strangers go on about how wonderful she is, and special. For just being.

Sarah illustrates her frustration by guiding her midnight-blue Permobil C500 wheelchair into her room and pretending to hit her head on her desk. Again. And again.

She is wearing a black T-shirt that says “DFTBA” — Don’t Forget To Be Awesome. It’s an acronym keenly understood by teenagers like her, kids struggling to fit in because they are different — kids who are bookish or don’t play varsity sports or just have yet to hit their strides. Sarah hated high school, “hated every single minute of it.” She cannot wait begin classes at Maryville University. Being a teenager is never easy. Being Special Sarah doesn’t help.

“Do you want some random person that you don’t know saying, ‘Oh, you’re so adorable and you’re such an inspiration and I’m so proud of you and you go through so much?’” Sarah asks. “No. It’s terrible. I hate it.”

“And then there’s the people who say, ‘I’m sorry,’” adds her mom, standing in the kitchen of their Kirkwood home.

“Yeah,” Sarah says. “That’s bad, too.”

Her mom is more likely to hear the condolences. They come from strangers and people she has known forever. Life has been harder because of Sarah’s condition. Not impossible. Only harder. And mother and daughter have been bonded by it. Sandy Kline has never felt sorry for Sarah. No reason anyone else should, either.

“They mean well,” Sandy says. “Everyone means well.”

“I think it’s impossible not to do,” Sarah says. “It’s kinda like the same way you’d treat a kid that broke their leg. You’d just be really, really nice to them. Wouldn’t you say, Mom?”

Yes, she replies. But a broken leg heals. It is possible to slip back into the world, unseen.

“It’s always a bigger deal for Sarah,” her mom says later. “And she doesn’t want it to be.”

Sarah sometimes wears a look of toughness. It’s like a do-not-mess-with-me mask. Hannah Bisch, one of her best friends, has seen it.

“I think she knows people are looking at her,” Hannah says. “And if people are looking at her, she just looks hard-core.”

But Sarah’s features can easily soften into an inviting smile, her blue eyes squinting with joy. She can be bitingly, humorously sarcastic. She has strong opinions, like on the shortage of truly accessible public bathrooms or the overuse of the word “chagrined” in the “Twilight” vampire books. If she is bored, she might rapidly press her wheelchair’s joystick, moving back and forth in short bursts, like she’s tapping her foot. She spends hours a day on Facebook. She texts constantly on her white iPhone, the one she got for her 18th birthday in July. She is a huge fan of Harry Potter and the Vlogbrothers and “30 Rock.”

Sarah was the only student at Kirkwood High in a wheelchair. She is, often enough, the only person in a wheelchair wherever she goes.

It has always been this way. She got her first motorized wheelchair at age 2. “It was adorable,” Sarah says. The tiny chair was maroon, a color selected because she liked the way her mom said it. Maroon. She learned to drive it on an obstacle course of orange cones.

Sarah has forever navigated the world with the chair’s joystick in her right hand. When she was about 13, she went through a phase when she was convinced she was not disabled. She declared it on Facebook. She insisted to her mom there was nothing wrong with her. Her mom thought Sarah had lost her mind. Her daughter was disabled. And that was fine.

They were fine. And that was good enough.

Ever since her only child was an infant, Sandy has known things would be different for them. That’s when Sarah was diagnosed with spinal muscular atrophy type II. The genetic disease affects nerve cells in her spine. Her muscles are extremely weak.

Back then, doctors could not tell Sarah’s mom what to expect. They said Sarah might live only into her teens. A year later, the doctors offered a new outlook: Sarah would need plenty of help. She would face medical issues and health setbacks. But Sarah could expect to live a long time.

That’s when Sandy started saving for college.

Sandy recalled that long-ago moment with a smile as she sat on the sidelines of a gymnasium watching her daughter play power soccer. College now was only a couple of months away. Motorized wheelchairs flew across the wood floor. They rammed an oversized ball toward a goal. Sandy once doubted the sport. What was the point? It was not physically exhausting. But Sarah was learning how to be part of a team. There was comfort in that. A wheelchair can be isolating. Everyone on the Firecrackers team is in a wheelchair. They had to play together. It was the same reason Sarah loved MDA camp, a summer week when wheelchairs were the norm.

Playing soccer, Sarah was not alone. Neither was Sandy.

The other parents along the sidelines understood what it was like to have a child who had never combed her own hair. Never cut up a steak. Never taken a book from a backpack. Sandy can feel lost talking to other parents. “They are in a completely different world,” Sandy said. “This allows some similarity.”

It’s not that Sandy or Sarah wants to leave their world. They can’t. Sarah just doesn’t want to be limited to it. To some extent, it’s not up to her. She doesn’t get to make that decision.

It’s up to everyone else.

There’s a poster at the Missouri History Museum that Sarah likes. It captures something important about how disability is viewed.

She found the poster by accident. She had stopped in the museum while taking senior photos at Forest Park in St. Louis. The poster was part of an exhibit on the American with Disabilities Act, the federal law prohibiting discrimination based on disability. It was against a far wall, an old Easter Seals ad in a frame. It shows a photo of students in a classroom staring at someone behind them, under the headline: “Kids with physical disabilities are getting too much attention.” The message sounds strange for a nonprofit advocating for people with disabilities. It might take you a moment to get it. Sarah understood right away.

She posed for a photo with the poster, a red scarf around her neck, white headband in her blond hair, the poster visible over her right shoulder.

It looked as if the kids were staring at her.

Another picture illustrates a different aspect of how disability is seen. This picture is framed and posted on a wall at Sarah’s home. It is the Parade magazine cover. The headline is “Help Us Win This Fight.” Sarah, a beaming 8-year-old, wears a blue flowered dress. She holds a yellow watering can, a bed of red flowers at her feet. She is sitting in a manual wheelchair.

The photographers for Parade had asked Sarah and her family whether it was OK to pose her in something smaller than her bulky power wheelchair.

Too much chair, they said. They wanted to keep the focus on Sarah. They wanted less chair. And that’s what they got. But something else was lost, too.

Ten years later, as her senior year ended, Sarah faced jitters familiar to any teen about to take that fledgling step toward adulthood.

She looked forward to filing into the Chaifetz Arena with the rest of the Kirkwood High class of 2011. But she worried about graduation unfolding like another recent ceremony for top academic seniors. That’s when an assistant principal, well-meaning, Sarah had no doubt, took her backstage as it began. Sarah had to sit behind the curtain, away from the other students, until her name was called. For graduation, Sarah wanted her pomp and circumstance to be just like everyone else’s.

Right after Schuchardt. Just before Schweigler. That’s where Schwegel belonged.

“That’s why I’m so nervous about graduation,” Sarah said a few weeks before the event.

“We’ll be fine,” said her mom.

“I would like to see everyone,” Sarah said.

Parenthood Ideas