Avon Middle School North Student Owen Carr Has a Brave Spirit & a Unique Journey

Photographer: Amy Payne

Life has a way of putting things into perspective. For Owen Carr, the perspective was born even before he was. Diagnosed in utero as having an abdominal wall birth defect, Kelly and Kevin Carr braced themselves for some medical trials. But they had no idea the ride they were about to go on when Kelly went into labor seven weeks prior to her due date. 

Born at 12 minutes until 12 on December 12, 2005, Owen endured his first surgery on his abdominal cavity within 12 hours of his debut. The surgery was touch and go. That was the beginning of the rollercoaster of 24/7 anxiety the Carrs would face as doctors initially rated their son’s chance of survival at 30 percent. Once they determined that Owen’s heart was okay, survival rates improved. Nevertheless, his medical issues mounted. 

“The NICU is a mass of humanity,” says Kelly, noting that many times during Owen’s 66-day stint, they witnessed babies that wouldn’t survive. Whenever they saw ministers visit and privacy curtains close, they recognized the gravity of the situation.

“We have a strong faith, but we were desperately afraid of losing our child,” Kelly says. “And we did almost lose him three times in his infancy — full-on crash carts.” 

That kind of daily stress is beyond exhausting. 

“Imagine hitting your car’s gas pedal and leaving it there for years,” Kevin says. “That’s what it was like dealing with the constant adrenaline, stress and burnout.”

One day the Carrs realized that they had to stop praying for God to let Owen live and start praying for their son to be filled with life.

“That was one of the holiest moments I’ve ever experienced and a real turning point for us,” Kelly says.

During Owen’s first six months of life, he got progressively sicker because the surgeries on his abdomen pushed on all of his organs, making breathing arduous.

“Since it was hard for him to breathe, that made it hard to suck and swallow safely, so he kept contracting pneumonia,” explains Kevin, a local minister.

It was a cyclic effect as pneumonia made him cough, which put pressure on his abdomen. Physicians had to manage Owen’s feeding so they put him on chemical nutrition. But that caused his liver numbers to worsen, forcing them to insert a trach and feeding tube.

“I spent my first Mother’s Day holding my paralyzed baby in my arms as he fought to stay alive,” Kelly says.

After seven months, the couple finally brought Owen home from the hospital with a feeding tube and a ventilator. They were given the option to receive round-the-clock nursing care. They declined, however, because they wanted to adjust to their “new normal,” which involved getting up every hour throughout the night to check on their son.

“Kevin and I switched off so we could each get two-hour blocks of sleep,” says Kelly, who works as an educator in Plainfield. “We didn’t want a nurse. We wanted our hands on him.”

Sadly, Owen’s medical problems continued to escalate. He developed a crippling seizure disorder followed by a rare disease that caused blindness in his left eye. After that one-two punch, Owen was diagnosed with mild cerebral palsy as well as autism and an immune deficiency. Owen was in and out of the hospital every other month until he was five years old. 

The Carrs hired physical, speech and occupational therapists to work intensively with Owen. In third grade, however, they began to back off so that Owen could start to feel more like a little boy and less like a patient. They wanted him to embrace life and all it had to offer.

Kelly admits that when she was pregnant, she had life all planned out, complete with a minivan and additional children. In the wake of Owen’s health issues, everything changed. Learning to relinquish control, however, has been liberating. Now the family dives into whatever life throws at them. So, when Owen expressed an interest in horses, they started hanging out at horse barns and attending rodeos. Owen even participated in the Equine Special Olympics. 

Owen’s equine obsession led him to something else that has brought him tremendous joy. While watching the Florida State Seminoles play, he watched a Seminole Indian named Osceola (the school’s mascot) ride onto the field on a horse named Renegade. That sparked an interest in mascots and Owen started researching all the different college mascots. After studying up, Kevin quizzed his son, listing every university he could think of to see if Owen could name the corresponding mascot. 

“He got 95 percent of them right,” Kevin says. 

One day Owen walked up to his principal at Avon Middle School North (AMSN) and asked if he could be the mascot since the school didn’t have one. The principal agreed, and this past year Owen started donning the Oriole costume for home basketball games.

“I just want to make people happy,” Owen says. “I like getting the crowd excited.”

His school spirit is off the charts. Being moderately deaf in his right ear, he has to wear a hearing aid so he requested a black-and-gold one to support the Avon Orioles.

“He’ll wake up saying, ‘It’s mascot day!’” Kevin says. “In his prayers, he thanks God for letting him become one.”

The experience has helped his confidence soar and has given him a rich social life. Though fans come to root for Avon’s athletes, a big part of the crowd is there to support Owen.

“He’s got his own cheering section,” says Kelly, noting that most of the students Owen encounters love and accept him for who he is.

“The star football player sits near him in choir and chats with him every day,” Kevin says. “The cheerleaders are always so friendly.”

In December, Josh Keller, AMSN’s Dean of Students & Athletic Coordinator, announced over the loudspeaker that Owen was celebrating his birthday and the student body erupted in cheers. 

The Carrs acknowledge that life is different than they anticipated. They grieve Owen not getting to experience a normal life. They grieve not being able to add to their family as planned. For a long time, they grieved their loss of freedom as they couldn’t venture far from the hospital. 

“Grief will always be there in some capacity — like when he turns 16 and all of his friends are getting their licenses,” Kelly says. “And when they turn 18 and leave for college. But we’re not going to let grief rule us. Instead, we’re going to celebrate what Owen is going to do, and that’s yet to be written.”

One of his plans for the future is to visit every state so he can check out mascots at each university stadium. Long-term plans may involve barber school as Owen, 13, says he wants to work at Cookie Cutters.

“We’re going to guide him to be the best Owen he can be,” Kelly says. “We sit back and marvel at where he was, what was supposed to happen and where he is now.” 

In the meantime, the family enjoys living in a community that provides so many great opportunities for children with special needs. For instance, Owen swims and plays basketball and soccer in the Miracle Movers Club in Plainfield. 

“It’s the most beautiful thing in the world to watch a bunch of kids with special needs running around a field — even if they’re chasing butterflies,” Kelly says. “The kids are excited, but the parents may be more excited because we are all cognizant that we’ve been given the chance to see this.”

Owen has also performed on stage in The Biz Academy of Musical Theatre’s A Time to Shine shows, which spotlights children with special needs. 

“We love the genuine connections we’ve made in Hendricks County,” Kelly says. “For instance, we’ve been going to one of our favorite restaurants, La Hacienda, since Owen was a baby with a ventilator. When we go in, they call out, ‘Party of Owen!’”

And now the Owen party has moved to AMSN. 

“Owen has tremendous school spirit regardless of the sport and a drive to become involved in a positive manner here at Avon North,” Keller says. “He’s a cool kid and I’m blessed to have gotten to know him this year.”

Carson Foxen, a seventh-grader at AMSN, appreciates Owen’s loyalty. 

“Owen is the kind of kid that’s always there for you as a friend,” Foxen says. “He always has a great attitude in school and out.”

Kelly smiles sweetly as she describes her son.

“He’s a fighter — determined and extremely brave,” Kelly says. “He’s also loving, accepting, empathic, kind and funny.”

Perhaps most of all he’s a teacher as he demonstrates daily the joy of living in the moment.

“We live knowing that today is a day we get a front-row seat to a miracle,” Kelly says.