Handicapped

The clanging of metal rang in my ears. It filled the entire room with unceasing noise. There was no finesse—no particular rhythm. When I found the source of the endless clamor, I found my next younger brother sitting cross-legged in the corner behind the upholstered rocking chair. He was the musician. His choice of instrument was a large stainless steel bowl turned upside down on the floor in front of him. His drumsticks were two long wooden spoons. His face furrowed in concentration and delight as he rapidly beat the spoons on the base of the bowl. That face was unlike my face. It was a flat face, with a somewhat flat nose. His eyes were slanted, betraying his extra 21^st chromosome. He continued to beat on the bowl. As a girl of only 4, I did not understand why he thought it was so much fun. Neither did I understand why it brought smiles to my parents' faces. Even at this age, he was bringing smiles to the faces of people around him.

My favorite brother was born with Down's Syndrome. I was so young when he was born that I did not realize he was different than I was. He grew up smack in the middle of a family of seven energetic children. When he was four, he developed a reaction to food that my mom thought was Celiac's Disease. It meant that when he ate anything that was made from wheat flour, he would become violently ill. He faced the upheaval of unexpected nausea and changing diet with a sense of normalcy that rivaled those of us faced with much smaller problems. While I, who had no physical issues whatsoever, complained that my older brothers left me sitting in the house while they roamed the woods; he merely smiled, then sat on the wooden stairs and rocked a doll while I pretended to play church.

His speech was thick and difficult to understand. By age four, my parents enrolled him in speech therapy. In years to come, my mom would say jokingly, “We enrolled him in speech therapy because we couldn't get him to talk. Now we can't get him to shut up.” As he learned to speak more clearly, he would confront anyone. There was no stranger to his verbal attack of cheerfulness and friendliness. He would corner an adult and barrage him with questions, oblivious to the fact that the adult was reacting like a fish out of water. The adult would respond, “I'm sorry, what did you say?” Durrel would repeat the question only to be met with an even more nervous, confused response. Eventually the adult would mumble, “Yeah, mm-hmm,” and retract himself from the conversation as though a heavy weight had just been lifted from his shoulders. Durrel would simply move on to his next target. While Durrel met every person with friendliness, I tended toward pessimism even at a young age. When friends rejected me, I retreated to my mother, my high-pitched whine rivaling a siren. Eventually, I found that if I used his approach to people, I made friends. Friendly people are so much more welcoming than pessimists. Instead of crying when people treated me wrong, I moved on and found that people who really cared about me existed and were worth the energy of friendship more than the ones who slunk away at the earliest opportunity.

The percussion session in our living room was just the beginning of endless energy and passion. Whatever Durrel set his mind to was done with gusto and flair. Even more so if people were watching him perform. Whether a dancing monkey or a clown or an adorable little boy who could twist himself up like a pretzel, Durrel could be the center of attention without trying. One evening, I strained and stretched in attempt to reach my feet up behind my head. Durrel could do it, so why couldn't I?

In his upper teenage years, he developed an interest in Southern Gospel music. Whenever I visited home, he animatedly told me about the latest band he was interested in. He would coax me into watching his favorite Ernie Hause and Signature Sound DVD. As I watched, I would make a mental list of all the things I disliked about the style of music. While he watched, he stood upright, hand to his mouth, belting out the lowest possible note he could reach. Every now and then, he would blend in perfect harmony with those singing. He was the star of his very own American Idol. His stage was the living room. His audience none other than his big sister. Suddenly, I became aware of the catchy beat and the joyfulness of the songs. It was like he was back behind that old battered rocking chair once again. The pure joy of music reflected in his eyes, forgotten the frustrations of trying to meet expectations. And I envied him.

I went to serve a year of voluntary service, when I was eighteen, at a home for those with intellectual and physical disabilities. The residents I met at this home often unnerved others. I, however, saw individuals with unique personalities. I found humor in the stubbornness of Cheri, who would refuse to swallow her medication night after night, even though she knew she had to swallow in order to be able to eat her dinner. On numerous occasions, I blushed in mortification and then laughed until I cried when I realized that one of the residents had escaped the shower when I was not paying attention, and had attempted to streak down the main hall of the home. I received slobbery kisses on my cheek and understood that it was a sign of safety and comfort. Each one of these individuals that I met wormed their way into my heart. I do not think that would have happened without Durrel. He helped to shape me into the human being that I am. While I served at this home, he came to spend a week with me. By the end of the week, he knew the names of most of my friends as well as quite a few birthdays.

I moved on to my freshman year of college, and my parents and Durrel came to visit. My family is one of those half-way physically affectionate families. We hug, but then find something to talk about quickly so the obvious affection does not become uncomfortable. I was somewhat surprised then at this visit, when Durrel wrapped me in a giant bear hug and kissed me on the cheek. For several seconds, I was the blithering idiot who nervously giggled then realized that it felt good to be loved with that sort of freedom. It was a defining point in my relationship with him.

During my sophomore year, he again came to visit me during finals week. I gave him nearly free reign to meet whomever he chose. He was fascinated by all of the exams I was taking and proceeded to administer some of his own “exams” in the dining hall. He accosted my choir conductor and somehow convinced him to sit down and take his exam. One of my friends sat and wrote freestyle for ten minutes until Durrel was satisfied the exam was complete. He required everyone to write down their name and address which helped him in his letter writing process.

He has the reading level of a child partway through first grade. He knows his alphabet but does not know how to write out complete thoughts on his own. He will copy something that another has written or simply write random combinations of letters in order to make a letter complete. I received a letter from him last Christmas. While much of it was nonsensical, other parts of it consisted of names and addresses from his address book. Each letter was painstakingly traced numerous times. As I ran my hand over the paper, I felt the ridges that had been created from the pressure that he placed on the pen as it traced each section of the letter. The bold black ink stood out from the whiteness of the paper, and I realized that what I held in my hand was not only a labor of love. It was a work of art. It was more beautiful to me than an expected Christmas card with warm wishes for a happy holiday. It was the essence of his character on paper. It was not a letter of unintelligible scrawls, rather a time-laden project which he finished to make me happy. I had not even gotten him a card.

On the surface, he seems like the kind of person who takes things in stride. Our family was working through the divorce of one of my brothers. Things were difficult for everyone as we attempted to find each of our roles within the situation. One day, Mom heard him talking while he was in the restroom. She listened closely and realized that he was praying, “I pray for my brother that you would be with him. In Jesus Name, Amen.” This same sensitive spirit came out at the recent wedding of a friend. He wanted to give a speech at the open mic and nothing would deter him. My sister and I went along to the mic with him. He talked for several minutes while we listened, realizing that not everyone in the audience could make sense out of what he was saying. What was understood was loud and clear: “Josh, you've been a good friend. And you've made a good decision today to get married.” He deserved a standing ovation; I have never been quite so proud of him in my life.

Since he was next younger than I, he suffered untold amounts of teasing and pesting from me. Despite my persistent teasing, he would always love me. He had dreams of doing all the things that the rest of us siblings were able to do. After my year of voluntary service, he talked for years about going to work at the home as a staff. He now talks about moving to Pennsylvania to live with me. Maybe one day that will come to pass. Through the disappointments he has faced, the rejection of people to his face, and the unfulfilled dreams, he still moves forward. He finds new dreams. He forgives and loves as though he has a sense of what people really need despite their protests. He embodies strength and stability. He is my hero.

I love music and am training to be a professional soloist and voice teacher. I sing beautiful music every day. But I envy the abandon with which he sings. He does not worry about the audience. He just sings and every part of the room lights up when he does. As I listen to the slightly off-pitch growl of his voice, the goosebumps that skitter across my arms make me realize that what I may have in talent, I sometimes lack in soul. Durrel—he has soul to the very tips of his big toes. When I sing today, I think about that little red-headed boy, eyes full of excitement, rat-a-tapping away on that stainless steel bowl. I imagine him belting out his favorite Gospel hymn. And I smile. I realize that I am the handicapped one. I am often handicapped by many different kinds of fear. But if I allow myself to be freed by the same passion he possesses, then we both have the chance to live as the whole individuals we are meant to be.

 

Note: This post was written as an assignment for my WRT 205 class. It is a tribute to my brother, whom I would not trade for the world!