Apple of his eye: Children inspire visually impaired runner after lifetime of heartache
Tuesday, Jan. 29, 2019
GILBERT – As he sifts through a Ziploc bag of memories, Ryan Davies can’t keep from smiling.
One at a time, he pulls medals from the gallon-size bag, carefully unwinding the polyester ribbons to reveal his metal mementos. There are dozens to unpack.
Since he began running three decades ago, Davies has kept almost all the hardware from his many races, ranging through 5Ks, 10Ks, half-marathons up to the 26.2 miles of marathons. He has traveled far to build his collection.
There’s a red Avengers medal, from an event held at Disneyland. There’s a green medal from the “zombie race” in Kansas City, where volunteers throw bags of flour at the participants. (“If you get hit, you lose,” he said, laughing.) There’s a medal engraved with a Cincinnati Reds logo, from a race that included a trot around the warning track at Great American Ballpark.
The Ziploc collection resembles a multicolored treasure chest full of tokens from some of the happiest moments of his life.
“I have memories with each one,” Davies said.
Davies runs his long fingers across each medal’s shiny surface, feeling its ridges and grooves. One by one, he brings the medals close to his face, so close they almost touch his nose. Then he squints, as if he were inspecting the finest details of a precious heirloom.
This is the only way Davies, 44, can see his keepsakes well. He has been partially blind since he was born.
His battles with visual impairment haven’t been the only adversity in his life. His oldest child, 7-year-old Makenzie, was born with the same eyesight challenges he has. His son, Grayson, entered the world with a far more crippling medical condition, and left it far too soon.
Running doesn’t tire Davies, a stay-at-home father. Instead, each stride replenishes his strength.
It has helped him cope, heal. It’s a big reason he can be happy on this day, as he recounts his life; why, when most others would still be soaked in tears, he can keep smiling despite the pain.
As Davies pulls another medal from the bag, it slips off the clasp connecting it to its ribbon and falls to the carpet. He picks up the loose piece, tries to reassemble it, then hands it to the reporter next to him.
“Can you clip that back on?” he asked. “You have the vision.”
“1st Place” is etched on the back of the medal, from when he won his age group in the first race he ran after moving to Arizona from Missouri almost two years ago. It’s his reminder that, despite the many tasks, big and small, that he can’t complete on his own – from getting behind the wheel of a car to going grocery shopping – he has to keep pushing forward, driven by a purpose buried deep in his aching heart.
It wasn’t until Davies was 3 months old that his mother, Beverly, finally received the diagnosis from doctors.
Ryan had aniridia.
The rare disorder, as a top Kansas City eye specialist explained to her in 1974, prevents the iris – the colored part that encircles the pupils – from developing. At first, doctors weren’t sure just how much vision her son would have. They feared that by 20, he would be completely blind.
“It was just an awful lot all at once,” Beverly Davies recalled. “Everybody was concerned about him, wondering about a future.”
Only one in every 50,000 to 100,000 people worldwide are born with aniridia, according to the National Institutes of Health. No one else in the Davies family suffered from the genetic mutation, which makes each eye look like a dark moonless sky, as if his pupils are constantly dilated.
Davies grew up in Oak Grove, Missouri, a quiet community east of Kansas City where Beverly, a former Kansas Jayhawks basketball player, and her husband, Ron, an Army veteran, raised their two boys and two girls. The second-youngest of the group, Davies could see well enough to go to school and even read, if he positioned his eyes close enough to the pages.
But he had a hard time fitting in.
Unlike his brother, Davies couldn’t play many sports. He tried the snare drum in marching band but struggled to make out the notes on the sheet of music. In class, he was the lone student who needed enlarged-font textbooks. At the movies, he was the only one who wanted to sit in the first row.
Of course, Davies was grateful to not be completely blind. But his partial eyesight also revealed an unfortunate truth. In a lot of ways, he was all alone. There was no one around him who really understood what he faced.
“You always have (people ask) the classic, ‘Did you ever think about getting glasses?’ ” Davies recalled, letting out a nervous laugh. “It bothered me. It made me self-conscious.”
Running became his release.
Davies’ uncle, Wayne, an avid long-distance runner, nudged him toward the sport. Wayne lived in Blue Springs, just west of Oak Grove, in the rolling plains. The place offers a perfect setting for miles-long treks through the hilly countryside, which turned out to be a liberating exercise for a teenager who couldn’t drive, ride a bike or conjure up much self-esteem.
“By running, I reduced a lot of that stress,” Davies said. “It freed my mind and I felt like I was doing something that a lot of people don’t want to do. It kind of made me feel somewhat important. Like I’m a part of something, I have somewhat of a niche.”
Of course, Beverly still worried about her boy, who would often return to the house with cuts and bruises after tripping over uneven sidewalks or a pothole he couldn’t see.
One day, she answered the door to find three of Ryan’s classmates at her front steps. He had sliced his head open on a street sign near school – the faded scar along his hairline is still there today – yet had refused their offer to drive him home. He didn’t want to get blood on their truck.
“You have to let him get some independence,” Beverly said. “But it was still very frightening. As a young man, he seemed fearless.”
But Davies is the first to tell you that his courage only applied to running. Everywhere else in his life, he said he felt like a “loner,” moving as quietly and carefully as possible, trying not to embarrass himself as he searched for even the smallest slivers of confidence. For a long time, he strained to see exactly where he belonged in the world.
Like father, like daughter
Makenzie Davies is dancing, the lights in her shiny pink Sketchers flashing with each step.
Soon, she’ll be running the mile-long Kids Rock course, one of the several events that make up the Rock n’ Roll Arizona Marathon series. A day from now, her dad will be running, too, although he will tackle the half-marathon, which will end here, at Tempe Town Beach Park.
But right now, father and daughter are hand-in-hand, jumping, swinging and grooving to the cover band playing all the classic oldies – “Love Shack,” “Brick House,” “Play That Funky Music.” Makenzie, wearing glasses and a big silver bow in her hair, loves them all. She really loves that she’s getting to dance with her dad.
“Dad is my best friend ever,” she said. “The best thing we do is we play.”
Davies met his wife, Kayla, during a charity kickball tournament in Kansas City in 2008, after he had graduated from Southeast Missouri State with a degree in child and family development.
In past relationships, Davies’ eye condition had been a deal-breaker – “Well, what other bomb do you have to drop on me?” a previous girlfriend had asked him – so he was apprehensive. On their second date, he coaxed Kayla to walk the several blocks between a movie theater and an Applebee’s restaurant. He didn’t want her to know he couldn’t drive. He didn’t want her to know there was anything wrong at all.
“She still teases me to this day about that,” Davies recalled. “Because she knew about my vision.”
By the fifth date, he felt comfortable enough to share the truth. It turned out that Kayla, who was studying to become a nurse practitioner, already knew all about aniridia, having written about it in a report for school.
She didn’t care about Davies’ weakened eyes. Less than a year later, they were engaged.
Kayla always knew Ryan liked to run. It wasn’t until they moved in together, though, that she fully understood that he needed to run. Back then, he sometimes finished marathons in close to three hours, just minutes shy of qualifying for the Boston Marathon, a lifelong dream.
“He would run every day, up to 13 miles a day,” she recalled. “I was like, ‘Whoa, I wish I could run just one-fourth of what he ran.’ ”
Kayla had another, much bigger wish. Like Davies, she wanted to start a family. The couple knew it was a bit of a gamble: A 50/50 chance existed of their children having aniridia, too.
“That didn’t stop us for a minute,” Kayla said.
Of course, the decision was never easy. Not when one parent knew the obstacles of living with limited sight and the other knew there were only so many ways to help. They desperately wanted a perfectly healthy child but agreed that no matter what happened, they would get through it together.
So after Makenzie was born in December 2011, they waited, anxiously. When the doctor entered the room, Davies didn’t need perfect vision to see what was coming.
“I could tell when he came in and he said, ‘Well, I got the results back,’ and (there was) just that moment of hesitation,” Davies recalls. “I was like, ‘She has aniridia, doesn’t she?’ ”
His greatest fear had come true.
“I didn’t want that,” Davies said, holding back tears. “Because I know the struggles. I know. Working hard, constantly. Constantly proving yourself, that you have the intelligence, that you have the physical ability.
“A lot of people said, ‘Well, at least she’ll have an advocate like you.’ I’m not used to that. I never really asked to be a leader. That’s too much pressure for me, because I’ve always followed.
“I don’t like that pressure because, what if I fail?”
It scared him to think about Makenzie facing the same roadblocks that he had faced. Unable to make many friends. Struggling to keep up in school. Not finding a good job. Always needing the help of others.
“I just don’t want my daughter to be somewhat tired inside,” he said.
Fueled by those fears, something inside Davies changed.
He didn’t want Makenzie to treat aniridia like a weakness. So, he changed his mindset, digging deep to find confidence he could pass on to his daughter. He helped Makenzie understand her limits, such as why other kids her age don’t have to use a support cane. But he also encouraged her to try — and stick with — things he never could growing up.
Even at her young age, Makenzie is gregarious and outgoing. She loves to talk about her Girl Scout troop – Mom is the troop leader – and all the cookies they plan to sell. And she goes on and on about her favorite game to play with dad. She calls it “Pop Pop Pine,” which it consists of Davies kicking, volleying and spiking a ball or balloon back and forth with her.
“He was just a great role model for her; you know, did activities with her to kind of blossom her,” Kayla said. “It just blows me away every day.”
Days like this – clear skies, perfect weather, Makenzie dancing without a care, soon to have a medal of her own draped around her neck – are special. Mom and Dad beam with pride as they watch their daughter’s exuberance. It’s almost as if nothing has ever been wrong.
Then, from the corner of his eye, Davies sees something. It’s a young boy, no older than 10, in a wheelchair, medical wiring and tubes wrapped around his ears and the back of his head.
The joy flushes from Davies’ face.
“Every time I see that,” he said, “I think about Grayson.”
A short life
Davies probably never will be able to shake the images from his head – how it looked as if somebody had lathered sunscreen all over his newborn son; the tiny box that doctors wheeled his infant son around in; the cab ride between hospitals; the Christmas lights in the lobbies; the Kansas City snow falling outside.
“You’re like in a daze,” Davies said. “You’re stricken.”
A few years earlier, the couple had tried for a second child. That pregnancy ended in a miscarriage. Then came Grayson.
Grayson was born in December 2014 with myotubular myopathy, a genetic condition passed from mother to son that impacts skeletal muscles and makes everything from eating and breathing to simple head movements almost impossible without the aid of machinery.
Doctors didn’t pinpoint the diagnosis right away. But after a relatively healthy pregnancy – Kayla raised the only warning sign, noticing Grayson kicked less than Makenzie while in the womb – it was evident right after he was born that something wasn’t right.
“I didn’t even push, he just came out,” Kayla recalled. “I just remember them pushing the code button and there being 50 people in the room within seconds.”
Everything was a whirlwind after that. Grayson was transported to Children’s Mercy Hospital in Kansas City, where doctors hooked him up to feeding and breathing tubes and gave his parents a grim prognosis.
Two years. That’s how long their son was expected to live.
Kayla: “They were like, ‘He won’t live. There’s no way he’s going to live. He’s going to be a vegetable, never be able to do anything for himself.”
Davies: “They said he was going to have brain damage. He’s not going to live long. Um, what is it called? DNR. Do not resuscitate. They said, ‘You should probably do that. That’d be best for him.’ But we wanted to give him a fighting chance.”
In the years that followed, the family experienced too many bad memories to count. There were the long nights when the baby monitor would go off, not for feeding but because Grayson’s throat needed to be suctioned of congestion his undeveloped muscles couldn’t clear.
There were the days, sometimes weeks, when one of the family members would catch a cold and be forced to quarantine themselves from Grayson and his weakened immune system. There were the times Davies saw snot clumping in his son’s nose and could tell that his baby was in more pain than usual.
When the paramedics would rush Grayson to the hospital, Makenzie asked who were the men who were taking her brother out of the house on a stretcher.
“Just imagine that, that lifestyle for a few years,” Davies said. “Not months. Years. I just felt so bad for my son.”
But that’s not how the family chooses to remember Grayson’s life.
For everything their son couldn’t do, there were small, triumphant moments that kept them going. They took to him to Kansas City Royals games and, after the family relocated to Arizona for Kayla’s new job in the oncology department at MD Anderson Cancer Centers, to spring-training games, too. Grayson loved Mickey Mouse and watched the cartoon character for hours on an iPad.
On one of Grayson’s toughest nights, Davies put a finger on his boy’s small, soft hand. Grayson gripped it back.
“He moved his head and he would just take my hand and move it up and down,” Davies said. “Despite him feeling horrid, he still interacted with Daddy.”
Grayson’s spirit takes Davies through the darkest of times.
“That’s just true strength,” Davies said. “I seek strength from him. It’s just been a role reversal almost. You think that the father would have strength and the son would look up to him. But I kind of looked up to him.”
Grayson died at age 3. In his short life, his family found inspiration, a new perspective. The challenges they face now, including the partial blindness shared by father and daughter, don’t seem quite as tough anymore.
“He just, he brought cheer to us every day,” Kayla said. “He was amazing.”
Attaining a goal
On a cool December day in 2017, Kayla Davies put the family’s gray minivan in park while her husband, having just finished the Buckeye Marathon, climbed inside.
She could tell by the beaming look on his face and the tears of joy welled up in his eyes that he had good news.
“I did it! I did it!” he said. “I qualified.”
A few months earlier, Davies had gotten some encouraging news. An organizer from the Boston Marathon had alerted him to the race’s visual-impairment exemption, which allowed runners battling blindness to qualify for the famous race with a marathon time of less than five hours.
Under normal circumstances, runners must finish a marathon in less than three hours, 15 minutes, to qualify for the Boston race. Davies had never been quite that fast and figured his window had closed. But then it was thrown back open.
His first crack at qualifying was the Wicked Marathon in Peoria in October 2017. The family still was new to Arizona then, though, and Davies’ body hadn’t adjusted to the nearly triple-digit temperatures registered on race day. He flamed out during the final few miles to finish in five hours, 13 minutes.
He still had doubts when he entered the Buckeye race two months later: “What if I sputter out again?”
“I tried to block that away,” he said, “but it just kept coming back. I didn’t want to start out too fast. I had to get that form down. If I get the right form and get relaxed and settle in, I can do it.”
Davies takes pride in his running form, how improved it is now from when he first began as a kid, when his flat-footed steps created a plodding noise – Thump! Thump! Thump! – at which others would snicker.
That day in Buckeye, he found a smooth stride and steady speed, gliding past mile markers well ahead of pace.
“I knew with a few miles left I was going to make it,” he recalled. “I got excited, teary-eyed.”
He crossed the finish line in four hours, 33 minutes, 12 seconds – nearly a half-hour faster than the qualifying time.
“He was so proud,” Kayla said.
On April 15, Davies will be one of 55 visually-impaired racers in the Boston Marathon, where simply finishing is no easy task. The 26.2-mile course is one of the toughest in the country, taking runners from the suburb of Hopkinton to Boylston Street, in the center of the city. Before reaching the finish line, runners have to negotiate the steep climb up Heartbreak Hill, considered one of the most difficult stretches in any American race.
Davies said he’ll run in memory of Grayson the whole time. But Heartbreak Hill, just a few miles from the end, will likely be the spot he’ll need his son’s strength the most.
“If I’m just not feeling it or whatever, I just think about Grayson,” he said. “It gives me a surge of energy. I mean, I think of those things and I get a surge of adrenaline. It motivates me.”
Davies can’t wait to add to his medal collection either, to bring home another shiny souvenir for his daughter to admire. And that’s why he has held on to all of these keepsakes in the first place: to inspire Makenzie.
Of all the medals he has received – there are so many that he has lost count – the only one missing is from a Disney World marathon he ran while Grayson was still in the hospital in Kansas City, the race in which his own transformation was complete. Until then, Davies had raced mostly for himself, as a way of escaping a world he could hardly stand. But from that race on, he started competing for his son, his daughter, his family. It has been his way of filling their world with more hope.
That missing Disneyland medal? He buried it with his son.
“I left that one with Grayson,” he said. Out of sight, but not forgotten.
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