HARPERS FERRY, W.Va. — Jake Hall runs every chance he can. He runs four or five times a week around town, notching about 45 miles a week during the past two years.
Lean and muscle-toned from the disciplined mileage, he also laces up for competitive races now, mostly marathons and half marathons, enjoying the physical and mental release, as well as the fresh air that fills his lungs along the way.
But Hall’s main endorphin rush doesn’t come from a steady pace of footsteps. His motivation is more than physical. Because everywhere Hall runs, he’s never alone. When he runs, he always runs for two. His 6-year-old son Thad leads the way, rolling along out front in a jogging stroller, an indispensable part of the athletic duo and with every step its inspiration.
Hall, a 32-year-old Harpers Ferry resident, is a wheelchair push-team runner with little Thad, known as Thaddeus, too. Wheelchair push-teams are a small but growing athletic phenomenon of running partners, where one enabled runner provides the kinetic power for a disabled comrade. But both runners compete as one.
For push-team Hall, the story involves a strong father propelled by the love of his little boy.
“Personally, running is a way for me to connect with Thad,” Hall said. “There is nothing else I can do to connect with him this way. Sure, I can hold him. He likes getting into a swimming pool — things like that. But this is me and him. I love it. He loves it. It’s father-son time.”
Thad was born with a mysterious, extremely rare genetic condition that has only recently been identified. Hall said his son is one of six or seven children in the world known to have the condition, which is so recently discovered that is doesn’t yet have a name.
“When Thad was born, everything for him initially looked healthy and normal. Everything looked great,” Hall recalled. “Then within a few weeks, the doctors were concerned. He wasn’t responding as they would expect. Then he never hit the developmental milestones of talking, moving for a child his age.”
Then a steady physical decline appeared. By four months of age, Thad began having seizures on a daily basis that have progressively weakened him. By his first birthday, the boy lost his ability to eat, prompting doctors to give him a permanent feeding tube. Over the last six years, Thad gradually lost his ability to move his arms and legs as the seizures continued. His immune system also weakened, bringing on numerous life-threatening bouts of pneumonia and intensive-care vigils.
“Thaddeus typically has rough mornings,” Hall said. “Typically waking up is a challenge. A lot of seizures.”
The routine of Thad’s daily care is systematic and time consuming — and stressful, Hall admits. His boy undergoes daily respiratory therapy. He wears braces on his ankles and hands for support. A therapist comes to the Halls’ home four times a week to provide physical and speech therapy. Waking up, just like changing and bathing, follows a particular process. Thad’s lack of muscle control makes it difficult for him to cough, so a simple cold would be dangerous.
“Some days are just plain hard,” Hall openly acknowledges what becomes apparent after a few minutes of conversation. But those hard days are when the father and son’s team running offers the most relief, and sometimes even crystal-clear moments of joy.
“Our running story together didn’t start until last year,” the father offered. “It’s been a long journey trying to figure out how to give Thad experiences that he can’t have for himself.”
The boy enjoys dips in the pool and therapeutic horseback riding. Hall suspended bungee cords from the ceiling of their living room that attached to Thad’s wrists, which lets his hands and body float in a way that offers him different ways to sit, stand and move — a sense of physical freedom.
But the boy lights up when it’s a day he’s feeling well and simply running with his dad.
“Caring for Thad is stressful — emotionally draining,” Hall said. “To be able to get out there and run and bring him with me so my wife gets a break and Thaddeus gets a break, too, from just being inside all day.”
Thad’s mind, as far as his parents and doctors can tell, functions as well as any boy his age, Hall said. Though Thad can’t communicate with words, he is always present and observing, the father said. His son’s eyes constantly scan the world around him from whatever vantage point his wheelchair provides.
“It means the world to walk in the door and his eyes move toward you when he hears your voice,” Hall said. “He’ll try to pick up his head and look at you. That’s fantastic.”
What Thad conveys through nuanced expressions confirms an array of emotions and moods that anyone feels, Hall said.
“Thaddeus loves being around kids,” he said. “If kids are around and they’re having a great time, he just looks happy being in the same room.”
“Thaddeus loves lights, so if we go somewhere he will just stare at lights,” he continued. “We have Christmas lights in our house year-round.”
Through the challenges and hassles of Thad’s medical condition, Hall remains a steadfastly grateful and proud father.
“Obviously, he’s my boy,” he said, straightening up slightly at the opportunity to describe his son.
Thad is a “pretty chill kid,” Hall said. The boy really enjoys being around people. He loves his family. He just rolls with whatever they’re doing.
“It doesn’t matter if he’s in a hospital hooked up to IVs and monitors and he’s sick,” Hall said. “He’s so peaceful.”
In this way, his little boy with the roving gaze, Hall said, is as much a teacher as a joy to behold.
“I can look at my life and go like, ‘Wow, it’s hard because of X, Y and Z.’ Thaddeus doesn’t have the ability to do a lot of things that I enjoy,” Hall said reflectively. “He may never. And yet he can find contentment. I guess that’s the word I’m going for, contentment.”
“It’s so refreshing in our culture, which is so fast-paced — a lot of image management, a lot of going on to the next and the next and the next,” Hall continued. “Thad is just happy to be right here.”
THE ROAD TO JEFFERSON COUNTY
Sporting a summer-styled military crew cut topped with a slight mohawk bouffant, Hall is soft-spoken but as wide-eyed and sharply observant as his little boy.
Hall grew up on the central-coast of California, and his wife grew up mostly in Akron, Ohio. The couple met at Patrick Henry College in Purcellville, Virginia, in neighboring Loudoun County, where they also attended the same church. They got married a year after they both graduated college. They first settled down in Leesburg before moving to Jefferson County and Harpers Ferry to acquire a single-level home that would accommodate the full use of Thad’s wheelchair.
“We just knew we wouldn’t be able to pick him up and walk down stairs easily,” Hall said.
His wife Rebekah is a full-time homemaker — “working evenings, weekends and days” — for Hall, Thad and the couple’s healthy and active 8-year-old daughter Magnolia. Hall works as a computer systems administrator for a nonprofit, Care Net, a Christian-based pregnancy counseling organization in Landsdowne, Virginia. He can telecommute from home several days a week, which allows him to help tend to Thad more often than if he had to commute to an office every day.
“I can take care of him, or help my wife take care of him,” Hall said. “We tag team.”
Hall says his family found more than a home, but a generous welcome in Jefferson County. Everyone has been friendly, helpful and encouraging, from neighbors to a coterie of local runners.
“The school system has been fantastic to work with Thad in the home,” he said.
Connecting with the nonprofit organization Horses with Hearts in Martinsburg, which offers a physical and emotional therapeutic horse riding program for disabled people, veterans and seniors, has been a marvelous opportunity for Thad and Hall’s family.
People in the county just don’t say they want to help, they really want to and they do, Hall said.
“We didn’t expect it to be this good,” he said of his family’s landing in Jefferson County. “This is the most it’s felt like home just because people seem to slow down and care about each other.”
Extending a “big thank you,” Hall also said he appreciates the support he has received, including a fundraiser from the Harpers Ferry community and significant discounts on running shoes he received from Harpers Ferry Outfitters in Harpers Ferry and Two Rivers Treads in Ranson.
Hall said he appreciates working for an organization that is so understanding and helpful.
“They’ve been a big part of our story as well with their support,” he said of his workplace. “Coworkers always love to hear about our running. My supervisor has been very flexible and really understanding.”
Hall and his family worship at a Christian church in Frederick, Maryland, a community he also credits with providing his family with an outpouring of support. His faith has given him patience, he said, to each day face the time-consuming challenges of Thad’s medical condition and the profound questions that come with them.
“You know my hope is not that doctors will find a cure. I would love that, absolutely,” Hall said. “But my hope is that one day Thaddeus is going to run around. It could be here and we get to see it, maybe not. But there’s a much bigger story than the day to day.”
A tattoo on Hall’s forearm shows an image of a wheelchair and a running figure. It includes the words “Morn Shall Tearless Be” from a favorite hymn.
“One day it’s going to make sense,” he explained the inscription.
“The Bible talks about every tear being wiped away,” he reflected. “And to me that means even if I don’t have all the answers, one day I will be able to say, ‘That makes sense.’ There’s a perspective here that I don’t have. I’m like a little kid asking his dad for something, and his dad is like, ‘You know what, you just don’t understand, but I do and it’s going to work out.'”
THE PATH TO ROAD RACES
As a senior in high school, Hall’s first experience running was during two-mile warm ups while playing on his school’s soccer team. He enjoyed “slow and steady” longer-distance running as much or more than soccer, discovering a particular kind of fitness and clarity of mind through running. Occasionally, Hall ran three to five miles casually while in college and after college.
Push teams are starting to appear in footraces across the country, but still many running events don’t recognize or understand these teams enough to include them, Hall said. Fortunately, he said, the Freedom’s Run marathon and half marathon that take place in Jefferson County each spring and autumn allow him and Thad to participate. In fact, the race organizers, led by Jefferson County family physician Mark Cucuzzella, encouraged them on, giving the father-son team their first opportunity to run in a long-competition last spring.
However, Hall’s first introduction to push-team running came through the story he discovered before he had his son and daughter. The story is about a father-son push team from the Boston area.
“Team Hoyt,” involved Dick Hoyt, a father who started running races in 1977 with his son, Rick, a quadriplegic with cerebral palsy in a custom-made running chair. Rick, like Thad, could not speak but, unlike Thad, he could communicate through an interactive speech-enabled computer.
Over the past 40 years, the Hoyts competed in more than 1,000 races together, including marathon footraces as well as grueling triathlons that combine long-distance running, bicycling and swimming challenges into a single race. The Hoyts, who more famously biked and ran the 3,735 miles across the country in 1992, still occasionally compete in marathons today.
“I just thought that is fantastic,” Hall said recalling the first time he learned about the Hoyts through a YouTube video while he was in college. “I loved it.”
But just as inspiring for Hall, beyond how the Hoyts competed in so many races for so many years, was the first five-mile footrace the Hoyts entered together.
“Came in second to last,” Hall recalled. “He was not in great shape, but afterwards his son said, ‘When we run together I don’t feel disabled.’ And that was just a huge light bulb that went off for (Dick Hoyt) that he needed to do this-big time.”
Years later, Hall’s memory of the Hoyts — and what they accomplished with no athletic experience or training — would flash in his head after Thad was born.
In remembering the Hoyts, Hall, who at the time had only walked and jogged informally with Thad at first, never expected or even wanted to become part of an athletic dynamo performing inspirational feats. But in the back of his mind he thought he could draw on their example to start an adventure with Thad. With steady effort one simple step at a time, he could see what happens, he said. The possibility was what mattered, and that idea lingered.
But other people and events would help steer and encourage Hall and Thad toward push-team marathon running.
One day unexpectedly Hall’s mother mentioned the idea of running a marathon with Thad. She saw how Hall enjoyed walking and jogging with Thad. But the idea of marathon running was “crazy” to Hall — too extreme.
“Three to five miles and I’m done,” he said of his running ability and perspective at the time. “So there’s no way, and I’ve never pushed Thad.”
Later on, for his fifth birthday, Thad received some cash, however. And Hall found himself researching another jogging stroller purchase for his growing son. The stroller he eventually purchased has three wheels, safety straps and room for Thad to grow.
Then last year one spring morning Hall attended the opening reception for the Guide Shack Cafe, an eclectic coffee bistro, eatery and informal hang out place in Harpers Ferry, just down the street from Hall’s home. There he first met and talked with Chris Price, the cafe’s owner, and the two men became fast friends.
An intense Air Force military veteran, Price learned about Thad, and Hall learned about Price’s nephew with cerebral palsy who uses a wheelchair like Thad does.
“He looked me dead in the eye and said, ‘Jake, we need to push these boys through a marathon,'” Hall said of the conversation with Price. “That’s just the way Chris is, right. He’s going to take it all the way.”
Soon after, Hall started researching marathon races and making phone calls to them. He found little awareness or flexibility for push-team runners from the various races he contacted. Some marathon races have rules against running strollers fearing possible liability if another runner were to trip or stumble over a stroller. The terms buried in insurance policies for marathons can also essentially block bar push teams from participating in many events.
By last May, Hall still could not find a race to run in as a push team with Thad. He mentioned this to Price, who knew that the Freedom’s Run half marathon race was the next day, and that he knew Cucuzzella, another Air Force veteran.
At the time, the longest stretch Hall had run alone was about eight miles, nothing close to the 13 miles of a half marathon. He had never run more than two miles while pushing Thad. But by then the short runs Thad experienced with his father were transforming for the child.
“He loved it,” Hall said of his son. “He loved being outside.”
Explaining his situation to the Freedom’s Run coordinators, Hall received immediate approval to participate in the half marathon. Moreover, the race coordinators gave him a free registration. Don’t worry about anything, we support what you’re doing, go for it, Hall was told.
“Here’s your tags. Here’s your T-shirts,” he remembers hearing. “Just show up and run.”
Price went along during that first half marathon and helped Hall with stairs and other obstacles a push team would encounter along the race route. He said he “crumpled” in pain with cramps during the race a few times. “But it was fantastic,” he said.
“We ran two and a half hours — not a single seizure” shook Thad, Hall recalled. “He just loved it. He looked happy. People were cheering. It was a beautiful day. We had a fantastic time.”
The father-son team also completed all 13 miles of the race, their first half marathon. And since then they have completed a full marathon and a half marathon, with hopes of finishing the Freedom’s Run marathon this fall.
LET OTHERS RUN
Asked to share any of his perspective for people who also have a child with a disability, Hall said try running perhaps or try something else that feels bold and even out of reach.
“Give it a try,” he said.
Those families would probably be amazed at the number of new friends who suddenly show up in their lives, Hall said, who are eager to help — perhaps offering a gift of their time, their knowledge or their donation — any way they can.
“I’m not some all-star runner who just had a disabled kid and ran with him,” he pointed out. “Running this far is new, with the last year and a half.”
His push team running started with a goal, suggested by others, and it came about only a step at a time.
Hall would like to form a local running club for push-team runners. He already runs casually with a few friends on Saturday mornings. They meet up at the Guide Shack Cafe.
For people without a child with a disability, Hall just offered a thank you. So many people who have encountered him running with Thad have offered simple, spare words of encouragement that mean so much, he said.
Usually in races but elsewhere, too, people have mentioned how Thad looks so happy when they’re running together. Others have shared a similar love for a family member or friend with a disability, too. Some have simply called Hall an awesome dad.
“Those little comments — they mean the world to us,” Hall said, speaking for himself and his son. Of course, he doesn’t think he’s the best dad in the world, he added. But a little bit of encouragement has often been the most memorable part of more than a few challenging days.
“I’ve never felt when I’m at these races or running around town that I’m in the way,” he said. “People have never treated us like we’re somehow an obstacle to their progress or their race time. They’re always just encouraging. That’s fantastic.”
More and more, when he and Thad complete any run, whether it involves training or a formal race, Hall said he appreciates each experience as a gift to be thankful for and delight in. Sometimes the run goes smoothly. Or sometimes Thad might be having seizures and he’s uncomfortable. But every day is still a gift.
With four major races under his belt so far, Hall’s long-term goal is simply to keep running local races with Thad as long as possible.
“I would like to be able to do the Freedom’s Run marathon every year until I’m an old dude,” he said. “I think that would just be so cool.”
Once again Hall thinks about Dick Hoyt, who continued pushing his son in Boston marathons until he was 72.
“So if we go that long,” he said with a laugh, “I’ve got 40 years.”
Information from: The Journal, http://journal-news.net/