Dancing with GraceOctober 11, 2019
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Story by Allen Laman
Photos by Traci Westcott
On a warm, late-summer afternoon, 3-year-old Grace Alexander outstretches her little arms and twirls her tiny body in a circle. She’s a ball of energy, a pink-loving princess, and an aspiring veterinarian technician, all rolled up into one electric toddler.
On this day, she’s enjoying recess at Holland Elementary School in her own world. Giggling, her movement stops. But her eyes continue to dance.
The adults in Grace’s life use different images to try to make sense of her condition. Her mother, Noriah (Hendrix), understands that it could be similar to being in a fog that suddenly clears when her daughter focuses on objects. The girl’s low vision teacher, Julie Bryant, believes Grace’s vision could appear choppy, as if interrupted by constant blinking.
They want to understand. They’ve tried to understand. But to this day, no one is positive of what the world looks like to little Grace.
She isn’t blind. She has congenital nystagmus, a visual impairment in which the eyes make repetitive, uncontrolled movements.
Grace’s parents — Noriah, and her father, Jay — and teachers have their understandings of the impairment that will be with her for the rest of her life. Grace sees it in her own way.
“What do we call your nystagmus?” Noriah, asks with a smile.
“Super power!” Grace responds, bubbling with joy. Because no matter what, it’s never going to stop her.
Grace can’t catch a ball, but she can point out different body parts on a small sheet of paper in her Holland Elementary preschool classroom. Vision tests have revealed that she could spot a train chugging along through a dark night, but also show that her proprioception — or sense of self-movement and body position — is off. Her depth perception is also hindered.
“She runs a lot into walls and door frames,” Noriah says. “And we get bumps and bruises.”
Therapy has helped. Her glasses help, too. She’s worn them since she was 11 months old. Sometimes, she can watch television from the family’s couch at their home in Huntingburg. Other times, her face will be inches away from the screen, or practically pressed up against whatever it is she’s looking at.
What makes nystagmus tricky is that the condition affects people differently.
“It’s one of those things where ... unless you have that disability, it’s really hard to understand,” says Julie, who works for the Exceptional Children’s Co-Op. It’s also hard for those who have it to describe it to those who don’t, she says.
Her parents do not know if Grace will be able to drive a car. They fear she could be bullied over her impairment. If spotting on one of her retina grows, it could cloud her vision completely, and the spotting would then require removal.
These things might make Grace’s future seem murky. In some ways, it is.
For now, though, she’s growing up thinking she’s just like every kid. It’s rare for her to not be laughing or smiling, as she’s surrounded by a network of people who will never lose sight of the full life and bright future that lies ahead of her.
“Whatever Gracie sets her mind to do, that’s what we will support her doing,” says Becky Hendrix, Grace’s grandmother.
Nystagmus is caused either by a problem with the way the eye sends messages back to the brain, or how the parts of the brain that deal with eye movement make sense of the information.
Grace’s nystagmus stems from one miswired connection in her brain, an organ that plays host to millions of other connections. It isn’t caused by an underlying condition, and it cannot be cured. The constant fluttering can become more pronounced when she is tired, or stressed, or angry.
Receiving that diagnosis was harder than you’d think. Not knowing what their daughter was facing — and how she developed it — has been perhaps the hardest part of Grace’s journey for her mom and dad.
At first, Noriah shouldered the blame for Grace’s nystagmus. She feared that something she did during her pregnancy could have led to the condition. Even after doctors reassured her it was not her fault.
“I think I always will,” Noriah says of the weight she carries.
Noriah noticed something was wrong with Grace’s eyes shortly after she was born. A doctor told her her daughter was fine, and that the nystagmus would fade as her eye muscles strengthened. Still concerned, Mom took her daughter to another professional to get a second opinion.
That led to the family learning that the disability will always be part of Grace’s life. A doctor told her she will likely face hurdles because of the nystagmus, but he also said he’d be there to help along the way. Work with Visually Impaired Preschool Services began immediately.
“I sat there and cried a lot,” Noriah recalls of the diagnosis. “And I could still cry today for it.”
But the Alexanders do not treat Grace like her life is less than anyone else’s. They are doing everything they can to make sure their daughter has all the tools she needs to succeed.
She’s undergone many tests in her short life, and she’s participated in various programs that help her combat developmental delays and help her parents understand what she was and is still experiencing.
“It seems like a lot of it hasn’t really phased her,” Jay says.
“To her, it’s normal,” Becky adds. “She doesn’t know any different. We know different, but she doesn’t.”
Grace visits Riley Hospital for Children in Indianapolis twice a year for exams, and she also undergoes vision and physical therapy with Julie and other professionals at preschool. Julie says it’s important to note that the condition does not affect Grace’s ability to learn.
She says that some think that if you have a vision issue, you’re not capable of functioning like everyone else. And that’s just not true.
“That’s a total myth,” Julie says. “My students are just like everybody else. We work very hard here in the school to make those students the same as everybody else. They may have some things adjusted, but they’re doing the same things.”
As she’s grown, Grace has also begun explaining how she sees to her parents, revealing that she can see more than Mom and Dad had ever imagined. Her vocabulary and speech have exploded recently, and her once-shy personality has been replaced by a confident swagger.
On top of that, she’s excelling at day care and preschool. Noriah notes that her teachers have been “just astounded by what she’s accomplished.”
Swimming lessons, singing and dancing are among Grace’s favorite pastimes, and despite her vision problems, she’s not afraid to try new things. Last year, for example, she rode a roller coaster at Holiday World. She loved it.
On a summer trip to Florida, Grace walked on a beach and waded in the ocean for the first time. She never wanted to leave.
In the past, Grace would isolate herself, likely because the nystagmus causes objects around her to appear as though they’re moving faster than they really are. Now, however, as she grows more comfortable with her surroundings, she has begun playing with other children more than ever before.
All of this comes as a relief to Noriah and Jay. When she was a baby, no one could tell them how far back the nystagmus would set Grace. But as she has grown, she has flourished.
“It was a relief knowing that we got her in the right stuff to help her excel like that,” Noriah says.
“And as quickly as she’s done it,” adds Jay, with a snap of his fingers.
The family hopes this story will bring awareness to the condition, which affects one in 1,000 people. Through everything, they have collectively leaned on their faith. And they believe Grace can grow up to be anything she wants.
“God made her the way he did for a reason,” Jay says. “We just don’t know why yet.”
In the meantime, they’re doing everything they can to make sure their little hero dances her way through a complete, happy life.
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