Mattie Stepanek – Attitude
In many ways, Mattie Stepanek was an ordinary kid. The skinny 13-year-old with blue eyes and blond hair liked pizza, barbequed ribs, and chocolate ice cream. He loved watching Saturday morning cartoons and enjoyed playing video games. Mattie’s favorite athletic teams were the Baltimore Orioles and the Washington Redskins. He wasn’t fond of cleaning his room and would sometimes procrastinate on his homework. The most striking feature about Mattie was his smile. If you didn’t know any better, you would think this happy-go-lucky child had it easy.
However, several noticeable characteristics set him apart from other kids his age. Mattie was confined to a wheelchair to help him move from place to place. He also had a tube that stuck out of the front of his neck called a tracheotomy, which in addition to a ventilator and oxygen tanks, helped him breathe. These extra devices were necessary because Mattie suffered from a rare form of muscular dystrophy. Unfortunately, this disease kept Mattie in and out of hospitals for most of his abbreviated life. He required weekly blood transfusions and was hooked up to an IV each night to stabilize his blood pressure. At several points in Mattie’s short life, his doctors were convinced he would not survive. His mother commented, “Mattie moves back and forth between probably dying and possibly dying.” Life never treated Mattie fairly.
However, this little boy never asked for life to be fair or easy. Despite the obstacles that life threw at him, Mattie approached every day with a positive attitude. He might not have been able to control all facets of his life, but he knew that “attitude is a choice,” and he continually chose to be an optimist. He was an extraordinary person with a kind heart. “With his unabashed enthusiasm for life, Mattie has charmed everyone who has crossed his path,” Jim Hawkins of Children’s Hospice International said. “Little Mattie has somehow acquired more wisdom in his short life than most of us do after decades of living.” Sadly, Mattie’s life was cut short on June 22, 2004, when he died at the age of 13 from complications related to muscular dystrophy.
Mattie Stepanek is the youngest person profiled in this book. His life clearly demonstrates that good character is not just reserved for adults. In fact, character knows no boundaries when it comes to age, ethnic background, gender, or religion. Every person is capable of taking responsibility for themselves, treating others with respect and acting with integrity. Doing so, however, requires a conscious choice. Every day of his life, Mattie strived to be a better person and to make a positive difference in the lives of others. Former President Jimmy Carter said, “Even a child who lives 10 or 11 years can have an enormous impact, and I think Mattie is one of those special people.” Millions of Americans have lived longer lives, but few inspired more people than Mattie did. While most adolescents can’t wait to reach adulthood, Mattie made his mark at a young age by living each and every day to the fullest, despite overwhelming obstacles.
Mattie was born on July 17, 1990, in Washington, D.C. He was born into a large family that included two older brothers and a younger sister. However, muscular dystrophy wreaked havoc on his family over a short period of time. Mattie’s oldest brother died from the disease at the age of two, and his older sister had died before Mattie was born, when she was just six months old. At first, doctors could not conclusively identify the cause of these premature deaths. However, in 1992 Mattie’s mother was diagnosed with adult-onset muscular dystrophy. The disease is genetic and unfortunately, she had passed it on to her children. Still grief-stricken from the death of her two oldest children, she learned that her third child, Jamie, and her youngest child, Mattie, also suffered from this debilitating disease. In what was turning out to be the cruelest of all fates, Jamie died at the age of four. At the time of Jamie’s death, Mattie was only three. The mind of a three-year-old has trouble understanding the concept of death. Mattie remembered the first time he saw his older brother in his small white casket. “I thought the funeral was a party for him, that he was playing hide-and-seek with me. I kept saying, ‘You can come out now, Jamie.’” The permanency of Jamie’s death finally hit Mattie when they placed his brother’s casket in the ground.
Mattie’s feelings were overwhelming and intense. To cope with the loss of his beloved brother, he began telling his mother what was in his heart. “Shh! Listen! That’s my heartsong!” he often said. Mattie’s mom thought his words were poetic and began writing them down. Years later she said, “I thought it was sweet at the time. Nothing more than sweet.” The words poured out of Mattie and he began to feel better. Through writing about his emotions, he began to find inner peace. He called these poems “heartsongs.” He explained what he meant by the unusual term: “A heartsong is like your inner message. It’s your inner beauty.”
As Mattie’s life progressed, he had more sad events to write about, including his parents’ divorce. Not only had he lost three of his siblings, but he was losing the solid foundation of a two-parent household. After the divorce, Mattie and his mother moved into a small apartment. Loss was becoming a major theme in Mattie’s life, and he continued to express his emotions through his poetry. By the time he was six, Mattie had written hundreds of poems. The poems continued to help him deal with the difficult realities of his life. Yet he didn’t just write about his sorrow. He wrote about his hopes and dreams. Despite all the heartache in his life, he was filled with undying optimism. His mother astutely noted, “In spite of the pain and in spite of the times that he says ‘why me?’ he is an eternal optimist.”
Mattie had a unique gift for looking at the bright side of things. “The disease is a curse at first sight, but I wouldn’t be me without it,” he said. “I haven’t given up. I don’t sit in the corner and cry about my life. I thank God for life. I make the fullest of it.” Thanks largely to this positive attitude, he accomplished more than anyone thought possible. Mattie was extremely intelligent and skipped several grades in elementary school. Unfortunately, his illness caused him to miss so much school that his mother decided to begin home schooling him when he was nine. Mattie explained, “Even though I would have some good days, I missed so much school that it was like I wasn’t really a part of the class anymore.” In the one-on-one environment that home schooling provides, Mattie zoomed through middle school. His mother had a master’s degree in education, so she introduced her son to a curriculum that included a healthy mix of high school and college courses. Much of his time was spent reading classic literature, studying history, and suffering through algebra.
Mattie seemed to want to fit as much into his short life as he could. One of the areas in which he excelled was martial arts. Before he was confined to a wheelchair, Mattie earned a black belt in Hapkido. Quite a remarkable feat for a small child, but as Mattie put it, “I choose to live until death, not spend the time dying until death occurs.” When the muscles in his legs weakened to the point that he had to use a wheelchair, he took the news in stride and actually nicknamed the chair “Slick.” “It’s disappointing that I haven’t been able to rollerblade and skateboard, but you know what? I’ve still had the best time,” Mattie said. “And because of my attitude, I’ve had a blast in the wheelchair.”
The specific name of Mattie’s illness is dysautonomic mitochondrial myopathy, one of the 43 neuromuscular diseases for which the Muscular Dystrophy Association (MDA) seeks a cure. Mattie’s disease is a rare form of muscular dystrophy that impairs the heart rate, breathing, blood pressure, and digestion. It also gradually weakens a person’s muscles, limiting the normal movement of arms and legs. The disease is particularly cruel because it gradually steals a person’s abilities, leaving them powerless to do anything to stop it. For some reason, patients who are afflicted with the disease at an early age have a much shorter life expectancy than those who are diagnosed as adults. Mattie wasn’t expected to live much longer than his siblings, but he kept beating the odds. “Every year the doctors tell my mom that I won’t make it another year—yet here I am,” he said.
The pain associated with muscular dystrophy can be excruciating. “The other day I felt like somebody was banging a hammer into my spine,” Mattie said. On one occasion, blood began to seep out of his lips, fingers, and toes. One of the worst bouts he had with the disease occurred during the summer of 2001, While in the intensive care unit, Mattie slipped into a coma for approximately two weeks. Even though he eventually woke up, his trachea flooded with water, making it nearly impossible for Mattie to breathe. The situation was grim; doctors told his mother that he had less than three days to live. It was about this time that the Make-A-Wish Foundation got involved.
The foundation grants final wishes to terminally ill children all over the world. Mattie’s wish was to meet his hero, former President Jimmy Carter. Mattie admired President Carter because of his efforts to inspire peace all over the world. President Carter surprised Mattie with a visit to his hospital room. According to Mattie’s mother, it was the first and only time in his life that he was speechless. President Carter said they formed an “instantaneous bond of love.” He went on to say, “That meeting and our subsequent relationship has literally changed my life for the better.” The visit must have had an equally positive impact on Mattie’s spirit because he miraculously recovered and went home. Apparently, Mattie still had work to do.
His other two wishes were to get the hundreds of poems he had written published and to appear on The Oprah Winfrey Show. He began with his mission to publish a book of his poetry. He and his mother sent his poems to dozens of publishers, but no one expressed interest. Mattie remained optimistic and determined. Finally, a small company, VSP Publishers, said yes and agreed to print a slim volume of his poems in a book entitled Heartsongs. Peter Barnes, a VSP representative, described his reaction upon reading Mattie’s poetry for the first time. “I was stunned. It was perceptive and thoughtful.” The company didn’t expect a large response to the book, so they printed only 200 copies. VSP Publishers likely hypothesized that printing the book was a good public relations move and the small number of books could be given to Mattie’s close friends and family.
However, once Mattie began promoting his book the response was enthusiastic and overwhelming. Audiences were inspired by listening to a 10-year-old with such a debilitating disease talk so optimistically about life, love, and peace. His message gave people hope and encouraged them to believe in the power of goodness. Jerry Lewis, chairperson of MDA, said, “His example made people want to reach for the best within themselves.” When Oprah Winfrey heard about Mattie’s remarkable story, she chartered a private jet to escort him to Chicago for an appearance on her show. “I fell in love with him,” Oprah said. She was inspired by his words and his positive attitude. They continued their relationship via e-mail. She later said of Mattie, “There was no braver soul, nor bigger spirit in so small and frail a body.”
Mattie continued to promote his book of poetry on talk shows and news programs around the country. The book quickly climbed to the top of the New York Times bestseller list, selling more than 500,000 copies. Clearly, Mattie’s poems struck a chord with Americans. Before long, there was a demand for more of his poetry. People wanted to view the beauty of the world through his eyes. Mattie went on to publish four more books, all of which contained the heartsongs theme: Journey Through Heartsongs, Hope Through Heartsongs, Celebrate Through Heartsongs and Loving Through Heartsongs. All of the books became bestsellers and together sold more than two million copies. As a tribute to his exceptional work, the Library of Congress requested a bound anthology of his works to be placed in the national archives.
By the age of 11, all three of Mattie’s wishes had been fulfilled. He had talked about world peace with President Carter, appeared on The Oprah Winfrey Show, and published his poetry to a wide audience. Most people his age would have been more than satisfied with these impressive achievements, but Mattie set additional goals. His optimism was clear when he wrote a list detailing his long-term goals of getting married, becoming a father, and living to be 101. “I have big dreams and I don’t stop dreaming them until they happen,” he wrote in an e-mail message to Oprah. Mattie loved making lists and setting goals—it kept him going. Mattie didn’t understand how some able-bodied people went through life without dreams, goals, and ambitions.
While Mattie died before he was able to achieve his long- term goals, he expressed a powerful philosophy that remains with us today. “Remember to play after every storm.” It’s a reminder that we all need to celebrate our accomplishments, even when life continues to knock us down. Mattie wanted to be remembered as “a poet, a philosopher who plays, and a peacemaker.” He expanded on this altruistic mission by saying, “We have to make peace an attitude. Then we have to make it a habit. Finally, we must decide to live peace, to share it around the world—not just talk about it.” One of Mattie’s unrealized goals was to write a book with President Carter, who had just won the 2002 Nobel Peace Prize. Mattie even had an appropriate title picked out—Just Peace.
From 2002 to 2004 Mattie served as the MDA National Ambassador and helped to raise money to find a cure for muscular dystrophy. When asked about his role with the organization, he was always upbeat. “I love doing stuff for MDA and am glad that I can continue to help,” he said. “We’re raising money for a cure and on the way we’re finding ways to keep celebrating.” While appearing on the annual Labor Day telethon, Mattie became fast friends with Jerry Lewis. Lewis is so closely associated with MDA that kids diagnosed with the disease are often referred to as “Jerry’s Kids.” Lewis was particularly taken in by Mattie’s charisma, saying, “With Mattie, there was always a silver lining. Life threw its worst at him and he responded by seeing the good. He was—he is—a shining star.”
This child who was not supposed to live more than a few years in this world was living out his dreams. And the only thing he asked for was time—time to spread his message of peace.
If you ask most little boys what they want for Christmas, they almost always recite a long list of toys. When Oprah asked Mattie what he wanted for Christmas, he humbly said, “If it’s not too much trouble, I’d like you to pray for me.” When his mother was asked what she wished for, she said, “I want time with my son. I want time that we both have to continue celebrating life.” Their simple wishes remind us just how precious life really is. If we could just take a step back and view life from Mattie’s perspective, we would soon realize how insignificant our daily problems can be. Mattie’s example should teach us not to be so concerned with the minor details of life.
Mattie could sense his time was running short. In an e-mail message to Oprah near the end of his life, he wrote, “My body is trying to die more and more each year, even though my spirit is trying to keep it going even just a little bit longer.” Mattie spent much of his life in and out of hospitals, and as he got older the complications from the disease became more severe. His heart actually stopped beating for 45 minutes early in 2004, before he was finally revived by doctors. In March of that year, Mattie checked into the hospital for the last time. He was in unbearable pain. It was nearly impossible for him to breathe, and his doctors couldn’t expand his lungs any more. According to his mother, he indicated that he was ready to die, but kept asking her if he had done enough. With tears in her eyes, she said, “You are everything God created people to be. You have done everything you came here for. I’ll be okay. I love you.” She was giving her son permission to die. She continued to hold him and kiss him. She said she wanted to give him enough kisses for eternity. A few moments later, Mattie passed away in his mother’s arms.
During his lifetime, Mattie inspired thousands of people and made many friends. An estimated 1,300 people attended his funeral. Close friends and complete strangers alike came to pay their final respects. His two special friends, President Jimmy Carter and Oprah Winfrey, gave moving eulogies. President Carter said, “We [my wife and I] have known kings and queens, and we’ve known presidents and prime ministers, but the most extraordinary person whom I have ever known in my life is Mattie Stepanek.” This was high praise coming from a 79-year- old former president and Nobel Peace Prize winner. Oprah was equally impressed with this young man’s spirit. “I could not believe so much wisdom, so much power, so much grace, so much strength and love could come from one 10-year-old little boy,” she said. Near the end of her eulogy, Oprah added, “I know that his heartsong has left a heart print in my life. A heart print that abides with me even now.”
Through his work with MDA, Mattie had created a special relationship with firefighters. In accordance with his wishes, Mattie’s casket was carried to the cemetery in a bright red fire truck. Over 1,000 fire fighters lined the streets as a special tribute to this little boy with a big heart. He was buried as a fallen firefighter, a rare honor for a child. His name was also added to the Fallen Fire Fighter Wall of Honor. As his body was carried to the cemetery, one of the last images seen by Mattie’s friends and family was a sticker on his casket that read: “Be a peacemaker.”
Mattie Stepanek was one of a kind, no question about it. He packed a lifetime of living into his 13 years. However, there is a piece of him in every one of us. It’s all about attitude! Don’t take life for granted. No one is promised tomorrow, but a positive attitude can change the outcome of today. Each of us has the power to change the way we approach school, work, and family. Instead of complaining about trivial problems, we should spend our time celebrating our accomplishments. Be thankful for what life has given you each and every day. Choose to look for the beauty in all situations and live each day to the fullest. Imagine what this world would be like if we all strived to approach life with Mattie’s optimism and positive attitude.
- “Remember to play after every store,” was one of Mattie’s favorite sayings. What do you think he meant by this?
- Mattie faced many trying times in his life. List at least two things he specifically did to demonstrate a positive attitude in response to those trying times?
- Mattie wanted to be remembered as a “poet, a philosopher who plays and a peacemaker.” How do you want to be remembered?
- What inspires you about Mattie and how can his life inspire you to be a better person?