Chicken Soup for the Soul: Children with Special Needs Page 13

  4

  BREAKING

  BARRIERS

  There is no chance, no destiny, no fate that

  can circumvent or hinder or control the

  firm resolve of a determined soul.

  Ella Wheeler Wilcox

  Music to My Ears

  God is the answer. What is the question?

  Jay Robb

  Duringmy pregnancy there had been no sign of anything wrong with the baby. I took my vitamins, ate lots of fruits and vegetables, and did my stretching exercises. I expected everything would go as smoothly as they had when my first son was born: an easy delivery and a “perfect” child.

  In the delivery room, squeezing my husband’s hand and hearing our baby’s first cry, I was not prepared for what followed. The look on the nurse’s face expressed her alarm as clearly as her words: “Mrs. Gardner, something’s wrong here!” I looked in horror as she pulled back the blanket to show our son’s face: one eye sealed shut; the other a milky mass; no bridge to his nose, and a face that looked crushed. Although I knew I should take him in my arms, I couldn’t. I just couldn’t. He was whisked away by the nurse as I was wheeled to the recovery room.

  I lay on the hard hospital bed, the tightly pulled curtain shutting out the world. Still, I could hear other new mothers cooing to their babies. I heard one bemoan, “Not another boy!” and I was filled with jealous rage.

  I thought of all the dreams I’d had for this child, of cuddling with him, of reading to him from brightly colored picture books, of his singing or painting or playing the piano like his older brother Jamaal—of his eyes, like Jamaal’s, studying the keys.

  Instead, my baby was blind and painful to look at.

  Slowly, deliberately I walked to the phone and dialed my mom. My agony poured out between sobs: “It’s a boy. His eyes won’t open. His face is deformed. Mom, what am I going to do?”

  “You will bring him home. You will bring him home and nurture him,” she replied simply, firmly.

  A nurse appeared at my side, led me to a rocker, and placed a small, blanketed bundle in my arms. Taking a deep breath, I looked down at my son. I had hoped he would look different—but he didn’t. His forehead protruded. Under the sealed eyelid, an eyeball was missing, the other was spaced far from it. His bridgeless nose was bent to the side of his face. The doctors called it hypertelorism. I didn’t know what to call it.

  As we rocked, my mom’s words echoed in my ears. I began to talk to him. “Hello, Jermaine,” I said. “That’s your name. I am your mommy, and I love you. I’m sorry I waited so long to come to you and to hold you. Please forgive me. You have a big brother and a wonderful father who also love you. I promise to work hard to make your life the best it can be. Your grandpa has a lovely voice, and can play the piano and sing. I can give you music.” Yes, I thought, that I can do. That I will do!

  Over the next few months, my husband and I poured our energies into filling up the darkness in Jermaine’s life. One of us carried him in his Snugli or backpack at all times, constantly talking or singing to him. We inundated himwithmusic—mostly classical, some Lionel Richie, some Stevie Wonder. His four-year-old brother was already taking piano lessons, and whenever he practiced, I sat next to him on the piano bench with his little brother on my lap. After a while, I began strapping Jermaine into his high chair next to Jamaal when Jamaal practiced.

  However, I seldom took Jermaine out of the house because I couldn’t stand anyone staring at my baby. Since blind infants cannot mimic a smile they cannot see, they often do not smile. It hurt that I got no smiles from Jermaine.

  Every day my younger sister, Keetie, called, reminding me that God had a plan for each of us.

  One day, Jamaal was practicing the piano, playing “Lightly Row” again and again, his little brother secure in his high chair next to him. Jamaal had just finished practicing and had come downstairs where my husband and I were sitting, when we heard a familiar plink plunk-plunk, plink plunk-plunk floating down the stairs. I looked at my husband, and he looked at me. It couldn’t be Jamaal. He was jumping up and down on our bed. We stared at each other for a second, then tore upstairs!

  At the piano, head thrown back, a first-ever smile splitting his face, Jermaine was playing “Lightly Row”! The right keys, the right rhythm, the right everything!

  In response to my husband’s immediate and astonished, amazing-news phone calls, the house filled with family and friends within an hour. I sat Jermaine at the piano in his high chair, as we all stood around expectantly.

  Nothing.

  I hummed “Lightly Row” and played a few notes. Jermaine sat silent, his hands motionless.

  “It was just a fluke,” my husband said.

  “No,” I replied unabashed. “It couldn’t have been.” I was certain our eight-and-a-half-month-old son had perfectly replicated a tune.

  Two weeks later, he did it again, this time playing another piece his older brother had practiced. I ran to the piano and listened as the notes became firmer and the tune melded into its correct form.

  From then on, there was no stopping Jermaine. He demanded to be at the piano from morning until bedtime. I often fed him at the piano, wiping strained applesauce off the keys. At first, he only played Jamaal’s practice songs . . . and then he played Lionel Richie’s “Hello” after hearing it on the tape recorder. At eighteen months, he played the left-hand part of Beethoven’s “Moonlight Sonata” while my sister played the right-hand part. When he gave his first concert, I crawled under the piano to work the foot pedals his little legs could not possibly reach.

  By the time he was out of diapers, I was desperate to find him a good piano teacher. I sought out a teacher at the Maryland School for the Blind and called, explaining that Jermaine was already playing the piano.

  “How old is he?” the teacher asked.

  “Two and a half,” I replied.

  “A child that age is too young to start piano lessons,” he said disapprovingly, just as strains of “Moonlight Sonata” filtered in from the other room.

  “By the way, Mrs. Gardner, who is that playing in the background?”

  “That’s the two-and-a-half-year-old.”

  “Bring him in!” the teacher replied promptly.

  Soon, invitations for Jermaine to perform poured in. He appeared on national television. He played at the White House for two first ladies. Stevie Wonder invited him to play with him at his studio in California. A pair of Texas philanthropists who saw Jermaine on TV flew him to Dallas for a special surgery to rebuild his face.

  As I reflect on his accomplishments, I think of my sister Keetie’s words when I had despaired: “God has a plan for all of us,” she’d said, and “God has a plan for your son.” Indeed, I believe He did.

  Jacqui Kess-Gardner

  Jacqui Kess-Gardner is a nurse, author, motivational speaker, hair stylist, makeup artist, aerobics instructor, producer, and teacher. She has authored four books and has a passion for the elderly. Jacqui married her high-school sweetheart, James Gardner, thirty years ago, and the couple has two sons. Jacqui reports that after Jermaine played his audition piece “with the intensity of an adult but with the playfulness of a child,” he was accepted to and attended Baltimore School for the Arts. He next attended Oberlin Conservatory of Music, from which he graduated in May 2006. Jermaine chose Oberlin because of the distance, and he wanted to be away from the doting eye of his mother, Jacqui. She was delighted with his choice and soon got used to the idea of him being independent. He has, since then, added four CDs to his credit and another is in progress. Jermaine states that he would like to start a music school for the blind. Jacqui can be reached by e-mail at jwriterG@aol.com.

  Jermaine Gardner pictured with Stevie Wonder at

  Wonderland Studios.

  Reprinted by permission of Jacqui Kess-Gardner.

  I Am

  I am not retarded.

  I wonder how I got to be viewed that way.

  I hear that dreaded word and sh
udder.

  I see everything without quite looking.

  I want trusting friends who don’t utter that word.

  I am not retarded. I am Dillon.

  I pretend I don’t hear it, but

  I feel every nasty letter.

  I touch the hearts and minds of all I meet, yet

  I worry what they think.

  I cry inside because

  I am not retarded.

  I understand everything, I understand it all.

  I say what’s on my mind, and people nod and smile.

  I dream of true acceptance.

  I try my very best.

  I hope that people truly see

  I am not retarded. I am simply me.

  Dillon York

  Dillon York wrote this poem as a school assignment when he was thirteen. He is now sixteen. He has autism and cannot speak. He uses adaptive communication technology to expose his thoughts. Without this technology, he could not write, and would remain silent. He is an advocate for greater understanding of autism, and for communication for all. He is currently working on a poetry anthology and a novel. Please visit Dillon’s website at www.dillonsbuzz.com.

  The Spirit of Travis

  Today, we reconnected with college friends who were running in the Utica Boilermaker, a 15K run with more than 12,000 participants. Thousands more cheered the athletes along the hilly course.

  Many spectators also wondered if they had the potential to run. Halfhearted boasts could be heard throughout the crowd about how “Next year, I’ll be running instead of watching.”

  Everyone met at the finish line to celebrate the competition. Friends and families alike shared stories about the hardest part of the race, and how invigorating and inspired they felt upon finishing the course.

  Thousands of people gathered together to listen to music and share in the joy of competition. Two hours after the last runner had crossed the finish line, the fanfare was interrupted by an announcement.

  “We have just been informed that one runner is still out on the course,” a race official said over the loudspeaker. “His name is Travis, and he’s ten years old. He is in a traditional (non-racing) wheelchair and only using one arm to propel himself. And he really wants to finish the race. The race sponsors have just informed us that they will give Travis a $3,000 racing wheelchair if he finishes the race. They are asking people to support him along the course and cheer him on during his last mile.”

  Within seconds, the crowd dispersed, forgetting their own moments of glory so they could reach out to Travis. Within fifteen minutes after the announcement, thousands of people—racers and fans alike—lined the street chanting, “Travis, Travis, Travis . . .”

  Soon, Travis appeared over the hill, with a caravan of police cars and runners alongside him. Travis was filled with sheer exhaustion, yet radiant with the belief that he would reach what had once been a nearly insurmountable goal. The crowd cheered with as much determination as Travis was displaying.

  While he could feel the outpouring of love, Travis could not “see” the crowd’s support, since his focus was on the finish line ahead. With his mom by his side for four hours and fifteen minutes, he endured the journey.

  Travis is blind to the limits . . . he could only see with his heart.

  The cheering grew to a fever pitch, and tears flowed freely as Travis labored across the finish line.

  Teresa D. Huggins

  Teresa D. Huggins inspires people to live life fully, empowers others to transform obstacles into opportunities, and offers strategies that assist people to discover the possibilities within the problems. She facilitates weekend renewal programs and offers inspirational keynote speeches, one-day seminars, and teen leadership camps. She is the author of Whispers of the Wind: Wisdom in a Moment and There’s Another Way: Heart Centered Education, and is the coauthor of You Are Never Too Old to Dream, Dare, and Dance. She can be reached at www.teresadhuggins.com or 315-853-5064.

  Amanda’s Triumphant March

  The most striking fact about the disabled population is that it is the most inclusive. I will never be black, and I will never be a woman, but I could become disabled on the drive home tonight.

  George Will

  It was the end of summer vacation, 1965. In two days, I would join my friends and classmates at the new high school built in the center of town. I had just completed driver’s education, and my new license was hot in my pocket. As I breezed through the school parking lot in my blue Mustang, I kept the windows rolled down and turned the radio volume full-blast for Top 40 hits like, “Stop! In the Name of Love,” “Hang on Sloopy,” and “My Girl.”

  The first days of school were filled with the pungent smells and polished sparkle of newness. An air of anticipation stirred in every new club and team tryout. The halls vibrated, and the bleachers rocked with chants: “We are the Titans, the mighty, mighty Titans!” I soon found my place performing in school plays and organizing pep rallies. I was, I admit, more interested in the social aspects of high school than academics. My life was not complicated. I had never encountered any obstacle worse than braces on my teeth or an untimely pimple on my face. In those days, I took perfect health for granted.

  The young woman who would leave a lasting imprint on my life sat across the aisle in my second-period geometry class. Her name was Amanda. She was a slender girl with softly curled, shoulder-length hair. She had beautiful eyes and long lashes, although they were usually hidden behind oversized glasses. She always had her homework, and she never passed notes to friends or talked in class. That’s all I knew about her, except that I did notice Amanda move through the hallways with an uneven gait. She kept her eyes fastened on her books, which she clutched to her chest.

  One of Amanda’s legs was shorter than the other, and she had a dropped foot that was malformed and tiny. Her smaller foot wore a serious-looking orthopedic shoe. Her other foot wore a beautiful shoe, color-coordinated with meticulously planned outfits. The “beautiful shoe” was always in the latest style, the most popular name brand.

  If Amanda had been any other girl in class, I would have proclaimed, “I love your shoes! They’re Pappagallos, aren’t they?” But at the time, I couldn’t imagine saying “I love your shoe” in reference to only one of them.

  One afternoon, as the final bell brought the school day to a close, the air suddenly erupted with enthusiastic squeals. My friends and I stood around our lockers, laughing and talking. We decided our group should try out for our school’s first-ever marching drill team. Wouldn’t it be cool to march on the football field at halftime and hang out at the pizza parlor after the game? We pantomimed with imaginary pom-poms and laughed at our own goofiness. Still, we took tryouts very seriously.

  My friends and I practiced every day. And we weren’t the only ones. Not one of us expected hundreds of girls to sign up with hopes of becoming one of fifty chosen for the team. Each girl took a number and performed her carefully studied routine, while the band director scribbled notes on a clipboard.

  On day four of the tryouts, clusters of girls milled about the sidelines. Suddenly, the hum of chattering voices fell silent. The school lobby became perfectly still. Out of the silence, a number was called. A moment later, it was called a second time. “Who is she?” a friend asked.

  Looking toward the starting line, I recognized Amanda from my geometry class. She was holding her head high and smiling, waiting for a nod from the band director. On cue, Amanda marched triumphantly across the school lobby with nearly 300 girls watching.

  I vividly recall the rush of whispers, the bewildered expressions, and how my stomach tightened as some of the participants shielded cruel remarks behind cupped hands. I was hit by a tidal wave of remorse for their rudeness, followed by a second wave of admiration for Amanda.

  That evening, I struggled to concentrate on my homework. I couldn’t get Amanda off my mind. For the first time, I tried to imagine myself in her shoes—in both of her shoes. I tossed and turned that night
as I thought about the drill team. I wondered if she was awake thinking about it, too.

  By 8:00 the next morning, a crowd of anxious girls surrounded the list of names posted on the door of the band room.

  By second period, I sat at my desk rushing to finish my geometry homework in the final two minutes before the bell. I glanced up from my work to see Amanda making her way to the seat across from mine. She paused in front of my desk. “Congratulations,” she said. “I am really happy you made the team.”

  My friends and I had already waded through the early-morning frenzy to check the list of names posted on the band-room door. My name was one of the fifty that made the team. When I searched for Amanda’s name, it wasn’t there. I was not entirely surprised, but it took the joy out of seeing my own name on that list. My eyes welled up when I saw Amanda’s sincere smile. “Thank you” was all that I could stammer.

  I wish that I had told her how courageous I thought she was, but I never did. I was afraid it might embarrass her. I didn’t want to say anything that might in any way call attention to her disability. How stupid is that? People with disabilities live with them every day. It was my own embarrassment, not hers, that was the problem.

  The 1970s rolled in, and I joined the ranks of 54 million people with disabilities, which I learned was the largest minority group in the country. In my early twenties, I was diagnosed with rheumatoid arthritis. I spent five years in and out of hospitals and rehabs having my knees, hips, and shoulders replaced with artificial joints. Nearly a decade had passed since my high-school days, and I was just beginning to understand the empowerment Amanda demonstrated when she surmounted her disability and found the strength to try—just like anyone else.