A young child, whose birth defects hinder her speech, says “boat” when she meets the family’s Bayliner.
STORY BY JENNIFER CHESAK, PHOTOS BY ROBERT GLOVER
Alexi settles next to her mom in the rear-facing lounge seat of the family’s Bayliner 185 Bowrider. Her sister takes first-mate spot, and brother wrangles Cheaha, the dog. While her siblings giggle with excitement as they board the 185, Alexi quietly tinkers with a tangled old Slinky that should have long since been tossed in the trash. She runs her fingers over the jumbled coils, her face wearing an expression of total focus. Unlike her siblings, Alexi will not smile until the boat is underway.
Less than a year ago, Alexi had stood hand in hand with her parents, Robert and Angela, at the local boat dealership while her father discussed making an offer. When the salesman unveiled the Bayliner 185 Bowrider, Alexi said one unmistakable word: “boat.” Her parents had no choice but to buy the shiny new object—that word was one of only a few she’d ever said. The situation felt like a miracle to the Downings, who had never heard their youngest daughter speak a word unless it had been practiced over and over again, like “bath.”
When the Downings took delivery on Fort Loudon Lake in Knoxville, Tennessee, Alexi said the magic word again as her father carried her down the dock and onboard their new Bayliner. That second time, though, she used her finger to point to her chest first: “Boat,” she had said, and more specifically, “My boat.”
“Who would’ve thought, a boat…” Angela says, lifting Alexi into a more comfortable position. Alexi continues to fiddle with her toy, seemingly oblivious. “She’s like, ‘Let’s just boat,’” Angela says. Sure enough, when Robert shoves off from the dock and gently pushes the throttle, Alexi’s head pops up. Sandwiched between two rosy cheeks is a smile. Oh, and that scrambled Slinky? It takes refuge on the 185’s floor.
Alexi was born with a rare birth defect that, at first, appeared only physical in nature. After several reconstructive surgeries, the doctors had told her parents that she would be fine. However, at 12 months, Alexi was still rather immobile. She was also unable to express herself by pointing or rambling, as infants often do. Instead, out of frustration, she began injuring herself. “When she began hitting herself, it was devastating,” Angela says. “She knew what she wanted to do with her hand but she couldn’t do it.” For months and months, the Downings traveled from doctor to doctor, specialist to specialist, but the medical community remained perplexed about Alexi’s condition.
At 18 months, Alexi was still unable to speak or walk. Her parents took her to the Mayo Clinic and finally—through DNA testing—the doctors discovered several anomalies on the left side of her body, many of which interfere with brain function, especially mobility and speech. A team of physicians diagnosed her with a rare autosomal recessive syndrome. The doctors have yet to pinpoint the exact nature of her syndrome or a prognosis, but through further DNA testing, the Downings are hopeful they’ll know more in the future.
“ALEXI IS SENSORY-SEEKING … SHE’S MORE CONNECTED WITH EVERYTHING WHEN SHE’S ONBOARD, ALL THE STIMULI. THE BOAT ROCKING IS GOOD FOR HER.”
In the meantime, the family’s main concern is Alexi’s quality of life. Upon learning of the diagnosis, the Downings jumped right into a plethora of treatments. They tried everything from physical therapy to water and horse therapies. But after they bought the Bayliner, they realized that what really helps Alexi is to move and, specifically, to move across the water.
“Alexi is sensory seeking,” Angela explains. “She’s more connected with everything when she’s onboard, all the stimuli. The boat rocking is good for her.”
Aside from bringing joy to Alexi, the Downings discovered the Bayliner actually serves as a reprieve for the whole family. “Boating allows us and Alexi a sense of normalcy,” Angela explains. “When you have special needs kids and kids who aren’t special needs, it’s hard to find something that everyone can do together. I like that we all have fun on the boat and that it’s family time.”
The Downings are thankful the Bayliner has helped them add to Alexi’s progress report. “What I’ve learned about Alexi,” Angela begins, “I was once told that with our kids we want to have this control, but with special needs kids you have to let go of some of that control and keep thinking outside of the box. Who would have thought…,” she says again, shaking her head. “A boat.”
Robert, who works as the assistant chief financial officer for a hospital network, had decided to buy the Bayliner because the family had recently gone through two relocations. Those moves unfortunately involved the separation from the support system of extended family, but luckily led them to comprehensive medical care in the Knoxville area. The Bayliner was meant for filling up weekend time the family might normally have spent travelling around visiting various family members and friends. “We knew we wanted to be on the water,” Angela says. “Robert’s such an outdoor guy.”
The Downings chose a Bayliner from Sea Ray of Knoxville because of the brand’s reputation. “Bayliner has a good name,” Angela says. “And we wanted to buy from a dealer who understood—that especially with a special needs child—we couldn’t be stuck out on the lake with a dead engine.” General Manager Mike Marcum witnessed firsthand the joy the boat brings to Alexi and her family, as he was on the dock when Alexi first called the Bayliner “boat.”
While reliability played an important role in the Downing’s choice, they were also thrilled with the amount of room and the functionality. “The cost, with the options—it’s a nice family boat,” Angela says. “We’re very practical people and we have to be,” she adds. “We’ve got medical bills all over the place.”
The Downings take another spin on the lake and then tie up at a nearby dock to let Cheaha use the facilities. Alexi doesn’t want to leave the boat. She retrieves her Slinky and shuffles it in her hands. Robert helps her get settled on the swim platform so that she can dangle her feet in the water. Her siblings join them, and the trio kicks the water, splashing their dad.
Suddenly, the Slinky drops into the lake and disappears before Robert can grab it. For a second, no one breathes. All eyes turn to Alexi and follow her gaze. She simply kicks and smiles at the water, mesmerized by the newly formed rings left by the hunk of wire sinking below the surface. No tears. No hitting herself in frustration. What is there is a bright grin, which not even a lost toy could cloud.