Katlyn Gardenhire, 22, and sister Carolina, 12.

On a sunny but windy spring afternoon in April, Katlyn Gardenhire tucks her sister Carolina’s hair behind her ear and asks her, ‘Hey, can you smile for me?’ Although Carolina can’t speak or walk, Katlyn, 22, knows all the tricks to get her 12-year-old sister grinning from ear to ear.

But the wind poses a distracting challenge. Carolina grows impatient, throwing her arm up as Katlyn gently coaxes it back down onto her lap. All the while, Katlyn never loses her patience or her smile.

Carolina Gardenhire has been in an uphill battle since birth. At 10 months old, she was diagnosed with 3P Chromosome Deletion Syndrome, meaning Carolina is missing a copy of the genetic material located toward the end of chromosome 3. That means Carolina has microcephaly, delayed myelination (a nerve disorder), a sleep disorder and significant developmental delays. She also has esophagitis, gastroesophageal reflux disease and gastric motility issues. She has been tube-fed exclusively for the past three years.

“When she was first diagnosed at 10 months old, it was devastating and felt like we were mourning a death — the death of our preconceived expectations, hopes and dreams for her future,” said Carolina’s mother, Kim Gardenhire.

“All I knew was that I was going to have a disabled sister,” Katlyn said. “I remember thinking, ‘Is she going to be able to talk? Is she going to be able to walk?’”

Originally, the doctors warned Kim and her husband, C.W., that Carolina might not live past 2 years old, because so many other children with her condition had not. After the family had grieved, they began planning and researching how to give Carolina the best quality of life possible during her remaining time.

“We realize now that so many days we were balancing fragile china on sticks and a slight breeze would bring it all down,” Kim says.

Despite the odds stacked against her, Carolina is about to turn 13. Today, she is mentally functioning at the level of a 3-to-5-year-old, depending on the task and test. She has been attending the Sunshine School in Searcy since kindergarten. Soon, Carolina will get a communication board for school that will enable her to communicate via touch.

Katlyn, Kim, C.W. and Carolina Gardenhire enjoy time at the park together. Katlyn and Carolina’s brother, Garret, attends the University of Arkansas.

Finding Balance

Katlyn Gardenhire is the oldest of the Gardenhire clan. Her 18-year-old brother, Garret attends the University of Arkansas in Fayetteville studying engineering. Katlyn says she always wanted to be a news reporter for Channel 11. She accomplished that dream and is now a full-time reporter for THV11.

But her career isn’t the only thing on her plate. In the last year and a half, Katlyn became a certified caregiver, allowing her parents time off-duty and peace of mind that Carolina is left in great hands.

Katlyn’s parents both work full-time jobs in addition to caring for Carolina. Kim is a registered nurse at UAMS while C.W. works for the Arkansas Board of Education.

“I respect them so much for being able to do everything they do and still care for her,” Katlyn says. “They do everything they can to give Carolina what she can have.”

As Carolina grew up, reality set in for the family. Often, they couldn’t attend recitals or school events or even take basic family outings together. Kim and C.W. had to divide and conquer, while one stayed home to take care of Carolina. Although Katlyn and her family felt the strain of the difficult situation at times, they continued to find silver linings.

“We always try to think of it positively and just have fun,” Katlyn said. “We take life day by day. And some people with disabled kids don’t know how to take care of them. So I’m thankful that Carolina has us, too.”

“We struggled for years to try to fit in with the norm, even in our own families,” Kim says. “When we decided to create our own norm, life became easier. This life with Carolina is a blessing and a challenge. Each of us has grown more understanding, compassionate, accepting and loving. We have created a home that is now nonjudgmental and safe. We have learned to love genuinely. Carolina has a wonderful sense of humor and a beautiful laugh that can lift you up, even when you do not feel worthy.”

Filling a Need

C.W. and Kim struggled for years to find a capable, reliable caregiver to help care for Carolina until they got off work and on the weekends. It wasn’t until 2015 that the two found a caregiver for after school. Before then, C.W. frequently worked from home and would switch off when Kim got home from work. Finding a weekend caregiver was even harder.

“It’s just such a demanding job,” Katlyn says. “When people realize that, they don’t want to do it. That’s why most caretakers are family members of that disabled person. You have to have a really special heart a different kind of personality to handle disabled people.”

Katlyn decided to help her family by becoming a certified caregiver because she already knew everything about her sister’s disabilities and knows how to care for her. She became certified through Lonoke Exceptional Development Center, a nonprofit organization licensed by Arkansas Developmental Disability Services.

Through the Lonoke Center, Katlyn found out about the statewide caregiver shortage. She did a story on the subject for Channel 11, citing both a lack of applicants and underfunding of the caregiver workforce as reasons for the shortage. Katlyn experienced this firsthand watching her parents try to find weekend help for months before she volunteered to help herself.

“I never thought about getting certified because if I needed to watch her, I knew how to take care of her,” Katlyn says. “But it’s not a job, really. It made everyone feel safer because it’s a family member watching her.”

The task itself is demanding, but caregivers who are qualified for the job are crucial. Katlyn said a typical day with Carolina begins with draining her stomach and giving her different medicines through a syringe into her feeding tube. Then, she puts milk in a bag and attaches it to her feeding tube. She has to sit upright in her wheelchair for about an hour for the feeding. After that she can play on the floor with her toys. This process repeats every three hours.

“Excellent caregivers are few and far between,” Kim says. “Parents and their children have to trust them with their children, home and ability to care, think quickly, react appropriately in stressful situations, and be a part of our family. We are blessed that Katlyn can care for her sister on certain weekends to allow me and my husband time together.”

Katlyn knows she has to value each day with Carolina, as her sister is often in and out of the hospital due to her weakened immune system.

Day by Day

While Carolina has defied the doctor’s expectation that she wouldn’t live past 2, she is still in and out of the hospital frequently with anything from an earache to a cold due to her weakened immune system.

The constant unknown of what could happen next with Carolina’s health has brought the family even closer together.

“You have to work together as a team to get anything accomplished with her,” Katlyn says. “A lot of the stuff — her being in the hospital and not knowing she’s going to make it — it’s traumatic. It’ll bring you together. It gives you a reality check of how short life really is.”

Katlyn has also tried to raise awareness about special needs children through her job and also volunteers for the Special Olympics.

“It’s kind of like, I had nothing to do with MS before my dad got diagnosed,” Katlyn says. “I had nothing to do with kids with disabilities before my sister was born. So I try to raise awareness through my stories and capture the moments of that kid that’s disabled. They’re so happy just to be living.”

Although Carolina can’t speak, Kim says that she communicates with them in her own way. Katlyn says that when she holds Carolina’s hand, Carolina knows that she loves her.

“I’m her big sister,” Katlyn says. “I’m supposed to take care of her. And she needs all the loving she can get because that’s what makes her the happiest.”

Katlyn says that Carolina has a balloon that she loves. The two will play around with it and Katlyn will bop her in the face with it and Carolina will burst out laughing.

“Her laugh is the best and it makes me so happy because I know she’s not in pain,” Katlyn says. “If I can make her smile just a few times everytime I see her, then it’s a good day.”