Pell City teen embraces life despite challenges
Story by Roxann Edsall
Photos by Mackenzie Free
Submitted Photos
To know him is to love him, say family and friends. They’re describing 15-year-old Caden Nelson, a young man with profound physical challenges but equally profound gifts. At first meeting, it will likely take a bit of effort to understand his speech, but his words pack such enthusiasm and joy, the effort is well spent.
Describing an encounter with Caden is like trying to describe light. He is both complex and simple. His thoughts are deep, but his activities are childlike. He is a beautiful combination of youthful exuberance and parental encouragement. He is both challenged and accomplished. He entered the world with a mountain of challenges before him, yet he describes the mountains with wonder and determination.
Those who meet him are blessed by his ability to fill the room with joy. That joy comes from his appreciation for life and an intense gratitude for those who have encouraged him and who continue to support his journey. This is Caden’s story.
Caden was born prematurely at 30 weeks, weighing just over three pounds. His mother, Anna, was under the care of a maternal fetal specialist in Miami, Florida. Her prenatal testing had revealed that the baby was suffering from a bladder outlet obstruction, which required doctors to insert a shunt through the amniotic fluid to help his body flush fluids. A host of additional medical issues were discovered at birth.
“Caden was not expected to survive,” says Anna. “We were told when he was five days old and had gone for his first surgery that he would bankrupt us physically, emotionally, financially and spiritually. We knew about the bladder obstruction, but after he was born, we learned he had paper-thin abdominal muscles, neuronal intestinal dysplasia, prune-belly syndrome, scoliosis and kyphosis. The doctors said we should just let him pass away.” When Anna and Chad rejected that option, and Caden outlived the doctor’s expectations, doctors stopped issuing life expectancies.
Unlike most teenagers, Caden has never eaten a hamburger or grabbed a handful of cookies, never hung out with friends to share a pizza. In fact, he’s never taken a bite of anything. Neuronal intestinal dysplasia type B essentially means his intestinal system does not work. Because of that condition, he cannot digest food, so it is fed through a central line which goes through one of the veins near his heart.
All this, he takes in stride and doesn’t let it dampen his appetite for life. “Making people happy is a good day for me,” Caden says. He talks openly about his faith and his gratitude for life’s journey. “Jesus is like my first Dad before I met my Dad,” he adds. “He’s helped me all my life through all my surgeries on my back and with the halo surgery.”
It is difficult to imagine all the surgeries in Caden’s young life. They began with exploratory surgery at five days old, spinal fusion surgery at seven months old, more surgery at 10 years old to put rods in his back, which required a halo for six weeks to keep his back aligned so he could heal properly. After those rods broke, he required additional surgery to replace them.
“He can walk but has a walker and a wheelchair to help sometimes,” says dad Chad. “If we are going somewhere like the zoo or the mall, we take the wheelchair. If he just needs to walk from the house to the car, he can use the walker.” Anna adds that it is crucial that he not fall, so they must be very careful.
“He has some breathing issues because the scoliosis and kyphosis caused restrictive lung disease,” explains Anna. “If he gets sick with a cold or something, it’s harder for him to get over it.” You wouldn’t know it on a typical day, though, she says, other than he gets winded walking any distance.
Most days, he doesn’t walk far. School comes to him in the form of Anna’s cousin, Kyla Dunn. Everyday Lala, as he calls her, comes to the house to take care of him and his younger sister, three-year-old Alyssa, while Chad goes to work as a firefighter. Anna does contract work as a speech therapist.
When Alyssa goes down for her nap, Lala and Caden, who is in 9th grade, get to work. “Initially, I was just going to help a couple of days a week,” says Kyla. “But I was needed, and I believe with all my heart that this is the ministry God put me in. I’m grateful for every day we have.” Sitting on the arm of her chair and beaming at her, Caden says, “I love school, and I love Lala. We’ve been together almost 13 years.” He says he wants to be a caregiver like Lala when he grows up.
“We’re just happy to be celebrating another birthday with him,” Anna adds, talking about his summer birthday. “He still picks out what kind of cake or cupcakes he wants. He just can’t eat them.”
Usually given the choice to have a birthday party or to go on a trip to celebrate, most often he chooses to travel. He’s been on many trips that coincided with out-of-town specialist visits to New York City but has also taken the Christmas train out of Blue Ridge, Georgia, gone to both Disney World and Disneyland, and last year went to Branson, Missouri and rode the train to the Ozarks.
“We try really hard to give him all the experiences we can,” Chad explains. “His pediatrician asked him recently if there was anything else he wants to do that he hasn’t done already, and he couldn’t think of anything.”
One thing Caden checked off his list recently was being baptized. He’d never done it because, even though he had professed his faith, there was a problem, and its name was water. Because he receives his nutrition through the central line in his chest, known as a TPN (total parenteral nutrition), that line must stay dry to keep from getting an infection from bacteria. For that reason, he’s never been in a pool, a lake or a bathtub.
Never shy of a challenge, Caden insisted on baptism by immersion. “I wanted to do it right, the way God wants it to be,” says Caden, adding, “Mama was terrified because me and water don’t mix well. But I took it like a pro.”
“It was definitely a challenge,” says Chad. “I used Tegaderm (a waterproof wound dressing) under his line, put gauze over it, then covered it again with the Tegaderm so it was double layered.” This milestone made for a perfect gift for Dad, as it occurred on Father’s Day. A photo of the special event shows a very proud Caden in a victory pose after coming out of the water.
Anna and Chad are intentional in doing their best to give him experiences like those available to their younger children, 11-year-old Luke, 7-year-old Jacob and 3-year-old Alyssa. They also hold him to the same rules. “He just got ungrounded yesterday and got his PlayStation back,” says Anna. “In the beginning, I was worried about getting on to him, but now he’s held to the same standards as the other children.”
Anna says he knows he is different and that there are things he cannot do. “Regardless of his situation,” she says, “he stays so positive.” Chad echoes the admiration for Caden’s positivity. “Caden has changed my life. With him sharing his positive attitude and love for Jesus, he’s definitely made me a better person.”
“He is just very sweet and rarely has anything negative to say,” says Anna. “He normally doesn’t complain of pain or anything like that.” Chad agrees. “When he comes in the room, everyone is excited to see him. He loves to laugh and has a great sense of humor.”
His favorite things are trains, video games, his dog, Cooper, and his family and friends. Caden also loves singing and dancing and has recently sung a solo in church. The chance for the family to be in church together is a recent joy for Chad and Anna. First Baptist Church Pell City added a special needs class to their offerings this past year, allowing the family time to worship together while making sure Caden had opportunities that fit his needs.
Going to his class makes Caden smile. Dan Gilliland is one of his teachers at church, and he can’t say enough about being with Caden.
“He always gives the other students the best markers and serves others first,” says Gilliland. “From the minute he joined the class, he changed the lives of everyone in this class and all who meet him. Aside from my mother, no one has impacted my life by showing the way Jesus wants us to live more than Caden Nelson.”
Gilliland has a message for others. “If you get a chance to meet him, do it. He’s a joy, and he will pass some joy to you!”
And you’ll likely get a hug.
Special Needs Class
First Baptist Church Pell City
Story by Roxann Edsall
Photos by Mackenzie Free
When Dan and Paulina Gilliland started attending First Baptist Church Pell City over four years ago, they knew they wanted to be a part of a ministry that benefitted families with special needs. Dan had 40 years of experience working with special needs youth and adults in Shelby County and in Mountain Brook schools and as program director at Easterseals Camp ASCCA. Paulina, a registered nurse, worked with him at Camp ASCCA for several years.
The church leadership had been working on putting together a team to offer a special needs class, and the fit was right for the Gillilands to help support that vision. For nearly a year now, special needs students have had a place where they fit in, a place focused on meeting the needs of individuals with varied abilities. The class is regularly attended by three to four students.
“My wife, Paulina, is the core, the lifeblood of the class,” says Gilliland. “She holds everything together, gives us all assignments for the week.” Four other dedicated teachers – Jennifer Jensen, Joe McGaha, Winford Hill and Tina Stallings – round out the volunteer staff.
Chad Nelson is parent to one of those students and he describes the challenge of attending church prior to this class offering. “When they started the class, it allowed Caden to have a place, a group of teachers and friends that he loves and is excited to see,” explains Chad. “It allows Anna and me to attend worship, just the two of us without kids.”
Anna Nelson adds that other churches never seemed to “fit” their family. “It just never felt like there was a place that fit all of us,” she adds. “But I don’t think that population is being overlooked intentionally. Unless people are in a situation where they have kids with physical or mental limitations, that group gets overlooked inadvertently. This program at First Baptist could be a great outreach program for the community.”
For more information or to enroll your student in the class, email Rev. Chris Dewaal, minister to children and families at cdewaal@fbcpellcity.org or call the church at 205-338-9444. The class is held each Sunday at 10:30 a.m.
