Excerpt from Chapter 1

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.
—Reinhold Niebuhr

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 known from an early age that I was dealt a hand in life different from the cards others got. That’s okay, because I also learned God would help me play that hand if I was willing to accept what I was missing and be thankful for what I can do. Mom and Dad saw to that.

When I meet folks, they often ask me if I had trouble accepting my disabilities. I’m not sure they believe me when I say no, because they tell me they would be really angry, or sad, or bitter if they couldn’t walk or if they lost their sight. Maybe so, but these days, I can’t even imagine feeling that way.

At first, it’s natural to wish we could change the past. “How wonderful life would be,” we tell ourselves, “if only this or that had happened instead.” But where does that kind of thinking get you? Nowhere, and worse, it keeps you stuck there. I can honestly say I’ve learned that lesson and I do accept my life as it is.

When I think about all I’ve been through, I’m pretty amazed at how well things have gone. Twenty years after the fateful day that I was born, I’m attending college, majoring in Spanish. I sing, play the piano and trumpet, and am a member of my university’s marching band. I’ve been able to travel the world and meet thousands of people doing what I love most—performing music.

I have so much to be thankful for, but it sure wouldn’t have been as great if it weren’t for my family and all the friends I’ve made over the years. And especially my parents, who have loved me and supported me at every turn. Maybe if someone else were my mom and dad and they rejected me or felt sorry for me or for themselves, my life might have turned out differently. But I guess you could say I was blessed with exactly the right ones.