By Robb Murray
Free Press Staff Writer
MANKATO — Don’t you dare feel sorry for her.
She doesn’t need your pity, doesn’t want it. In fact, before you think anything of Madison Harbarth, introduce yourself to the 6-year-old from Mankato, and then decide if you think she needs your pity..
Listen to her world’s cutest laugh. Gaze upon her brilliant smile. Watch her play “Happy Birthday” on the piano, show off her latest dance move, read from her favorite book, or belt out her favorite Taylor Swift song.
To see Madison Harbarth in action is to see a vision of grace and beauty joy all wrapped up in a little ball of Barbie eyeglasses, cute boots and fierce independence.
While you’re noticing these things, you might also notice she can’t walk, doesn’t get around like all the other kids, can’t use her legs to chase after the ball on the playground.
Yes, you may notice these things. But don’t feel sorry for her.
It’s true, she can’t walk. But she can roll — all by herself, thank you very much. And yes, it’s true, she can’t use her legs to chase that ball. But she’s proving to everyone at Franklin Elementary School that she doesn’t need working legs to go after it, or to mix it up with her friends, or climb the jungle gym after school.
Madison is in kindergarten now. But the Harbarth family has been trying to figure out what to do with her since even before she was born.
While still in utero, doctors discovered she had a rare disorder called sacral agenesis syndrome, which is characterized by abnormal development of the spine. The lower half of Madison’s body (including her feet, legs, tailbone, and even her spine) didn’t completely develop. She’s been going to Gillette Children’s Specialty Healthcare for surgeries and assistive technology services since birth, where doctors continue to monitor her abnormally-shaped spine.
Gillette is the hospital behind the “Cure Pity” campaign, a marketing initiative that aims to take the pity out of how society deals with people with disabilities. An incident that occurred last summer in Milwaukee, Gillette says, was a perfect example of why the campaign exists.
She was on a tour bus with her family when she exited the bus. Her parents remained on the bus. After Madison was gone, the bus driver said, “I always feel sorry for children like that.”
“We just sort of thought about it for a while,” said Pam Harbarth, Madison’s mother. “I thought, ‘Do people really pity her?’” Rick Harbarth, Madison’s father said he didn’t feel like the driver meant anything bad about it. He just felt sorry for her. But that’s the point. And Rick felt like he had to respond.
“I just told him, ‘Listen, you don’t need to feel sorry for her because she’s got a pretty good life,’” he said.
Medically, Madison’s existence was definitely more of a challenge for the Harbarths than a “normal” child would be. Even before she was born, doctors offered the family options, one of which was terminating the pregnancy. Why? In other cases, babies born with sacral agenesis syndrome are much more severely compromised physically and mentally than Madison was.
For a moment, Rick said, there was a slight amount of doubt about what to do. They’d never been exposed to someone with a disability. He started worrying about what others might think of their child and their family. And then his pastor said something to him that made the decision simple.
He told him that, when he dies and goes before the Lord, and the Lord asks him if he had done the best he could with what he had, would he be able to say “yes”?
Madison weighed 5 pounds, 3 ounces when she was born.
“The first year we really beat ourselves up over that,” he said of how they pondered whether to terminate the pregnancy.
As Madison grew, so did her popularity, especially among people who’d gotten to know her. Eventually, everywhere they went, Madison was treated like a rock star.
Once, when the family went to an open house at Franklin, dozens of kids shouted “hello” to her. “It seems like everyone who gets to know her, loves her,” Pam said.
On the playground, Madison is the only one who gets around with a wheel chair. But she is by no means limited. She pushes herelf everywhere she needs to go, politely telling anyone who tries to help that she can manage.
After wheeling herself to the layer of wood chips that lays beneath the jungle gym, she flops out of her wheel chair and, using her arms, navigates her way up the stairs, across the bridge and back.
She rolls around from friend to friend, holds hands with one, yells across the playground to another, refuses to pet a dog walking through the park with its owner. Normal stuff.
And speaking of normal ... sometimes she gets along with her brother, sometimes she doesn’t. For the most part, though, Connor, a fourth grader, has been a big help for his little sister. He carries her around when needed. And once, after school, he said to her, “Was anybody mean to you? If they are, you tell me and I’ll take care of it.”
Pam and Rick Harbarth say Madison has taught them more than they’ve taught her. “She’s totally opened our eyes to a whole different aspect of life,” Rick said.
Pam attended a dinner event last summer in the Twin Cities hosted by Chad Greenway of the Minnesota Vikings and his wife, Jennifer. The event was a gathering of mothers of kids just like Madison, including many whose challenges were tougher than hers.
She got to meet Greenway that night. And when she told him about Madison, and told him that she was from Mankato, Greenway told her he’d be in Mankato in a few weeks for training camp. Come to camp and wave me down when you see me, he told Pam.
When camp started, Pam and Madison were there. They saw Greenway and waved him over. When he got there he said “Hello, Pam,” and then turned to Madison. “And this must be Madison,” he said.
He ushered them into the media area, and then called a few of his friends over. John Sullivan, Christian Ponder, Kyle Rudolph and others came to Madison’s side. And even though she’ll not remember them in a few years, they’ll likely never forget her.