Chicken soup unsinkable.., p.23
Chicken Soup Unsinkable Soul, page 23
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specialist in a nearby city might give my parents answers to their puzzling questions.
Arrangements were hastily made. The fifty-mile drive became a journey of hopethe only hopefor the almost lifeless baby in my mother's arms.
Upon arriving, Troy was whisked away for a series of tests. Hours seemed endless as my parents waited in silence, lost in their thoughtsand fears.
On the third day, the doctor called them into his office. His message was bleak. Their seven-month-old son was a victim of Down's syndrome. He was also suffering from an enlarged heart, thyroid disorder and serious digestive problems. He wasn't likely to live; if he did, he would be severely mentally retarded.
My parents stood rigid, listening to the doctor as he spoke of the baby's uncertain futureand of the alternatives. They moved closer together, groping for each other's hands. In their minds, there was no alternative to consider.
"I am not a perfect man," my father said. "How can I demand a perfect child?"
"We will help him do the best he can with the abilities he has," my mother added, "the same as we have helped his brothers and sister."
Medication was prescribed to relieve much of Troy's suffering. Soon parents and child were huddled together in the front seat of the car, driving home.
Troy responded well to the medication and his weight gradually increased. The crises of the first months faded.
There were no small accomplishments in Troy's development. Each achievement was recognized and celebrated by the entire family with the fanfare of the Academy Awards. As he grew, he was encouraged to explore. Colorful objects were placed within his reach. His ears were constantly entertained with simple words that
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were easy to pronounce. Special handles were installed on the window sills to help him stand on his unsteady legs, so that he could watch the older children at play outside. Troy rewarded the family for their care and encouragement with angelic smiles.
Shortly before his second birthday, Troy became ill with erysipelas, a dreadfully painful disease that causes the skin to become blotchy, swollen and red. He whimpered while my parents took turns bathing his feverish body. My mother sang lullabies and stroked his flushed face for hours in an effort to soothe him. He hovered near death for weeks, then months.
Gradually Troy's swollen hands returned to normal and the hours of restless wakefulness gave way to peaceful sleep. Six months of illness came to an end. The baby had bravely fought and won another crucial battle.
During this time my mother became pregnant with me. I was born in the same farmhouse as Troy, with my grandmother, a neighbor and the country doctor in attendance.
From babyhood, Troy was my constant companion. As I learned to walk, he, too, took his first faltering steps. Repeating sounds I made became a game with Troy, which thrilled my parents as they strained their ears to hear an actual word.
Occasionally we were given a treat, usually a large red apple. We would squeal with delight as my mother held the colorful fruit just beyond our grasp, patiently repeating the word ''apple."
Once during this familiar ritual, Troy's eyes fixed intensely on the luscious fruit, and he pronounced his first word: "apple." Mother quickly summoned my father from the field. The older children hurried in from their chores. Troy was on stage and he knew it. Again and again he said the word, clapping his hands together, as the family cheered him on.
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After that his vocabulary increased slowly and steadily. Although he was never able to speak clearly or distinctly, and his sentences were often slow and incomplete, his halting words eloquently conveyed thoughts and ideas that were uniquely his own.
For the next few years, Troy's and my life was happy and rather normal. We spent our days making mud pies, riding stick horses and cutting paper dolls out of old catalogs. We shared responsibility for simple chores around the house, and we were punished equally for our frequent mischief.
Our formal schooling started when I was five. The school board had decided Troy should attend public school. Together we walked three miles to our first day of school, stopping along the way to inspect a variety of bugs crossing our path.
The children in the community had grown up realizing Troy was different, and from most of the students he received gentle affection. I was a fierce protector of my brother and he accepted my being his keeper without complaining.
The teachers were generous with their time and attention. Troy was issued learning material along with the rest of the class, but he usually spent his time coloring in a special book. His citizenship was excellent. He was quiet and obedient in the classroom, and cheerful and cooperative on the playground. Each year he was promoted with a straight-A report card. He loved being praised for his outstanding achievements.
Soon sports and boys became big things in my life. I reveled in my new social worlda world in which my brother sadly could not belong.
My parents saw a need for change. My graduation from high school was the beginning of the transition. A week of careful planning went into a ceremony that would take
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place in our living room, "graduating" my brother from high school.
Mother drove fifty miles to buy a class ring at a pawn shop. Troy was delighted, sporting the ring proudly on his finger as he tried on my graduation cap and gown.
We were in a dilemma, wondering how to explain why we were having his ceremony at home, when everyone else had theirs at school. My mother was inspired to pray for rain. Sure enough the following morning rain drenched the dirt roads, making them impassable.
With a sigh of relief, Dad announced, "The graduation must go on."
Mother dressed Troy in my cap and gown. The family assembled in the living room.
I played "Amazing Grace," the only song I knew how to play on the piano. Troy marched in and stood proudly in front of my father, who was dressed in his Sunday best.
Daddy made a speech about Troy's great accomplishments and then handed him his diplomaa white sheet of paper with his name on it, rolled up and tied with a ribbon. Troy shook Daddy's hand, then quickly moved the tassel from one side of the cap to the other.
We all stood, giving thunderous applause. Mother's eyes brimmed with tears as she drew Troy into her arms. How proud he was!
No longer a student, Troy would soon be given more responsibility at home. For the rest of his life, he would relish his new role as an adult and perform any work he was asked to do with meticulous care.
Looking back on that faraway living-room graduation, I remember being filled with awe and joy at the amazing journey we had shared with Troy which had brought us to that moment: from his physically afflicted infancy when he twice almost died, to a babyhood full of
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challenges most families never dream of, to an education that taught many of his teachers and fellow students their greatest lessons in courage and humanity.
Through it all, Troy's capacity to love was boundless; the tenderness and kindness he demonstrated to everyone he encountered was unsurpassed; and the wide-eyed innocence with which he met the world never wavered.
Lila Jones Cathey
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Mothers of Disabled Children
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year, nearly one hundred thousand women will become mothers of handicapped children. Did you ever wonder how these mothers of handicapped children are chosen?
Somehow visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth: son, patron saint, Matthew. Forest, Marjorie: daughter, patron saint, Cecelia.
"Rudledge, Carrie: twins, patron saint . . . give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles. "Give her a blind child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," says God. "Could I give a child with a handicap to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
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"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps. "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I seeignorance, cruelty, prejudiceand allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, pen poised in midair.
God smiles. "A mirror will suffice."
Erma Bombeck
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7
ON ATTITUDE
My company mascot is the bumblebee. Because of its tiny wings and heavy body, aerodynamically the bumblebee shouldn't be able to fly. But the bumblebee doesn't know that, so it flies anyway.
Mary Kay Ash
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Third-Place Winner
His head lowered, an exhausted but determined young man chanted over and over to himself, "You can do this. You can do it, you can do it, you can do it." These words, spoken as much for encouragement as for confirmation, found a listening heart. Without fail they drove one foot in front of the other, up into the air and then downagain and again and again. The boy watched intently as one by one, his new sneakers methodically slapped the asphalt slowly passing beneath him. It was a very tired patter. Looking up, the youth wiped his brow and searched for a glimpse of the finish line. "It's somewhere up there," he told himself matter-of-factly.
It was far off in the distance. Even so, Chris Burke had his heart set on reaching it.
With great effort, he, too, crossed the finish line. By the time he did, photographers and reporters had already gathered around the young man who had taken first place. Cameras zoomed in and flashed; microphones stretched forward to absorb the winner's words.
With a smile that stretched from ear to ear, Chris jubilantly bounded over and proudly stood next to the winner. He wrapped his arm around the young man his own
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agesomeone he had never met prior to this event. Beaming, Chris patiently waited for the reporter to complete his interview with the victoras patiently as he could in a moment that held so much excitement for him. When at last the reporter turned to the camera to make concluding remarks, Chris instantly stepped forward and thrust out his hand to receive a congratulatory handshake. "Oh, boy!" Chris shouted, unable to restrain his obvious joy. "I just want to tell you what a thrill this was and how happy I am to have come in third!" The reporter had little choice but to respond to the charismatic and enthusiastic athlete, wanting his turn at recognition.
"Yes . . . tell us about it," stammered the startled reporter good-naturedly.
"Wow!" said Chris. "Thank you for asking me to be interviewed. This is great! Just great. Well, I'm just very happy to be here. It's such a great honor. Of course, I finished in third place. Third place, not bad! Not bad, huh?" He didn't need an answer to his question, and he didn't wait for one. Instead, he turned his animated face for all the world to seethis was national televisionand with more joy than I can remember from anyone, he said, "Thank you all for sharing in this very special time with me. It's time to celebrate!" With that, Chris turned, and ran over to line up for hugs and handshakes alongside the winner.
Chris was fourteen years old at the time. This was the Special Olympics.
There were only three runners in the entire race.
Bettie B. Youngs
Excerpted from Gifts of the Heart
[CONTRIBUTOR'S NOTE: To appreciate the full significance of Chris's story one must recognize Chris has Down's syndrome, a condition caused by a gene malfunction. Children with Down's
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syndrome are born with one too many chromosomes, resulting in an uncanny similarity in appearance, thwarted development and a ceiling on potential. Since IQ peaks out at around 75, capability and ability are severely limitedor so it was once thought. When Chris was born in 1965, physicians recommended that parents place babies with Down's syndrome in institutions, the majority of which did little more than offer physical caretaking.
Most of the world now knows Chris Burke not only from his unforgettable interview years ago, but also as the charismatic and gifted television actor and star of the television series, Life Goes On. The show enjoyed four years of excellent ratings.]
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Challenger Baseball
Sports don't build characterthey reveal it!
Heywood Hale Broun
In Little League baseball, there is a division known as the Challenger Division, for developmentally disabled youngsters. As a clinical psychologist, I had completed a postdoctoral psychology fellowship in developmental disabilities at the Neuropsychiatric Institute at UCLA. I was not aware of the Challenger division, however, until I gave a talk on positive coaching at our local Little League. A dad there asked if I would be willing to help out occasionally with the Challenger kids. I agreed.
I don't know what I expected, but when I got to the first game, it was an eye-opener. I saw a group of kids ranging in age from six to sixteen. Some had Down's syndrome, some had cerebral palsy, some had spina bifida, some had suffered oxygen deprivation at birth and some were autistic. But they all had one thing in commonthey were having fun!
There is a ''buddy" system in the Challenger Division, whereby each kid on the team has a helper who shadows
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him or her throughout the gamepushing a wheelchair, pointing out where to throw the ball or doing whatever else might be needed. Almost all of the buddies at this particular game were siblings or parents.
What I didn't see at the game were many spectators other than parents. Although the Challengers were considered part of the league, their games had been relegated to Sundayall the other kids played on Saturday. When I saw the fun these kids were havingall the high-fives, the cheering for both sides, the atmosphere of fun and gamesI couldn't help but compare it to a Little League game I had seen the day before with nine-year-olds. In that game, within a period of ten seconds, I saw a left fielder crying because he dropped a fly ball; a mother, neck veins bulging, yelling at the umpire; a coach screaming at his pitcher to "follow through" or he was going to replace him.
Suddenly it became clear to me how important it was to get Challenger games scheduled among the other Little League gamesboth for the exposure of the Challenger kids to the other kids, and for the lessons in sportsmanship and fun they could give the other kids and parents.
