REMEMBERING

Marcie Wilson rose from the pew and made her way up to the pulpit. This was a moment she had dreaded her entire adult life, but now that it was here, she had no choice but to persevere.

In her left hand, she held some tissues and in her right were the notes she had carefully made – but now as she looked out at the family and friends gathered in the beautiful sanctuary, she realized the slips of paper would not be needed. She wanted to speak from her heart because there were no written words that could truly express her love for the person who had shaped her view of life.

Struggling to control her grief, Marcie cleared her throat and slowly began her eulogy. “The years have gone by so fast; it is unsettling. At this moment, I would give anything to go back in time and relive the relationship I had with my brother all over again. I’m certain I would make an even greater effort to appreciate each and every second we shared together.

“But I’m just being selfish. I always felt grateful to have Bradley in my life, and there is no doubt I was the luckiest person in the world to be his sister.

“As you know, Brad was born with Down syndrome. At the time of his birth in 1960, there were no services, programs or supports for people with developmental disabilities. In fact, you could easily go through your entire life without ever meeting someone with that diagnosis. Individuals with an extra chromosome were rarely seen in public and consequently, most people had little actual knowledge about men and women with intellectual challenges.

“Instead, misconceptions flourished, leading to judgment and opinions that were based on beliefs – not facts.

“From the moment Bradley was born, my parents were pressured by doctors to make their lives easier by not being burdened with a child who the so-called experts claimed would never have a normal life. My mom and dad were told, with great assurance, that it’d be best for all concerned if my brother was placed in an institution with his own kind. 

“But, thankfully, my parents knew better. While others might have considered Bradley to be a burden – to them he was just their little boy, and they loved him with all their hearts.

“As he was growing up, there were few opportunities for my brother to be included in society. However, our family was fortunate to live in a large enough metropolitan area so he could go to a vocational type of center that was part adult daycare, some education and, as he got older, vocational training.

“My brother was never mainstreamed in any sense of the word, but at least he was not forced to remain hidden like so many other people with developmental disabilities.

“But when I was a little girl, I did not understand any of that. As a child, having a brother with a disability was the only life I knew; therefore, it didn’t seem different to me. It was just the way things were. I grew up in a happy home with loving parents and the most wonderful sibling you could ever have. In fact, I’ve never had another relationship with a person that was based on such complete honesty and trust.         

“Bradley seemed to embody almost every positive quality you would want in a loved one. He was thoughtful, generous and compassionate. He was gentle and kind. He always thought that each person he met was a potential friend, and he never lost his faith in humanity no matter how people reacted to him. 

“The most serious issue he ever faced was being forced to deal with the attitudes of others. 

“My brother was incapable of verbal or physical cruelty – even though at times in his life he endured both. It was inconceivable to me why anyone would want to hurt him. What had he ever done to deserve such abuse? But no matter how poorly he was treated, he was always willing to forgive. In fact, his capacity for forgiveness was astounding. 

“As his younger sister, I admired that amazing quality, however, I did not possess that particular attribute. I spent a good part of my early school years defending Bradley against the unwarranted attacks of bullies, and I was happy to do so.”

Marcie wanted to be as truthful as possible regarding her brother.

“I want to take a moment and stress that having Down syndrome did not mean that my brother had no faults. Sometimes people depict individuals with that diagnosis unrealistically. Was my brother always happy? No, of course not. Just like anyone he could get frustrated or angry. He occasionally had a temper. He would get mad and pout just like me.

“As siblings, we competed for the attention of our parents. We sometimes squabbled and fought just like any brother and sister – and that is the point. Our family was just like any other. The fact that one member had a particular challenge did change the reality of our everyday existence. 

“But outside of our family, life could be very difficult. When he was young, my brother was ignored by other children. Although he was talkative and friendly, few were willing to make an effort to connect with him. That was not only a loss for Bradley but for them as well.

“My brother was never invited to a birthday party. There were no overnight stays at a friend’s house. He was never chosen to be on a team in any sport – and I have to believe that it was the parents who instilled in their children the belief that my brother should be avoided and not included.

“I never understood why people were so quick to judge Bradley without knowing him. They just automatically assumed that he couldn’t do something before he even had the chance to try. That was infuriating to me. It is only fair that every person should have the opportunity to reach their potential.

“However, in those days that was not the accepted norm. Men and women with developmental disabilities were considered inferior. They were not considered to be equal citizens. Their rights were ignored and, therefore, denied.

“But through it all, my brother never gave up on people. He always believed that each person was worth knowing and understanding.

“Thankfully, we live in a different time now. People with all types of intellectual challenges are finally receiving the acceptance they deserve. Although we still have a long way to go, it is certainly better than it was fifty years ago when Bradley was young.

“Although our family faced many issues regarding my brother, we were happy children.

“Bradley had the most contagious laugh I’ve ever heard. As a child, and even as an adult, it remained one of the great joys in my life to make him giggle uncontrollably. His absolute delight in the everyday things that so many of us take for granted was a pleasure to witness. He constantly found new sources of amusement and wonder, and he never stopped enjoying every moment of his life.

“On the other hand, my brother could also be stubborn to the point of being comical. This was especially true at mealtimes. Under no circumstances would he ever consider eating fish. No matter how it was prepared, he didn’t like the smell of it or the look of it. However, he loved to go fishing with our dad, as long as he didn’t have to touch the bait or the fish he caught. Mainly he just liked sitting in the boat.

“On our refrigerator was a long list of foods that Bradley refused to eat. In order to avoid the inevitable test of wills, my mother did her best to plan meals that would work around the forbidden food choices, but it wasn’t easy. If she was fixing something that she knew Bradley would refuse, she had a fallback meal for him that he would’ve happily eaten seven days a week. It was macaroni and cheese – and, incredibly, fish sticks!

“I spent years trying to convince my brother that fish sticks were actually fish just like he caught in the boat, but he never believed it.

“Growing up, Bradley was funny and playful. He loved board games – as long as he could make up the rules. He had no interest in playing the game the way it was designed. Of course, the rule changes did not benefit him. He was not trying to win, he just wanted to keep the game going. But it didn’t matter to me because there was nothing that made him giggle more than changing the rules just as you were about to win.

“Some of my fondest memories of childhood were the times my brother and I spent together in the kitchen with my mom. She was a wonderful cook, and she always allowed the two of us to assist her. She would give us each a task we could handle, and it always made the cookies and cupcakes taste better because we helped.

“As I’ve grown older, I’ve come to understand that, although we tend to focus on the dramatic events, it’s actually the small everyday pleasures that enrich our lives. Cooking in the kitchen with my mom and brother gave me as much pleasure as anything I’ve done or accomplished. It’s a shame that we only realize the importance of the time we spend with our loved ones once the opportunity to be with them is lost. 

“There were many things in life that my brother enjoyed and one of them was music. He was drawn to it, and he enjoyed listening to me play the piano. I took lessons for years, against my will I might add, but in the end, I was glad that I learned how to play. We spent many happy hours together at that piano.

“In the last few years, his favorite song was a beautiful instrumental piece called Goodnight by the brilliant British composer Helen Jane Long. If Bradley was worried or upset about something, he would always ask me to play that tune for him, and he would immediately begin to relax and calm down.

“But there was nothing that made Bradley as happy as being an uncle.” Marcie looked out at her son and daughter. “My children dearly loved their Uncle Brad, and he loved them. After my parents passed away, they were thrilled when he came to live with us. My daughter, who was eight at the time, said that he completed our family, and I believe she was right. He provided my children with a wonderful example of what unconditional love really means.

“I believe having Bradley in their daily lives opened their hearts to the absolute truth that every life is equal – with no exceptions.

“My children got to witness first hand a person who was tolerant of others and deserved the same consideration from them. They learned about perseverance and persistence as they watched their uncle continually attempt to overcome challenges that they did not have to face.”

Marcie paused and looked down at another individual sitting near the front of the sanctuary.

“I’d like to take a moment to acknowledge someone else who is here with us today. This young lady was the love of Bradley’s life.” Marcie smiled at a petite woman with Down syndrome sitting in the second row with her family.

“Angelina and Bradley were boyfriend and girlfriend for more than twenty years. They truly loved each other, and at one point they even considered getting married, but eventually, they decided they were happy with their relationship the way it was.

“In fact, they were together for so long, it’s now hard to remember a time when Angelina wasn’t part of our family.”

Marcie smiled warmly at the woman.

“Angelina is a wonderful person, and I must mention that she is quite talented.

“As I said, Bradley loved music, and he met Angelina at a choir for people with special needs. She has a beautiful voice and quickly became a soloist.”

At this point, even on such a heartbreaking occasion, Marcie could not help but chuckle. “However, my dear sweet brother was not blessed with such talent. Although he loved to sing, that did not mean he could carry a tune.

“Angelina was always in the front row of the choir so she could step forward and perform her lovely solos. Bradley, however, was gently placed as far back as possible. I’m sure it was in the futile hope that he would be drowned out by the other voices, but that was not an easy thing to do. My brother’s unique singing style was to throw his head back and ardently search for the ever-elusive notes at full volume. Sometimes he would find them, but it was just as likely he would not.

“But what he lacked in tone and pitch, he more than made up for with unadulterated enthusiasm. He was a natural showman who poured his heart and soul into every song and audiences always seemed to appreciate his entertaining efforts even as they cringed at the sour notes.”

Marcie squeezed the tissues in her hand as she gathered her strength to continue.

“A few months ago, the first sign that something was wrong with Bradley was when he stopped wanting to go to choir practice. He just kept saying he was too tired.

“That led to multiple trips to doctors and specialists who performed a battery of tests. Eventually, his illness was diagnosed.

“It was heartbreaking how rapidly Bradley’s health declined. But although he changed physically, his personality and spirit remained the same. His outlook on life was still positive and upbeat. I don’t know how he did it. I now realize I’m not as strong a person as my brother was, and, in many ways, I’m not as wise as either.

“Throughout his ordeal, he stayed focused on the things that mattered; his family and his friends. When it became obvious, he would no longer be able to hold down his job, his coworkers threw a retirement party for him, and he was thrilled.

“One evening, after he’d become too sick to leave the house, the special needs choir came to our home and sang for him. It was one of the most beautiful things I’ve ever seen. Throughout his illness, people were kind and thoughtful to him, and I will never forget it.

“As his condition deteriorated, he was overwhelmed with exhaustion, and I believe he was ready to face the end. He seemed at peace and was relatively free of pain. He spent his last few days drifting in and out as he laid on the couch surrounded by all of us who loved him so much.

“As we kept a vigil, I couldn’t stop thinking that I would give anything to be able to save my brother’s life, but there was nothing I could do. I felt helpless and useless.

“Late in the afternoon on the last day, Bradley woke up briefly, and with his voice nothing more than a whisper he asked me to play the Helen Jane Long tune for him on the piano. With tears streaming down my face, I played the song over and over again as he listened and smiled. A short time later his awareness faded for a final time, and I laid down next him. I had my arms wrapped around him as he took his last breath and quietly slipped away.  

“Having already lost my mom and dad, I was well acquainted with the heart-wrenching grief that death brings, but losing my brother was particularly painful. After everything he had been through, it just didn’t seem fair. His death drove home the fact that living with an intellectual challenge does not exempt you from all of the other misery in life.

“Bradley’s death was a heartbreaking loss for all of those who loved him, but there are some who would claim that because my brother happened to be born with an extra chromosome, his life did not have meaning.

“It is true he did not achieve power, prestige or privilege. He had none of the accomplishments that society deems as important. But the people who think Bradley’s life didn’t matter could not be more wrong.

“In every way, his life mattered just as much as theirs.

“I know in my heart it would be a much kinder world if we all treated each other the way my brother treated people. There would be no hate, no intolerance, and no judgment. Each person would be accepted for who they are instead of for what they can or cannot do. They would not be judged by how many possessions they owned or how much money they had. They could live in a gated community or a group home, and they would be treated with the same dignity and respect.”

Before she concluded her remarks, Marcie wanted to make sure that everyone understood the reality of her brother’s diagnosis.

“Let me be clear about this. Individuals with Down syndrome are not saints. They are not angels. They are human beings like anyone else. However, they do seem to be blessed with an outlook on life that all of us would be wise to emulate. I don’t want to make Bradley into more than he was – but, by the same token, I won’t allow others to try to make him less.

“Too often my brother was only thought of as the ‘Down syndrome boy’. He was never just Brad. People seemed to see the diagnosis first, and that colored their opinion before they knew a single thing about him.

“My brother was not a collection of characteristics resulting from a chromosomal disorder; he was a person.

“Throughout his life, he touched many hearts and had a positive influence on everyone he met. I would not be the person I am today if I had not had Bradley as a brother, and my children would not have had the opportunity to experience the kind of unconditional love their uncle was happy to share.

“My brother lived his life with humility and without pretense. He was honest and hardworking. He was considerate of others. In many ways he was courageous, and he always tried to be a good person. Isn’t that the kind of life we should all lead? Aren’t those the values we should treasure?

“To this day there are still those who believe that having Down syndrome is not a life worth living. And I must admit that when I was younger, I felt deep anger for such individuals. But now my intense feelings have turned into profound sadness for people who live in such ignorance.

“My brother had just as much right to be part of this life as anyone else. Having an extra chromosome did not make him less of a person. An individual’s worth is not measured by genetic testing. It’s not altered by a diagnosis, disease, or disorder. And it’s certainly not defined by intellectual or physical challenges.

“Bradley’s humanity came from within. It shined through his personality. It was reflected in his thoughts which were turned into positive actions. That is why my brother was the most remarkable person I’ve ever met. And that is why it hurts so bad to think that I will never play the piano for him again.”

Marcie took a deep breath and looked down at her brother’s flower-draped casket. “I love you, Bradley. I am so thankful I was blessed to share your life.”

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