As October is Spina Bifida Awareness month, we are resharing a post from 2022.
“Can I ask why you’re in a wheelchair?”
It’s a pretty simple question and one that I should have asked years ago.
I met Carrie Carpunky and her daughter Katelyn seven days (I think) after our son Josh was born. Carrie is a very talented newborn photographer who, at the time, had her studio in our neighborhood. Katelyn was in the studio that day helping her mom. I noticed Katelyn was in a wheelchair, but the only question that came to mind was whether she maybe was the secret baby whisperer.
As the years went by, I kept in touch with Carrie via Facebook and learned that Katelyn, now 21, was born with spina bifida. They graciously agreed to sit with me and discuss their journeys in navigating this condition. I hope you leave with the positivity and love I felt after our lunchtime chat.
What Is Spina Bifida?
Carrie explained that within the first 28 days after conception, the baby’s spinal cord doesn’t completely close. The nerves are left unprotected and become twisted. Spina bifida results in paralysis and other issues. Katelyn is fortunate in that her condition only affects her legs. There is no cure for spina bifida, but there are treatments for other conditions triggered by the disease.
According to the National Institute of Neurological Disorders and Stroke, 1400 children are born with Spina Bifida yearly in the United States. This number is down almost 50% from when Katelyn was born.
What Would You Go Back and Tell Yourself?
Carrie beat me to one of my questions when she said, “2001 mom was a big pushover and did everything that the doctor said. 2022 mom would’ve been like, ‘Heck no’.”
They have learned that there are as many good doctors as wrong doctors, and you have to be an advocate for yourself and your kid. For them, that meant learning everything they could about spina bifida. It also provided a great learning experience for Katelyn. Carrie mentioned that when Katelyn was 13 or 14, she would advocate for herself anytime they were in a store and she found it hard to maneuver her wheelchair.
I’ll be honest— I never really thought about it until I was trying to find an accessible table for us to sit at for our discussion. And even though the table worked, it was still a challenge to get to the table.
What Has Been Your Biggest Victory?
I was curious as to what Carrie and Katelyn thought their biggest victories were, and not surprisingly, they’re no different than what any other mom and kid may reply.
“I raised a pretty badass kid,” Carrie said. “That is my biggest victory.” She’s proud that Katelyn has become a “normal, functioning human, who is kind, inclusive and advocates not just for herself but for other communities.”
The question was tougher for Katelyn, but her mom had the answer. Last fall was big for Katelyn. She came out as gay and started seeing a therapist. One of the topics she’s tackled with her therapist is how she thinks others perceive her. After a fall on an icy Thanksgiving, Katelyn stopped walking. She felt even more conscious of people’s stares. She felt like people saw her as Frankenstein’s monster. With the help of her therapist, she’s been able to move past this inner dialogue and get back to therapy.
It Takes A Village
The Carpunkys have an amazing family support group. Even for minor procedures, everyone shows up to support them.
The stories that hit home for me are about Katelyn and her two best friends. These modern-day Three Musketeers have been friends since they could giggle and clap as babies. When each of Katelyn’s friends passed her driver’s exam, they drove to her house, figured out how to get the wheelchair into their car, and went out for a drive.
One day, they were all headed to the movies, and the only accessible seats were in the back of the theater. Her friends carried Katelyn to better seats while a stranger in the theater made sure to carry the wheelchair down to their spots. They’ve made sure Katelyn is included; everyone needs friends like that.
One Last Takeaway
Both Carpunkys expressed frustration when people, young and old, stare at Katelyn in her wheelchair. So I asked them, as a mom who wants her kid to do better, what should we do? Katelyn said, “Just ask.” Some people may not want to answer, but others may share an inspiring story.
A spina bifida diagnosis is different for every family. Carrie made a promise to stay positive, regardless of the challenges, because there were a lot of people going through much worse things. They have great doctors now. They have great support. They’re both advocates, ladies to admire, and have taught me a lot.
For more information about
Spina Bifida and support in St. Louis,
go to www.sbstl.org.
