To Granddaddy—I miss you
Blessed are the peacemakers, for they will be called sons of God.
I have seen firsthand the power of Patrick Henry Hughes to transform tens of thousands in an instant. And the beauty of it is, all who were present, including Patrick Henry, were unaware of what was taking place.
I’m a big University of Louisville Cardinals fan, and I always attend the home football games. The first time I witnessed Patrick Henry “marching” with the Louisville band at halftime, I admit I choked up. There he was, sitting in his wheelchair and playing the trumpet while his father expertly guided him through the halftime marching routine, meshing perfectly with the other two-hundred-plus band members as they crisscrossed the field.
The transforming event took place in November 2006, during a football game between the University of Louisville and a major Big East conference rival. Sitting in the visitors’ section across the aisle from me were five thousand rowdy fans, many of them wearing sweatshirts painted with nasty phrases about Louisville. They were throwing ice and debris into our section, not to mention the fighting words laced with obscene gestures coming our way.
During TV timeouts, their group booed whenever the announcer introduced individual Louisville student athletes who were being honored for academic achievement and professors and others cited for outstanding service. At halftime, when the marching band made its way onto the field, these fans booed even louder, drowning out their music.
Their fans seemed determined to push a confrontation. And many on the Louisville side were eager to accommodate them. As the halftime show was winding down, it was announced that Patrick Henry Hughes would perform. There was excitement, then grumbling among the Louisville faithful. The sentiment was strong that if those surly fans booed Patrick Henry and drowned out his performance, there would be war.
You could feel the tension build as we waited.
As Patrick Henry appeared on the giant TV screen in the end zone, the camera zoomed in for a close-up. He struggled briefly with his sunglasses, and I glanced over at the visitors section.
Their fans had no idea who Patrick Henry was or what to expect. All they could see was a young man in a band uniform seated at a keyboard: nothing terribly unusual about that. Yet, something must have told them this was a special moment. Suddenly, all was quiet as he leaned forward, ready to play.
There was a brief hesitation, and then Patrick Henry’s fingers danced across the keyboard and launched into the Ray Charles hit “What’d I Say.”
The moment he began, the entire place erupted. Everyone was clapping and cheering wildly—and to my astonishment, the positive response from the rival fans matched the intensity of Louisville’s. As Patrick Henry performed on the big screen, I watched in wonder as the aggressive, tough guys who were threatening us moments ago now smiled and gave the Louisville fans two thumbs up. Fans on both sides were actually exchanging high-fives across the aisle.
Impending war had morphed seamlessly into loving peace. We all were united, a massive family bonded briefly in our appreciation and respect for this extraordinary young man who had overcome so much. It was truly beyond comprehension to me, but as I would later learn, it was typical in the world of Patrick Henry Hughes.
Everyone in the stadium was touched that night, and for a fleeting moment, one holy instant, we communicated on a deeper level than what we rarely get to visit in our daily lives. Ever so slightly, and perhaps only quite briefly, we were changed.
My first meeting with Patrick Henry Hughes, face to face, was equally and inexplicably powerful. He and his dad, Patrick John Hughes, came to my home for a visit. I write a column for the Louisville Courier-Journal and had devoted my Thanksgiving Day column to that football game. Patrick John and I had been e-mailing back and forth ever since. Patrick Henry wanted to write a book, and we were meeting to discuss my helping him with the project. I had my doubts if I’d have time, mostly because my plate was overflowing with obligations that kept me running night and day.
Over the years, I have come to appreciate that sometimes the most incredible things happen when it appears nothing at all is going on. This was one of those occasions. Dad wheeled Patrick Henry onto my back porch. The young man greeted me, we shook hands, and for some reason, I held his hand longer than is customary. Yet he smiled at me and seemed perfectly comfortable that I was holding on. I know now that touch is so important to him as a primary source of information.
There are those among us who are able to touch us genuinely, to instantly disarm us, and in so doing allow communication soul to soul. Patrick Henry is one of these rare individuals. He is gifted in many ways, but he also possesses an innocence that, even from a distance, reaches out so unconditionally, you are moved to respond in kind. And somehow, this intimate contact with someone you’ve never met before seems like the most natural thing in the world.
When I met Patrick Henry that day, there was a profound sense of familiarity surrounding him. I felt as if I had known him all my life. When I held his hand and heard his voice, I knew something I hadn’t a moment ago. I realized I would learn from him.
Patrick Henry Hughes is unique, and not just because he was born with a basketful of infinitely rare physical disabilities. On the contrary, he’s unique because of his amazing attitude about it. He told me, “I’m blind and I live my life in a wheelchair, so some people might feel that, ‘Gee, what a terrible thing to have to live like that.’ But I don’t see it that way. When I go to bed at night and count my blessings, I have a long list to get through.” Ask him about his disabilities, and he’ll be quick to tell you, “What disabilities? People who are disabled can’t do things. I can do things—whatever I set my mind to. My mom and dad raised me that way.” These are not just words put together in a sound bite to attract attention. They are Patrick Henry’s credo, his philosophy of life.
This book is not only the story of Patrick Henry’s life, but also a guide for those who seek to live their own life to the fullest each day. In getting to know Patrick Henry and the Hughes family, and watching their impact on others, several distinct, core elements emerged to help explain who he is and why he has been able to rise above profound adversity. These elements form the basis for the eight lessons on living with faith and without fear, loving unconditionally, and reaching your dreams—no matter how unattainable they may seem.
Patrick Henry Hughes is truly a blessing to our world and an example of the potential that lives within us all.
A Note from Patrick Henry
Before I get into my story, I need to tell you how it’s organized so you won’t get confused. I will be telling a lot of the story, but you also will be hearing from my dad, Patrick John Hughes. We let you know when the voices change with headings: Patrick Henry or Dad. We’ve used “Dad,” rather than “Patrick John,” because our names are so similar.
When Life Gives You Lemons, Accept Them and Be Grateful
God, give us grace to accept with serenity
the things that cannot be changed,
Courage to change the things which should be changed,
And the Wisdom to distinguish the one from the other.
My name is Patrick Henry Hughes, and I came into this world on March 10, 1988. My birthday should have been the best day ever for my mom and dad, but it turned out to be a pretty rough one. The day after my birthday was even worse.
Dad had gone home to shower and shave, then came back to the hospital and arrived at Mom’s room just as the pediatrician walked in. Mom says the doctor seemed nervous and kept looking down at a chart he was holding tightly with both hands. Then he’d look at me curled up in her arms. When the doctor started talking, his voice broke and he had to stop and clear his throat.
There were problems. The medical team had learned some things about my health, but there was still a lot they didn’t know and they’d need to do more tests.
After what seemed like forever, the doctor told them my condition looked as if it could be dwarfism. “X-rays suggest it might be short-limb dysplasia and a disproportionate truncated structure,” he explained. Dad asked him to speak English.
“The arms and legs are shorter than you would expect by looking at the rest of his body. That’s one problem . . .” He paused and checked his chart again. “And there’s more.” He waited for my parents to give him the go-ahead.
“I’m sorry to be the one to tell you. Your baby has inherited an extremely rare condition. He doesn’t have eyes.”
My mother had thought I was just taking my time before I opened my eyes. When Mom recalls that day, she says the doctor’s words were like being socked in the stomach, because she lost her breath.
The doctor continued, “I regret to say there’s still more you need to know . . . when you’re ready.” And then there was another seemingly interminable pause. When he continued, both Mom and Dad couldn’t believe their ears.
Dad held my mom and me. “It’s not fair!” Mom sobbed. “I did everything I could to make sure our baby would be healthy.” Dad wondered, Why would God do this to us? Thankfully, God gave him the answer a few years later.
On the day I was born, you might say I arrived carrying a bag full of lemons, not the kind of thing my family had in mind. I think they would have preferred oranges; they’re sweeter and have less bite. But life is what it is and you just have to keep going. You can’t change lemons into oranges, no matter how hard you try. But just because you can’t do that doesn’t mean you give up. Mom and Dad taught me you have to hang in there and learn to deal with what happens to you. And once you do, you discover that lemons are pretty cool and you can make something better out of them, like lemon meringue pie. One of my favorites.
My parents were my earliest and best teachers. But before they could teach me about acceptance, they had to learn it themselves. It wasn’t easy, and to hear them tell it, they had to go through a crash course that started with letting go of their hopes and dreams, and especially their dreams for me.
Pretty tough, but you can’t move forward unless you’re willing to accept where you are.
At the moment I was born, Dad didn’t know what to expect. Maybe he didn’t expect anything, because he was so caught up with the emotions. All he knows is the first words he heard were not the predictable, “Congratulations, you are the proud parents of a healthy baby boy!” Instead, at first, nobody said anything, and it got really quiet. Kind of strange, he thought. Then he heard something about “multiple anomalies.” He always likes to joke, so he asked, “What the heck are those?” But at the time, he really didn’t know.
He watched the doctor and nurses off to the side talking among themselves, but he didn’t ask them what was going on, not wanting to appear ignorant or as if he were meddling in their business. After all, he’d seen fingers and toes and all the right stuff he could take in during the brief, hectic moment I came into the world. I was his first child, so he assumed the word “anomaly” must be some generic medical term that applied to newborns.
Dad watched while the nurse wiped me off, wrapped me up in blankets, and gave me to Mom. My eyelids were closed, and my mother thought I looked like all the other newborn babies she’d ever seen. She gets emotional when she talks about back then. “I just loved holding you and wanted to keep us right there, just like we were,” she told me. But after only a minute, the staff told her they needed to get me to the nursery right away. She didn’t like it one bit, but she assumed they knew best and held her tongue, which if you know my mom wasn’t an easy thing for her. Especially when it came to me.
Meanwhile, Dad was more awake and alert, and the more he saw going on, the more he began to question whether the activity was routine. He was told to hurry to the nursery, but when he got there, they made him wait outside. As he waited, he became increasingly concerned about why they separated me from Mom so quickly. Shouldn’t there be some sort of bonding process going on right after birth? And there was a flurry of doctors coming and going, rushing right past him as though he wasn’t standing there. He tried to catch somebody’s eye, hoping one of the staff would stop and tell him something, but they just kept going. With each passing minute, Dad’s fear grew.
Back in the delivery room, Mom was tired. She felt horrible and wonderful at the same time, if that’s possible. She always tells me she wanted a boy to be her first. I know my dad had big dreams about playing baseball with me—he’s a fan of all sports, golf, basketball, and football, but loves baseball the most. My mother just lay there with her eyes closed, picturing us in the backyard: Dad going all out the way he always does, putting down bases to create the perfect field. I’d be catching the ball and tossing it back. I remember hearing about the movie Field of Dreams and thinking Dad was probably like the star, Kevin Costner. He’d build the field and they would come, his and Mom’s first son, then their second and third. Mom shared that dream, too, with a tomboy daughter thrown into the mix somewhere.
Mammaw Betty (my grandma—Mom’s mother) arrived to sit with Mom while Dad went with me. Dad liked to say Mom had a textbook pregnancy. But Mom remembers that day in the hospital when she felt what she calls her “mother’s instincts”—something wasn’t quite right, but she couldn’t put her finger on it exactly.
After resting awhile, Mom called for the nurse, asking for me. When they finally brought me back to her and she held me, everything seemed normal again. She examined me: My eyes were still closed, which seemed natural enough for a baby just a few hours old. Dad returned, and they squeezed each of my fingers and toes. Everything checked out. She started to feel better, and she and Dad were able to have a “family moment.” Later that evening, the nurse who came to take me back to the nursery told my parents they’d get a full report from the pediatrician the next day.
The next morning, the nurse had brought me back to Mom, who noticed that my eyes were still closed. That’s when the doctor walked in to talk with my parents and told them I didn’t have any eyes. And he explained the details about the rest of my problems.
“Your baby’s legs are deformed, and though it’s too early to tell, he may never be able to walk. And his arms . . . they’re deformed, too, and he may not be able to use them the way other people do.”
The doctor wasn’t finished yet and was about to go on, but Mom held up her hand. She didn’t care what the rest was—she needed time to digest what he had told her about my eyes. She stared at my face.
After a few moments, my parents decided they had to know everything, and it might as well be now. “Go ahead,” my dad said quietly.
“The damage to your son could be more than physical, but we won’t know for sure and to what extent for quite a while.” That was too much for Mom. Although she was overwhelmed with all my physical problems, to add mental problems to the list was more than she could bear right then. Dad told the doctor they needed to be alone.
My parents would later learn that I didn’t have mental disabilities, which was the good news. All the rest at the time seemed to be really terrible. Mom didn’t want to blame the doctor, but she decided he didn’t know what he was talking about when he said my problems were permanent. It couldn’t be this bad. God wouldn’t let this happen. Right then, Mom decided that if there was a way to fix my problems, she’d find it, no matter what.
When it was time for Mom to leave the hospital, she couldn’t take me with her. On top of everything, I was jaundiced. The doctors told her jaundice is common in new babies and it probably wasn’t that serious. But I had to be isolated from the other babies, because the doctors were unsure if it could be a sign of hepatitis. They also reported they’d have to call in a specialist to do more blood tests. Just one more thing to worry about.
My parents remember those first days as a slow-motion nightmare. Of course, they wanted information, and the more the better. Most of all, my mom wanted something positive to hold on to, but there was nothing yet. No eyes, arms and legs that didn’t work right, jaundice, and possible mental disabilities. What other shoes were about to drop? Worse, Mom didn’t know what was definite, because it was too early to confirm the diagnoses they’d made. The physicians spoke to her as if they were giving her facts, then they’d say, “Of course, this is all speculation until we run more tests.”
Mom remembers thinking, if my baby has so many problems, will he be strong enough to make it? If not, is it best that a baby with so many problems is freed from suffering? She began wondering about the tests they had done months ago, the ultrasound, because it had given no hint of what I would bring with my birth. What if she and Dad had known about my condition in advance? They don’t believe in abortion, but would they have done anything differently?
There’s no way to answer such a question, but I’ve always known my parents loved me, no matter what. By not knowing what they would face, they had been delivered from making impossible choices. “It’s another example,” Mom said, “of how sometimes the best blessings can be right in front of you, but you don’t see them, because you forget that God is always there, working things out behind the scenes.”
When she was finally able to bring me home after the jaundice thing cleared up, Mom felt better, but she knew she faced a steep mountain ahead. Lots of folks came by to visit and see me, and one of Mom’s friends who knew all about what was going on with me told her, “God never gives you more than you can handle. Trust that, and trust God.” In her heart, Mom knew her friend was right. Another friend told my mother that she had to move on with her life, and to do that, she’d have to first accept what is. “You have to give up your expectations.” Mom didn’t like that one, but she knew it was right, too.
Dad was trying hard to stay strong about everything, but it wasn’t really working. Those earliest days of my life were the hardest of Dad’s. He’s used to dealing with problems head-on and pushing until he solves them or makes them better. In this case, he could do nothing to change my disabilities, and he felt useless.
After nights of exhaustion from worrying about me, Mom suddenly felt at peace. This feeling seemed to come out of nowhere: She knew in her heart that for some reason, she was meant to have a baby like me, with challenges to overcome. We were meant to be a family. She was blessed with what Dad calls fierce determination and would dedicate herself completely to making sure I got everything I needed to not only survive, but also to live a good life, no matter what the odds. She didn’t know how they’d do it yet. The only thing she knew for sure was that before she could move forward, she had to accept what God had given her and trust that someday she’d know why and be thankful for all of it.
I’ve been blessed more than anyone can imagine, and my son, Patrick Henry, is a big part of that. We have attracted a lot of attention lately and get thousands of e-mails. Many of them praise me, and I’m humbled at the thought, especially when I think about who I was before Patrick Henry was born. My wife, Patricia, bore the lion’s share of the burden, dealing with all the obstacles surrounding Patrick Henry’s early years. I feel the need to tell you this right up front, because I don’t want you to think of me as Super Dad, someone who easily and naturally stepped into the role. Later, I’ll give you more details about my transformation and how Patrick Henry teamed up with God to change me in ways I would have thought impossible. But then, that’s the miracle of my son from the very beginning.
I hadn’t really thought a lot about having kids. Until I met Patricia, my life was pretty much about me. Then I fell in love, which tends to expand one’s horizons, and for me, this meant becoming a father. But we fathers, especially on the first go-round, don’t necessarily have an accurate picture of what parenting is about. If I’m typical, we have a tendency to skip right over all the hard parts. My vision of having kids was a flock of sons who loved sports. Ignoring images of the diaper years, teething, potty training, chicken pox, and so forth was easy for me; they never entered my mind. It was as if our first son was just going to march right out and onto the ball field, and we’d live happily ever after. No wonder our wives sometimes get a little put out with us daydreaming dads.
Pregnancy, of course, occupies a family in just about every way you can imagine. At first, it’s exciting, dreaming about your first child, and Patricia took her pregnancy in stride like the trouper she is. But after several months, I know she was getting a little tired of being pregnant—and exasperated with me. My participating in the Lamaze classes was a big deal to her. But it seemed that when we arrived at the class and got comfortable, I just couldn’t stay awake. Try as I might to avoid it, I’d soon be sleeping like our newborn to come. I had an excuse: I was sleep-deprived. I worked late shifts, but to be honest, I was also out doing too much stuff, entertaining myself as much as possible. Patricia accepted the first part, but she didn’t much like the second, and she sure didn’t like my sleeping in class.
I was familiar with what the Lamaze classes were trying to do, yet I had trouble accepting that I always had to be there. A small piece of the class was directed toward me, the dad—information on how I could be encouraging and supportive during labor, as if I weren’t going to do this automatically. The rest was important, too, I knew, but what did it have to do with me? One class had to do with complications that could arise during labor and birth, and the kinds of medical interventions that might be needed. It was stuff I didn’t want to hear and didn’t see as relevant. Everything would be fine. It always was.
Finally, the time was near, and we started for the hospital. I wasn’t like those husbands who panic and run out the front door with a suitcase, driving off and forgetting their wives. I was calm, if not a little distracted. Patricia likes to remind me of a little scene that points out pretty accurately how self-absorbed I was. And she’s right. There we were, about to have a baby, but what was foremost on my mind? Sports. I like listening to sports talk radio, and since it was March, I was tuned in to anything that had to do with the NCAA basketball tournament. So, I kept my ear on the radio, even as I drove my laboring wife to the hospital.
I was lost in my own thoughts until we rounded the bend and came face-to-face with the hospital. I think that’s the first time it hit me. I was going to be a dad! I was excited, though I tried not to show it. Be cool was my motto.
On the way into the hospital, I was supremely confident of the outcome; there was no reason to think otherwise. Patricia had done everything right. No smoking, no drinking. She ate the right foods and gained just the right amount of weight. Excellent prenatal care. And we had evidence. The midterm ultrasound showed nothing unusual. Now, in the hospital, they examined Patricia and decided this was the real thing. Our son was on his way!
I was determined to be the pillar of support for my wife. I studied everything in the labor room, all the gadgets she was hooked up to. The one that caught my eye was a machine that measures the frequency and intensity of contractions—not only predicting that a contraction is coming, but also measuring its strength. Sort of like a seismograph, which measures earthquake activity and converts it to conform to the Richter scale. I figured this would be helpful for me to tell her, but I quickly stopped these pronouncements when she made it clear that if I told her another big contraction was coming, she’d get out of bed and strangle me. It wasn’t time for my cheerleading yet.
Patricia had wanted to have natural childbirth. As the birthing process continued, I think we both underestimated the amount of pain involved. I, of course, still have no idea, but judging from Patricia’s face back then, I knew the pain was pretty steep. The doctor gave her an epidural, which gave her little relief. Now it was too late for any other interventions, and we headed for the delivery room.