When Lindsey Norris crossed the finish line at the Fair Hill Starter Horse Trials in Maryland earlier this month, earning second place in her junior elementary division, the 15-year-old’s beaming smile and her cheering mom were just one iteration of a scene that happens countless times at every horse show.
But Norris’ victory was harder-earned than most, and that shared moment of pride between child and parent deeper than a glance would indicate.
Norris, of Bel Air, Maryland, has White Sutton syndrome, a rare genetic condition that causes developmental delays, intellectual and physical disabilities. For Norris, those include muscle weakness, speech, motor-skill and other difficulties. She didn’t walk until she was 2, or speak her first sentence until she was 3. That she has been riding since 5 and competing successfully against her peers as a teen is, her mother says, a reflection of what an amazing kid she is, and the lifetime of work she has put into intensive physical, occupational and speech therapy.
“Any time she succeeds, you know how much work went into it,” Kim Norris says. “For a typically developing child, you’re excited for them when they cross the finish line. But this is a kid who has overcome so much physically and mentally, and to be successful? There are no words for it.”
Lindsey has spent much of her life in doctors’ offices and therapy appointments, along with enduring multiple hospital stays, all byproducts of having a condition doctors misdiagnosed and struggled to understand the complexities of for years. Some doctors told her parents Lindsey might be able to walk some day, but not do much more. It wasn’t until 2016 that White Sutton syndrome was discovered and named, with Lindsey’s case as one of the first handful of only about 50 identified in research.
Lindsey shares credit for her riding success with her horse, Painted Arrow, an 11-year-old pinto of unknown lineage and endless patience.
“Archer helps me learn new things and get confident,” she says.
Kim and Lindsey both ride the stout gelding, each taking one lesson a week with their trainer, Morgan Cillo Connelly of Onward and Upward Eventing in Aberdeen, Maryland.
“Morgan is infinitely patient and kind, but knows just how far she can push [Lindsey],” Kim says. “There’s just no describing her, she’s amazing.”
They work together teaching “Archer” the ropes of eventing and say he’s taken to it fabulously, despite having been a western cow horse most of life.
“Dressage and straight lines are a challenge, but we’re getting there,” Kim says. “He loves the job and is very eager to learn.”
Although therapeutic riding was never one of the forms of therapy Lindsey participated in—her introduction to horses happened at age 5 in a comically stereotypical way (“We put her on a pony at the fair and couldn’t get her off of it,” her mom says)—riding has played a big role in helping her mitigate some of the symptoms of White Sutton syndrome.
“Her brain has a hard time telling her muscles to contract and move, and therefore her muscles are overly relaxed,” Kim explains. “This makes things such as standing, walking, jumping, holding the reins, steering, etc., very difficult for her. One of the many benefits of riding is that it works to increase her fine-motor control and makes her stronger.
“Riding a horse also allows her freedom that she doesn’t get by herself. Archer can carry her great distances and jump on the cross-country course.”
Connelly often works on core-strengthening exercises with Lindsey and helps her develop the fine-motor reflexes used to steer a wiggling horse.
“Getting Archer straight to the jumps,” is a challenge, Lindsey says. “My muscles don’t work as well. My brain can’t think, and I get off task.”
Lindsey’s intellectual disability makes learning dressage tests and memorizing jumping courses challenging. She spends lots of time at home practicing her dressage tests to learn them. Using her Individualized Education Plan from school—a document that lays out the program of special education instruction, supports and services she uses to progress and thrive—her family requests special permission from event organizers to have Kim or Connelly read her dressage test during the competition. That, however, is the only accommodation the family requests at horse shows.
From trotting around her first horse trial in fits and starts to cantering entire courses and finishing on her dressage score at Fair Hill, Lindsey is working hard to improve her riding and her partnership with Archer.
“I want to move up, maybe next year,” she says, but only if she and Archer are ready.
For her mother, watching her teenager compete on equal footing with her peers is even better than being in the saddle herself.
“I’m quite happy being the show mom, helping her. I love seeing her succeed,” she said, choking up. “She doesn’t get many opportunities to shine. Life is always tough for her.”
And as for herself, if Kim could go back and tell herself something five years ago, when her daughter received her White Sutton diagnosis?
“Don’t believe the deep dark voices. She can do it. She can succeed. Just keep getting up and moving forward.”