MEET THE DUFF FAMILY

KEVIN, TENDRA, KEARSLEY, TRENIN AND KAIDEN

BY ANGIE ARLINGTON • PHOTOS BY 21 VINES PHOTOGRAPHY

Tendra and Kevin Duff’s first meeting was kismet. Both are originally from northwest Ohio, and met in 2007 in Frankin, TN, a suburb of Nashville. Kevin was an active duty military police officer stationed at Ft. Campbell, KY, about 45 minutes from Nashville. Tendra was Kevin’s server at a restaurant, and while he was paying the bill, she learned they had grown up in neighboring towns in Ohio. Kevin asked for her phone number that night and they have been together ever since.

Kevin and Tendra moved to Westfield in 2011. They have three children. Kearsley (9), their oldest, is a 4th grader at Shamrock Springs Elementary. They also have identical twin boys, Trenin and Kaiden (6), who attend kindergarten at Oak Trace Elementary.

While all children are special, Kaiden and Trenin are EXTRA special. The boys were born with Trisomy 21, commonly known as Down syndrome. There is a one-in-two million chance for identical twins to be born with Down Syndrome, which makes the Duff family very unique.

The twins were born 10 weeks early on April 21st, 2016, which meant an immediate admission to the NICU. After the boys were born, life became very different for the Duffs.

Due to their medical needs, Tendra quit the job she loved at United Healthcare. She needed the flexibility to go to and from the NICU multiple times a day. Kaiden spent 5 months and Trenin spent 9 months in the St. Vincent Women’s Hospital NICU. After a duodenal atresia surgery to repair Kaiden’s small intestine, he needed time to heal and grow stronger before he could come home. Trenin’s situation was different. He was born with an extremely narrow airway, which resulted in him coming home with a tracheostomy, a ventilator, and dependent on a g-tube.

Tendra explains, “Trenin had so much equipment when he came home. The day he was discharged from the hospital, we loaded the van with a pulse oximeter, an apnea machine, mobile oxygen, a ventilator, and a feeding pump. When we got home, our home health equipment provider met us with even more equipment. It would barely fit into the double stroller we had purchased. And then I still needed to find a place for Kaiden and his feeding pump.”

Any trips the family made were stressful. “We had to have a contingency plan and a contingency plan for the contingency plan, Tendra said. “We were constantly vigilant in case Trenin pulled his trach out, his O2 status dropped or his feeding tube came out. You need to be able to change the trach, use an ambu bag or start CPR while the ambulance is en route. Trenin was not our only child, making the situation even harder. When something went wrong. someone had to go to the hospital with Trenin and someone had to stay and care for Kaiden and Kearsley.”

Trenin has had two major airway reconstruction surgeries at Cincinnati Children’s Hospital. The first one failed, which is not uncommon. The second surgery was in 2020. “We were hopeful that this surgery would allow Trenin to no longer be trach dependent, but we were not 100% confident,” Tendra said. As it turned out, he had to remain on the trach a while longer.

On November 14, 2021, the Duffs had possibly the scariest night of their life. Trenin had pulled his trach out, and the stoma (trach hole) started to close. It was the first time his trach could not be put back in. The silver lining was that Trenin showed no distress and appeared mad at his parents for waking him up. They hurriedly packed their bags and headed back to Cincinnati. Trenin was admitted for a week-long trial period with no trach. The Duffs happily came home on November 20, 2021, this time trach-free!

The boys have participated in multiple therapy sessions a week since shortly after birth. “All of the therapies and therapists have been a blessing to our family, but there is one place that does stand out among the wonderful facilities and people,” Tendra said. That place is Theraplay, where the boys receive hippotherapy (therapy with horses) twice a week.

“We are beyond grateful for the therapists and their expertise in helping Kaiden and Trenin reach their full potential. Everyone at Theraplay, from the unpaid volunteers to the administrative staff and therapists we see weekly, is focused on one goal--providing the best place for our boys to receive therapy services. Not only is the process streamlined to help overwhelmed and sleep-deprived parents, but the friendships we have made in the waiting room with other parents are a bond like no other.”

Going to church every Sunday is the Duff’s most significant tradition. The boys did not attend services for most of the first 3 years of their lives.

Kevin or Tendra would stay home, and the other went to church with Kearsley. Now the entire family can attend church. Church is a beautiful place for the Duff’s spiritual health, but it also allows the boys to put all the skills they have learned in therapy and school into practice. While the boys still require a lot of patience during the service, they are learning to sit quietly and pay attention to what is happening around them.

The family has crossed many milestones in the almost seven years since Kaiden and Treinin were born, but leaving the house is still akin to a military operation. There are no fenced-in playgrounds nearby, so going anywhere is challenging for the whole family. Trenin is still not walking independently, so someone must be with him. Kaiden is 100% boy--walking, running, jumping, and climbing are what he wants to do at the playground. Unfortunately, he doesn’t understand safety and what he should and shouldn’t do, so he requires the same amount of attention as Trenin when they are both playing.

In January of 2022, Tendra stumbled upon the opportunity to return to the workforce. “I learned about an attendant care program under the Aged and Disabled waiver that would allow me to be a paid caregiver for the boys. Once I started sharing the information with other parents and therapists, David Mitchell, the president of Guardian Care, asked if I would be interested in working as the company’s community liaison. I accepted the position, as helping others is my passion, especially families with special needs children.”

Guardian Care is a home care company that helps families get additional in-home services for their disabled loved ones. “I know what it is like to feel overwhelmed and need a break for some self-care or just time to put away the laundry that has been folded in a basket for two weeks,” Tendra said. “Guardian Care helps families do both. I now have more friends across Indiana than I would have imagined. I would never have been able to meet and talk with so many special needs families had I not taken this position. I can now help spread awareness about diagnoses I would have never heard of before.”

Tendra is busy, but her passion for advocating for others does not stop with her boys or job. Tendra is a founding member of the Westfield Schools Special Education Parent Advisory Council (SEPAC). The group’s vision is to create an educational experience for all students of the Westfield Washington Schools that meet their unique learning needs, allow them to make meaningful progress toward goals with appropriate services and supports, and aid them in developing “life-ready” skills.

Tendra’s pastor at Christ United Methodist Church asked her to help start a special needs ministry Providing a space for people to explore their faith without worrying about their children and a place for kids to learn about Jesus is just a nobrainer for her.

Tendra’s advice for families is, “Having a diagnosis will only help you travel down the appropriate paths to get your child the resources they need to reach their full potential. It does not define your child and their potential. Your child is labeled by their name and Down Syndrome is just an ingredient that is part of who they are, and who they will become.

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing it is stupid.” Albert Einstein.”