The bell tolled for Matthew Joseph Thaddeus Stepanek 13 years ago. He just didn't listen.
Born with a rare and lethal strain of muscular dystrophy that is 33 letters long, Mattie was not expected to live more than a day. A sister and two brothers died from the same disease, and his mother had contracted an adult form that confined her to a wheelchair. His father ran off, never to return. After a month, Mattie was considered a living miracle. Baffled doctors then said maybe two years, no more. Then Five. Ten. What did this kid have in his life to keep him going, anyway?
Despite muscle weakness that bound him to his wheelchair, made medical equipment a permanent appendage, and impaired all of his major body functions, he lived. In fact, Mattie did more in his short lifetime than most of us do with our three-score-and-ten. Thirteen may be unlucky to some, but for Mattie every day was a winner.
At age three he began to write poetry, to help him deal with the death of his siblings:
"Our eyes are for looking at things, but they're also for crying when we are very happy or very sad. Our ears are for listening, but so are our hearts. Our noses are for smelling food, but also the wind and the grass, and if we try very hard, butterflies. Our hands are for feeling, but also for hugging and touching so gently. Our mouths and tongues for tasting, but also for saying words like I love you and thank you God for all of these things".
Mattie wrote. And he prayed. Not just for himself, because he was already at peace with his existence. He knew he was going to heaven, to see his brothers and sister, and he was prepared. He prayed, and wrote, for others, that they could see all of the good in the world. Just as he saw it.
"I hope they can learn to appreciate life and themselves. They can learn peace, how to have it within themselves and others and within the world. And how to understand nature, challenges, how to jump hurdles, never give up hope."
And he dreamed. Dreamed about having his writing published, so others could feel the love. What he called his "Heartsongs". He and his mother collected the poetry, which he illustrated, and sent it to dozens of New York publishers, all of whom rejected it.
He lived his life in and out of hospitals, kept alive by a feeding tube, ventilator, and regular blood transfusions. Finally, in 2001, Mattie suffered through five months of uncontrollable bleeding in his throat. Death seemed imminent, and the Make A Wish Foundation carried out his lifelong dream. They sent some of his poetry and drawings to a small private publisher.
"The trees are singing tonight, listen. Listen and hear, they are singing a song of happiness and joy. They are singing a song of peace and thought."
"I was stunned," said Peter Barnes of VSP Publishers . "Some of it was really good. It was very perceptive and thoughtful." VSP printed 200 copies of "Heartsongs" for Mattie to give to his friends. But after some publicity by the Muscular Dystrophy Association, "Heartsongs" sold more than 500,000 copies, and in a matter of weeks reached the top of The New York Times bestseller list.
More important, as sales soared, so did Mattie's health. The bleeding stopped, he went home. And found himself a celebrity. He appeared on "The Oprah Winfrey Show," "Good Morning America," "Larry King Live," "Today," "CBS Early Show" and C-SPAN's "Book TV."
He wrote four more books: "Journey Through Heartsongs," "Hope Through Heartsongs," "Celebrate Through Heartsongs" and "Loving Through Heartsongs." Inspiring, upbeat, celebratory prose, by a young man who had outwardly suffered nothing but tragedy in his life. Each volume has been a bestseller. Millions of copies have been sold.
If I take time and listen very hard,
I can still hear my Heartsong.
It makes me feel happy.
Happier than ever.
Happier than everywhere
And everything and everyone
In the whole wide world
Happy like thinking about
Going to Heaven when I die.
My Heartsong sounds lik this:
I love you! I love you!
How happy you can be!
How happy you can make
The whole world be !
Mattie home-schooled at 10th and 11th grade levels. He also attended a local community college part-time, and earned a junior black belt in martial arts. In a wheelchair. With a throat tube and ventilator. The U.S. Department of Health & Human Services recognized him for his humanitarian work . He was awarded The Children's Hope Medal of Honor, and declared an honorary United States Senator. He was collaborating with his idol, President Jimmy Carter, on a book about peacemaking.
"It's our inner beauty, our message, the songs in our hearts. My life mission is to spread peace to the world."
He became only the second youngster to serve three terms as the Muscular Dystrophy Association poster child, and the first to do so in almost 40 years. In an incredibly touching moment, Jerry Lewis closed his telethon by singing "You'll Never Walk Alone," directly to Mattie. The first and only time Jerry has so honored one of "his kids".
On June 22, Mattie couldn't ignore the bells any longer. He died in his sleep, with his mother at his side, and holding a picture of the one brother he had known. Matthew Joseph Thaddeus Stepanek finally was united with his siblings, and entered the peace that he tried so hard to bring to others.
"Everyone in the whole wide world
Has a special Heartsong.
If you believe in magical, musical hearts,
And if you believe you can be happy,
Then you, too, will hear your song."