Struggle and Victory
By Lila Jones Cathey
In a small farmhouse fifteen miles from the nearest town, my mother gave birth to her fourth child — a fragile boy, with a fair complexion and a fretful cry.

Troy was an unusually restless baby, with a delicate digestive system. Feedings were a struggle, as my parents desperately tried one formula after another in an attempt to nourish the frail child. At four months, Troy weighed less than he had at birth.

The rural community had no sophisticated hospital, no pediatric specialist, no support groups. Only a tiny bed in a three-room house and a country doctor with limited knowledge of infant disease. My parents realized something was tragically wrong with their son, but didn't know what.

Every effort was made to make Troy comfortable; every remedy, regardless of how bizarre, was tried. Each day the baby grew weaker. The local doctor suggested that a 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 hope — the only hope — for 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 thoughts and 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 future — and 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 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.

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 world — a 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 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 diploma — a 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 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.