by Bert Williams

Patrick John Hughes was a typical 26-year-old dad-to-be. He had seen the ultrasound pictures, and he knew the baby he and his wife were expecting was a boy.

Now, some 20 years later, Hughes looks back at those weeks leading up to the birth and remembers the dreams he had for his son. One dream was that the baby boy would grow up to attend a major university and be a star on its football field. But when the baby arrived, the bubble of that dream burst.

 “My wife had a picture-perfect pregnancy,” Hughes remembers, “so in the delivery room we kept expecting to hear the doctor say, ‘You’re the proud parents of a healthy baby boy.’ But those words never came.”

 The new baby, whom they named Patrick Henry, had been born with bilateral anophthalmia, a condition found in about one in every 100,000 births. Patrick Henry Hughes had been born without eyes.

He also had ptergyium syndrome, another rare condition, which did not allow him to fully extend his arms and legs. He had congenital bilateral hip dysplasia, a condition in which the hip sockets are not fully formed, and he had scoliosis, causing his spine to be malformed.

“Countless dreams died that day,” says Hughes. “My wife and I were devastated. We asked, ‘Why us?’ We had played by all the rules. We had worked hard. We had gone to church. We just didn’t understand. For several weeks we were angry and bitter.”

But they took stock of their situation. “Okay, this is what we’ve been dealt,” he remembers thinking. “Are we going to continue to wallow in a pool of pity, or are we going to give Patrick the life we intended for our first-born son?”

The troubling question was: how could they possibly create such a life for this son?

First Glimmers

At first, as they looked at Patrick Henry in his crib, Patrick John and Patricia Hughes wondered if a baby who looked like this could possibly have any kind of a functional brain. The doctors were guarded with their answers. Time would tell, they said.

“But he did all the things that a happy baby does,” Patrick John remembers. “He ate well; he slept well. And he started to show some personality. He interacted with us!”

 When Patrick Henry was nine months old, Patrick John sat at the piano with his son on his lap. Since Patrick Henry couldn’t see, his dad wanted to offer him as many other sensory experiences as possible.

 Dad played three notes on the piano—one high, one low, one in between. To his surprise, his son felt for the keys, and played a high note, a low note, and one in between. Patrick Henry could hear different pitches, and he could understand them!

Patrick John then struck the same key four times in succession. Patrick Henry reached out and struck a note—four times in succession. Patrick John suddenly realized that his son could count!

“And his personality started to shine,” Patrick John recalls. “Before long we were asking ‘Why us?’ but with a different meaning. Why were we so fortunate? We realized we needed to be grateful for all the things Patrick could do, and not focus on what he couldn’t do.”

At the age of two, Patrick Henry was playing tunes on the piano after hearing them only once. He began taking requests.

“I had realized my son wasn’t going to play baseball with me, or football or basketball,” says his dad, “but hey, we were going to play music together.”

School

Because Patrick Henry could not see or walk, the public school district in which he was enrolled assigned a teaching assistant to help him, but it soon became apparent that he would need no academic assistance; he was a far-above-average student. Mainstreamed into a classroom of children with no obvious disabilities, Patrick Henry excelled.

The classroom experience was an unusual one, based on a “Spanish immersion” curriculum (his first grade teacher was born in Chile). Patrick Henry inhaled the second language as freely as air.

He learned to play several musical instruments, and as time went on the list of instruments he played stretched longer and longer. Soon he was playing his own piano arrangements of old standards.

Patrick Henry’s first significant public performance came when he was nine years old. It was a fund-raising telethon on a local TV station, and country music singer Bryan White was the guest artist. White already knew something about Patrick Henry, so when he took the stage he invited Patrick Henry to join him in singing “From this Moment On,” the song White had recorded with country music mega star Shania Twain.

At first White sang his own part and also doubled Shania’s part, perhaps expecting that Patrick Henry would do little more than lip sync the words. However, the little kid in a wheel chair began belting out Shania’s part confidently. After a few phrases, White signaled the sound guy to turn up Patrick Henry’s mic, and they sang the rest of the song as a full-fledged duet—little Patrick Henry carrying Shania’s part alone without a hitch.

In high school Patrick Henry played in the band and sang in the choir, developing a fine tenor voice and considerable skill on the trumpet. He studied classical music on the piano, and blues piano became a passion. Continuing his study of Spanish, he had the opportunity to visit Spain to refine his language skills.

A Football Field After All

Having received nearly all A’s throughout elementary school and high school, Patrick Henry easily gained admission to the University of Louisville, near his home in Kentucky. He chose Spanish as his major.

Patrick Henry and his father approached the university’s Associate Director of Bands Dr. Greg Byrne about Patrick Henry playing trumpet in the university’s basketball pep band. Byrne said that would be fine, but that Patrick Henry should also plan to play in the marching band at football games. At first both father and son thought the idea was crazy. Then, when they discovered Byrne was serious—and insistent—they considered appealing to the university president to avoid participating in the marching band. It seemed obvious that an appeal would be successful. After all—the marching band?

But Patrick John never got around to writing the letter to the president, and soon they were again sitting in Byrne’s office listening to his plan: Patrick Henry would learn the music and play trumpet; Patrick John would learn the marching formations and push the wheelchair. Crazy as it sounded, they agreed.

The decision had wider ramifications than any of them dreamed. The two Hughes men have subsequently been featured on ABC’s “Good Morning America,” the ESPN sports network, Sports Illustrated magazine, Oprah, Ellen, and People magazine. In 2006, Patrick Henry was the winner of the Disney Wide World of Sports Spirit Award, an honor usually given to a notable college athlete.

In November 2007 the family was featured on the ABC TV show “Extreme Makeover—Home Edition.” They now have a new home designed to meet Patrick Henry’s unique physical needs, courtesy of the TV program.

Contrasting Experiences in Faith

One evening in June of this year, following their presentation at an Evangelical Lutheran convention in Grand Island, Nebraska, I sat down for a conversation with the two Hughes men.

I asked Patrick Henry about his personal faith. “Faith is easy for me,” he replied. “I carry God with me wherever I go.” Earlier, during his presentation to hundreds of listeners in the large hall, he had explained that, in addition to having almost straight A’s in school, he also has straight F’s: faith, family, friends, and freedom.

“God made me blind and unable to walk,” he said. “Big deal! He gave me musical gifts and I have great opportunities to meet new people.”

Patrick Henry explained to me that he believes his strong faith in God grows out of his regular reading of the Bible (he uses both audio and Braille editions). He is presently working on the fourth time reading his way through the entire Bible. When we spoke, he was in the book of Daniel.

The contrast between Patrick Henry’s faith and the faith of Patrick John is fascinating. Patrick Henry has never known a life other than the one he has. It is a good life, in which he has thrived beyond anyone’s expectations. It is not hard to understand why faith comes naturally to him.

But Patrick John has battled fear, doubt, frustration, and—at times—anger at God. I asked him to reflect on his faith experience over the past two decades. He was quiet for several moments, and then spoke carefully:

“As a 26-year-old man being sent this boy with no eyes and these anomalies in his arms and legs and hips and spine, I wouldn’t say I saw no light at the end of the tunnel; it was more like there wasn’t even a tunnel.

“I had a moment at his birth when I considered not giving him the name Patrick Henry, but saving it for my next son because that name meant so much to me (Patrick John and Patricia have had two more sons, who have no disabilities). But God has certainly shown me that, no matter how dark it may seem, He has a plan.

“When Patrick was born, I buried that dream of my son playing on a football field at a major university. But here we are, playing on a football field at a major university. So many dreams I imagined for my son have come true in ways I never could have imagined.

“I’m not an extraordinary individual. I just went to work, loved my son, took him to doctors, worked a third shift at my job, and I never expected any of this fame to come Patrick’s way. I now know that, if you don’t give up and lose yourself in a pity pool, great things can happen.”

Looking Ahead

As Patrick Henry looks to the future, he considers a variety of opportunities. Because he is fluently bilingual he might serve as a Spanish-language interpreter working either for the US government or in private industry. He considers the possibility of some day becoming a US ambassador to a Spanish-speaking country.

Having now entertained hundreds of thousands of people around the country, Patrick Henry also thinks about possible careers in entertainment, or perhaps in motivational speaking. One possibility he has been mulling over lately is an idea for a TV game show—with him as the host!

As Patrick John looks to the future, he can’t help but think of the past—back to his thoughts about the future 20 years ago. Then they were mostly fears. But the fears turned to hope, and the hope became reality. Not one who is quick to dispense advice, he nevertheless has this counsel for those facing difficulty: “I would just say to anybody: Don’t give up. Know there’s a plan, even if you can’t tell what it is or can’t see it.”

They are words spoken by a man who clearly knows by long experience what he’s talking about.

_____________________________

Bert Williams is editor of Connected

For the latest about Patrick Henry Hughes, visit www.patrickhenryhughes.com

 

To hear the editor’s conversation with Patrick John and Patrick Henry Hughes, readers who are legally blind may subscribe to the audio magazine Vantage Point, published by Christian Record Services for the Blind. The conversation appears in the fourth quarter 2008 issue of the magazine. To subscribe, email editor@christianrecord.org.