Cecilia Niemann has cerebral palsy but, like her family, is off and running

07/24/2013 11:45 AM

07/24/2013 11:45 AM

Her first triathlon, yes, but this 9-year-old girl knew the deal.

“Go!” she pleaded.

The tall, husky guy carrying her up from the lake to the bike transition area gave her a glance, then ran faster.

“Go!” she repeated.

Wow. Kind of pushy for a rookie. But Cecilia Niemann of Overland Park had waited a long time to get to this point and she knew why she was there. Her mother has done lots of triathlons. Her grandfather still does them at 65. Her uncle is an elite triathlete. Her aunt runs track at the University of Missouri.

This is a swimming, biking and running family. Even Cecilia’s little brother, Loren, can run a 12-minute mile. He turns 4 today.

This day was her time to finally join in. Cerebral palsy has stopped Cecilia from doing plenty, but at the UCP Shawnee Mission Triathlon on July 14, the condition would just be dragged along behind because friends and family were going to get Cecilia to the finish line.

Debbie Niemann, her mom, did the swim leg, towing her oldest daughter the third of a mile in an inflated raft. A family friend, Chad Milam, then biked nine miles, pulling Cecilia in a red Schwinn trailer. Finally, grandmother Wendy pushed the third-grader for the 2.4-mile run part of the triathlon.

Debbie did all three legs. Out of the water, onto her bike to ride along with Milam, then running along with Wendy and Cecilia.

“I wanted to show everybody there’s nothing wrong with Cecilia and that she can do anything she wants to,” Debbie said earlier. “She has special needs, but she’s not disabled.

“She’s just a wonderful little girl trapped in a real crappy body.”

Cecilia was born 13 weeks early, weighing one pound and 12 ounces, not much more than a large bag of chips. She fit in the palm of her mother’s hand. Her father’s wedding ring could slide up her leg.

“We didn’t think she was going to make it,” said John Halamicek, Debbie’s father. “But she was a real fighter.”

Cecilia lived the first three months of her life in a neonatal intensive care unit. A head scan prior to her discharge revealed severe brain damage from the premature birth. She would grow up with cerebral palsy.

The condition means she speaks only a little and can’t run, walk, ride a bike or do cartwheels. But her mind bounces like that of any little girl. She’s spunky. Maybe a little shy around strangers, but she’s quick to laugh at home with younger siblings Lucy, 7, and Loren, and always ready to give one a little poke when they least expect it.

They adore their “Sissy.”

As do friends at school. Debbie says other kids always want to sit at her lunch table.

“Cecilia’s come a long way,” said Debbie, now a single mother. Then she added: “And of my three kids, she’s probably the orneriest.”

She told about the time not long ago in a hospital that Cecilia held her breath to get a respiration monitor to go off.

People came running, just as she knew they would.

“Oh my gosh,” a therapist said. “She just faked that.”

“Yeah,” Debbie said.

Cecilia chuckled when the woman left the room.

Like Lucy, Cecilia attends Oak Hill Elementary in the Blue Valley School District. She spends about half her day in special education, the rest in a mainstream classroom.

She reads — Dr. Seuss is her favorite author. She loves knock-knock jokes, has a dry sense of humor, is a big fan of Katy Perry, Lady Gaga and the Laurie Berkner Band and would watch more TV if her mom would let her.

The family, along with Harley, a lab mix, lives in a quiet Overland Park subdivision. Debbie works as development coordinator for the United Cerebral Palsy Foundation of Greater Kansas City.

With a job, school for kids, day care, practices of all sorts for the kids and therapy for Cecilia, Debbie’s life is, say, hectic. But she gets help. Loren entertains Cecilia, and Lucy does what she can to make life easier for her mother.

“Lucy has always been a very good helper — more than a 7-year-old should be expected to be,” Debbie said. “But she’s growing into this beautiful compassionate person.”

Debbie knows that Cecilia will never be able to swim, bike or run. But she’d also heard about Team Hoyt — Dick and Rick Hoyt, a Massachusetts father and son who have done hundreds of triathlons. Rick has cerebral palsy and is pulled, towed and pushed by his father, Dick.

“We’re going to do that someday,” Debbie said long ago.

Because she didn’t want Cecilia to be left out of something that is so important in the family.

Blame Debbie’s father, she said. He’s the one that got them all doing triathlons.

Guilty, John Halamicek admitted. A friend talked him into doing a triathlon 31 years ago.

“And I’ve been doing them ever since,” said Halamicek, now 66.

And he’s pushed his kids to follow. He liked Debbie’s idea to get Cecilia out there.

“It’s wonderful what she’s doing,” Halamicek said. “Getting everybody involved and drawing attention to cerebral palsy. Debbie’s driven. She’s very good at what she does — job, life, home. Pushing Cecilia has made her stronger, physically and probably mentally, too.”

Wendy Halamicek, his wife of 29 years and lifelong runner (they met at a race), thinks Debbie is simply insistent that Cecilia get the same opportunities as her other children.

“I don’t know how she does it all,” Wendy said. “She’s driven. When I have a rough day, I think of her and all she’s doing and things are OK.”

Maybe for Debbie it comes down to a question she’s heard more than once about Cecilia.

“What’s wrong with her?” a stranger will ask.

“Nothing,” Debbie answers. “What’s wrong with you?”

It’s an evening several weeks ago at Shawnee Mission Lake and Debbie Niemann is late for triathlon practice.

This was planned to be her first time to lake swim towing Cecilia in the raft. The first time Chad Milam would bike with Cecilia in the trailer.

And Debbie Niemann is late. Come on, single mom, three kids, full-time job, kids in school, rush-hour traffic —what possible reason could she have for being late nearly 30 minutes on a workday?

Finally — FINALLY — the blue minivan pulls into the parking lot.

“Sorry,” she says getting out of the van.

Seems the whole bunch was in Detroit the night before for a Laurie Berkner Band concert for Cecilia, courtesy of the Make-a-Wish Foundation. They even got to go backstage and meet the children’s singing star.

But then due to delays they spent the night in an airport.

“We are going on very little sleep,” Debbie says.

She proceeds to inflate her raft. A nearby car engine starts up.

“Is a car backing up?” Debbie shouts. “Where’s Loren? Where’s Loren?”

“Got him!” Chad Milam yells.

The evening is cloudy and not many swimmers in the water or on the beach. Mostly just others training for the upcoming triathlon.

Debbie lugs the raft to the water. Cecilia rides in her wheelchair. Debbie lifts her and places her in the raft.

“Lucy, get in too,” Debbie tells her other daughter. She wants more weight.

Milam watches.

“Lugging one child isn’t enough,” he says. “But hey, why tow one kid when you can tow two?”

When Debbie starts swimming, Lucy leans across the raft to Cecilia.

“You’re doing good, Sissy,” she tells her.

After four laps around the buoys, probably about a thousand yards, Debbie crawls out of the water, then lifts Cecilia out.

“Way to go,” other athletes say as the Niemanns make their way to the bike.

Milam then starts pedaling with Cecilia in the trailer. His wife had been one of Cecilia’s first caretakers. The families have been friends since.

The training goes well.

“She enjoyed it,” Milam says of Cecilia. “Debbie said that kids with cerebral palsy crave movement, so that probably was a lot of fun for her.

“As long as she keeps smiling, I’ll keep pedaling!”

Finally the big day arrives. But, geez, up at 4:30 a.m.? Cecilia might wonder if there’s a reason these triathlons have to start so early in the day.

“She’s not really a morning person,” grandma Wendy says with a chuckle.

But a splash of water wakes Cecilia about two hours later as she and Debbie hit the lake for the swim leg.

They are not alone in the boat, so to speak. Mason Overcast, 6, of Liberty, also with cerebral palsy, is being towed by his dad, Monte.

Fans of both teams stand stand on the dock across the cove and and wait to cheer when the they pass.

“I haven’t been up this early all summer,” says Denise Andrews, the P.E. teacher at Cecilia’s school.

“But she’s touched us all and inspired us so much,” adds Cecilia’s special-ed teacher, Colleen Mazzei. “We wanted to be here to support her.”

Back on land after the one-third-mile swim, Vincent Bustamante, a friend and colleague of Debbie’s, lifts Cecilia from the raft and runs with her to the bike transition area.

“She kept telling me to go faster,” he would chuckle later. “Good thing she doesn’t weigh much.”

The bike leg was not without bumps. A screw fell out of the trailer, allowing a side to fall in on Cecilia. Also, the bike’s chain came off.

“But we got it going again and she kept smiling, so we kept going,” Milam said.

Then grandma Wendy was off and running — and pushing.

The crowd in bright blue shirts of Team Cecilia gathered at the finish line. They roared when Wendy, Cecilia and Debbie came over the hill. Same with Team Mason nearby.

All smiles as the they all crossed the finish line.

Debbie leaned to her daughter.

“You did great, Sis,” she told her.

Cecilia gave a shy smile, and somebody hung a medal around her neck.

The three had crossed the finish line as the red digital timer flashed 1:29:05.

Nobody looked, nobody cared.


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