'Perfectly capable'

Editor's note: This is the cover story of Friday's Progress section, "Remarkably involved." For more stories on area individuals who are remarkably involved in the community, pick up a copy of the Creston News Advertiser on newsstands.

MOUNT AYR – On a late-November day, Tessa Kniep and fellow sixth-graders paused from their social studies lesson to look out the window and marvel at snow flurries falling.

A buzz of chatter filled the room before teacher Julie Shields redirected the students.

Working in pairs to complete an activity, Tessa’s partner was Zoey Larsen. With Tessa’s chin pressed to her book as she read, her sharp concentration was intermixed with a few giggles and grins.

After class, Tessa promptly packed her belongings and headed to Melissa Weber’s room, accompanied by Barb Strange, a substitute aide.

“You did awesome today. Are you going to do awesome tomorrow?” Strange asked Tessa, while signing off on Tessa’s achievements of the day using stars.

“I’m going to do awesome!” Tessa said, grinning.

It was her last stop of the day visiting Weber, Mount Ayr Community Elementary School special education teacher. Tessa greeted her teacher with a hug.

“You have no homework tonight! Are you so excited?” Weber asked Tessa.

“Yes!” Tessa exclaimed. “And, it’s snowing!”

After school, Tessa rode the bus to the middle/high school to meet up with her mother, Shaun Kniep, high school English teacher, and her fraternal twin sister, Jillian.

While Jillian read from a chapter book, Tessa was engrossed in an educational computer program.

Jillian, who stands more than a foot taller than Tessa, calls her sister an “electronic junkie.” Tessa’s favorite device is her Kindle; she adores reading.

Disability

“As far as Down syndrome, we’ve never used those words with her,” Shaun said. “She has no idea she has that kind of disability, and the reason we haven’t used those words with her is because we don’t want her to use it as a crutch, like, ‘Well, I have Down syndrome, so I can’t do that.’ She’s perfectly capable of doing everything everybody else can do.”

When Shaun and her husband, Clint, an engineer for BNSF Railway in Creston, had the twins, Tessa was born with Down syndrome and also a heart condition.

“I mean, she’s a smart kid, and I think she knows she’s special,” said Shaun, tearing up. “But, she can do anything she wants.”

Test results show Tessa’s capability. Last year, the twins took the Iowa Test of Basic Skills, and Tessa scored just two points from proficient.

“She knows and understands a lot more than people give her credit for,” Shaun said. “And, she’s a really strong reader. She doesn’t think she’s as strong of a reader as she actually is.”

“Yeah, she could handle this book if she tried,” Jillian said of the chapter book she was reading.

At school, Tessa has most of her instruction one-on-one with Weber, who’s in her first year teaching at Mount Ayr. Together, they work on reading, writing and math. Then, Tessa goes to classrooms to learn alongside her peers for subjects like science and social studies. She also works with a speech pathologist.

“We really target the skills that she needs and the gaps that she has,” Weber said. “She has really grown in her reading skills this year. She’s very fluent, but the comprehension is where we’ve really been targeting, and she has progressed in that.”

Weber said Tessa’s classmates are “amazing with her.”

“Tessa is very bubbly, energetic and she’s kind. She always thinks of the other students,” Weber said. “She’s a fun girl to work with.”

Heart defect

In addition to having Down syndrome, Tessa was born with atrioventricular septal defect (AVSD), a heart defect.

“You have four chambers to your heart. Well, right where those four chambers meet, the center of her heart was missing; it was just a big, gaping hole,” Shaun said. “And, where you’re supposed to have the two valves that connect those four chambers, she was only born with one.”

At 4 months old in December 2004, Tessa needed surgery, but the cardiologist said she didn’t weigh enough.

“So, they put her on a feeding tube and she slept, from December until about the end of February, in their baby swing,” Shaun said. “The feeding tube ran through the night – it ran constantly – so that she could get up to 10 pounds in order for them to do the surgery.”

On Feb. 23, 2005, Tessa underwent open-heart surgery.

“They grafted shut the center of her heart and cut her valve into two valves, but it didn’t separate equally, so they had to leave what they call a cleft around one of the valves, and that means she always has regurgitation around that valve,” Shaun said. “Our hearts have a moment of silence, but her heart is never silent. There’s always a swishing sound when you listen to her heart.”

Prior to Tessa’s surgery, the twins shared a crib in infancy.

“You would go in and they would be curled up together, arms around each other,” Shaun said.

But, the two had to be split up when sleeping following the surgery to ensure Tessa would be safe.

“We put them in two cribs side by side,” Shaun said. “Well, we would go in and they would be holding hands through the bars of the cribs!”

The Knieps were told by the time Tessa was 3 years old, she would need to have another surgery to either replace or fix her valves.

Though Tessa is small for her age – about 4 feet, 6 inches tall – she has continued to grow every time she visits the cardiologist. Because she continues to grow, the doctors are waiting on the surgery.

“(The cardiologist) tells us, which doesn’t make me feel better, that when she goes into heart failure, then that’s when they’ll prepare for her next surgery,” Shaun said. “I was like, ‘Heart failure? What’s going to happen?’ He said she’ll start needing to sleep all the time and won’t have as much energy as she has on a daily basis, but that’s not happened yet.”

Clint and Shaun have chosen not to worry excessively about Tessa.

“It’s probably coming in the next few years, but we’ll just take it as it comes and have faith that God will get us through it, right?” Shaun said, looking at Tessa.

“Right,” Tessa responded.

Extracurriculars

Aside from school and reading, Tessa enjoys playing sports and watching those Jillian participates in, as well as watching plays directed by her mother.

“I like to watch volleyball, baseball, softball and football,” Tessa said. “I play volleyball and run track. I used to play softball and basketball, but I don’t anymore.”

She and Jillian also show calves and goats through Ringgold County 4-H.

“(Recently), I showed a bucket calf named Salt. It was amazing,” Tessa said. Jillian had the counterpart to Salt – a bucket calf named Pepper.

In addition, the twins are involved in the United Methodist Church youth group.

“Tessa joined us for a few days on our mission trip (last summer) but really provided a spark to our group,” said Chandra Poore, who co-leads the youth group with her husband. “Besides working in Ringgold and Decatur Counties, she also helped with a project in Worth County, Missouri. One day, she helped unload food at the local food bank. ... Tessa has a special place with our youth group and her faith.”

Looking out

No matter what comes their way, the twins look out for each other, which has helped with Tessa’s situation, Shaun said.

“One day they’ll be playing together and having fun together, and the next they’ll be fighting like cats and dogs. But, they’re very close,” Shaun said. “Jill takes very good care of Tessa.”

“And, I help Jill every time Jill needs help,” said Tessa, who then kissed Jillian’s cheek.

“No kissing! You know how I feel about kissing,” Jillian said.

Jillian appreciates having a twin sister because she always has someone to spend time with.

“All my friends have older sisters or brothers in high school, and me and Tessa, everybody’s jealous because I have someone my age and Tessa has someone her age,” Jillian said. “My friends constantly bicker with their siblings.”

“I love her,” Tessa said of Jillian and patted her leg.