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Tuesday, April 23, 2013

Everyday Heroes: Inspiring father-son partnership helps son ‘roll’ past disabilities

Patrick John Hughes (Photo provided)


Editor’s note: This story about the father-son duo Patrick John Hughes and Patrick Henry Hughes is taken from Steve Flairty’s 2008 book, Kentucky’s Everyday Heroes. Patrick, born with a rare genetic disorder that left him blind and unable to walk, went on to excel as a musician, student and, with his father’s help, a five-year member of the University of Louisville marching band. Patrick now travels the country as a public speaker.

Patrick John Hughes had high aspirations for his first and newborn son, Patrick Henry. He couldn’t wait to watch young Patrick show grit, to be a true gentleman. Dad even hoped that his boy might grow to be a successful and popular musician, or possibly a sports star featured on ESPN.

Two decades later, Dad’s dreams were realized in grand style and with overflowing acclimation – but not, in any way, like he had first imagined. Patrick Henry and Patrick John Hughes were the subjects of national TV and news coverage for the inspiring story of being a part, together, of the University of Louisville’s marching band, with Dad proudly pushing his wheelchair-bound, blind student son around the football field as Patrick played the trumpet.

Continually, Patrick repeated to the media some version of “Big deal, I‘m blind, but God gave me the ability to play the trumpet and the piano.” He modeled, by attitude and actions, that a person who can’t see or walk can, nevertheless, play beautiful music, can make high grades in class, and perhaps most importantly, can be a well-adjusted and happy individual who can move people to rise above their own challenges.

Patrick became the first ever non-athlete to win the Disney Wide World of Sports Spirit Award, announced on ESPN at the Orange Bowl. He was profiled in People magazine, USA Today, Sports Illustrated and numerous other print media. He was featured on Good Morning America and on the Oprah Winfrey Show. He began getting invitations to speak and display his accomplished music skills. He appeared on numerous radio talk shows.

Patrick, with typical clear and articulate speech, downplayed all the attention. “I don’t care about all that attention I’m getting,” he said. “It’s just that it’s fun and I enjoy meeting new people. God has just given me the ability to use my music to inspire others.”

What brought the two to such unexpected national acclaim was a long and circuitous path that started in 1987, when Patrick was born.

Patrick’s arrival into the world brought disappointment for both parents after he was diagnosed with a rare genetic disorder that left him, literally, with no eyes and the added burden of an inability to straighten his arms and legs.

“We had played by all the rules. Patricia had a good pregnancy. There was no drugs or alcohol or anything. We wondered why it happened to us,” Dad explained.

After a short time of “feeling sorry for ourselves,” the couple began dealing with how they best could help their son. The father saw something “special” about Patrick in the first few months of infancy, while he was doing what babies do—namely, screaming.

“I laid him on the piano and played notes to him,” said the elder Hughes, “and, like a switch, Patrick got quiet immediately.” By the time the child was 9 months old, he sat at the piano in a high chair, not “banging” the keys with his thick fingers, but noticeably reacting to the differences in the key sounds as he touched them.

“I could see the wheels turning as he would hit a note,” said Hughes, “and then he’d, by trial and error, play them back to me as I’d call them out.” By age 2, Patrick was playing requests, such as You are My Sunshine and Twinkle, Twinkle Little Star. He was becoming the darling of Patrick John and Patricia Hughes, as well as others who knew the family.

With what the elder Hughes called “phenomenal” support from the Jefferson County Public Schools, Patrick was successfully mainstreamed into regular classes from kindergarten through high school. He received Braille system training early, and it became an integral part of his learning. His grades were consistently nearly all A’s, and in Atherton High School, Patrick made the Kentucky all-state teams in both chorus and band.

Patrick grins when he tells how his music teachers used him as a model to motivate other students. “The teachers would say ‘Patrick is memorizing his music, so if he can do it, you can do it’”

Dad cited the numerous teachers who helped his son with daily adaptations in the classroom as a large part of his success. With more than a hint of fatherly pride, Dad remarked that “the special needs teachers were always fighting to get Patrick in their classes because of his attitude and work habits. He was a good student.”

In the summer of 2006, Patrick enrolled as a freshman in the University of Louisville. He would take full advantage of UofL’s resources for helping students with disabilities to succeed, but his father would play a huge role, too. Dad would work at UPS at nights in order to wheel his son around campus every school day and assist him in the classroom. Long nights, short mornings of rest and long days supporting a very appreciative son.

Not surprisingly, Patrick had a strong desire to play his trumpet in the Louisville pep band at basketball games. There was a problem, however. A school rule stated that, in order to be a member of the pep band, a student was also required to be a part of the marching band – apparently not a possibility for the wheelchair-bound freshman.

A door opened, however, for what Patrick always ever needed anyway – a simple opportunity to shine. In a remarkable gesture of creativity and generosity, the marching band director, Greg Byrne, made a surprising proposal to Patrick: “How about joining the marching band?” And not just sit on the sideline playing, as he did in high school, but in formation, moving along with the other marchers. He, then, would be in compliance with the school rule and could later play in the pep band at basketball games.

Successful participation in the marching band would simply be a matter of logistics, and Dad was the key. He would be the power behind Patrick’s wheelchair. Dad would have to learn – and practice – the formation and drills like all the other band members. The challenge would be enormous, but both Patrick and his father were game to the idea.

It started in band summer camp, with 12- our days. There was heat, a heavy wheelchair and his 165-pound son aboard. There were stops, starts, and plenty of do overs.

Sometimes there were collisions, too.

But it worked, and the summer camp experience prepared them for the season to start, with three practices a week plus a game, usually on Saturday. It would also make Dad‘s already tough days with Patrick in the college classroom seem a little easier, but still challenging.

“The first two weeks of class were brutal,” said Dad. “Placing special orders for text books on CDs, for example, and having to wait for them to arrive.” In the meantime, Dad read Patrick’s text assignments to him until the materials came. In a 24-hour world, this father needed about twice that many.

“There wasn‘t much time to sleep, but it’s what a father is supposed to do. I didn’t have much time to pity myself,” said Dad. “I was blessed when I thought about being better off than ninety per cent of the world‘s population.”

As the marching performance season got going, along with Louisville’s highly successful football Cardinals, attention for the inspiring story of the Hughes’ twosome came quickly. It made people feel good, and it made people think about rich possibilities in their own lives – and it was noticed throughout the world.

“Even today, we get emails every day from all around the country, even other countries like Indonesia and South Africa, telling us what this has meant to them,” said Dad. “We see that there is a reason for all that has happened to us. We were only occasionally churchgoers, though believers, when Patricia and I got married, but when Patrick came along it changed all that.”

Patrick, himself, has accepted the faith of his parents. “Oh, yeah. Our faith is very important to us. We go to church every chance we get, including when we’re out of town we find a church to attend,” he said. “I am also using Rick Warren’s program of reading through the Bible in a year.” Then he smiled broadly as he noted, “I always say grace, even when I just take a drink of water.”

Along with Patrick’s sophomore year school and band activities, the invitations to speak and play music at churches, conferences and other venues are keeping the family busy – almost too busy. “We do the best we can, because we really like to travel, but it’s getting a bit hard to handle all of them,” said Dad. The Hughes family includes two other boys, Cameron and Jesse.

Said Dad, “I am very proud of them, too. They do well in school and with their activities. And, they seem to handle Patrick‘s acclaim very well. I want to support them, also.”

The father, Patrick John, and son, Patrick Henry, have learned from each other some valuable life lessons.

“Dad taught me that it doesn’t matter what kind of disability you have, you can’t expect to get sympathy. He let me know that if you set your mind to something, you can do it,” said Patrick.

“Patrick has taught me to never say never in whatever happens,” Dad said.

Looking into the future, after the last marching band performance on wheels takes place and the last class in college is taken, can we expect these two models of the best in human spirit to continue their close working relationship?

“That depends on Patrick,” said Dad. “He’ll be getting older and probably more independent.”

“But if he needs me, I’ll be there.”

Steve Flairty is a lifelong Kentuckian, teacher, public speaker and author of four books: a biography of Kentucky Afield host Tim Farmer and three in the Kentucky’s Everyday Heroes series. All of Steve’s books are available around the state or from the author. Steve is a senior correspondent for Kentucky Monthly as well as being a weekly KyForward contributor. Watch his KyForward columns for excerpts from all his books. His most recent book, Kentucky’s Everyday Heroes for Kids is now available at local bookstores, and Kentucky’s Everyday Heroes #3, Steve’s fifth book, will be released in early 2013. Contact him at sflairty2001@yahoo.com or “friend” him on Facebook. (Steve’s photo by Ernie Stamper)



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