Meeting Mattie Stepanek

Meeting Mattie Stepanek
Oprah.com | October 19, 2001
From the moment she heard his story, Oprah has
wanted to meet 11-year-old Mattie Stepanek. Mattie
was born with a rare form of muscular dystrophy.
To get around, he needs a wheelchair and oxygen.
Yet Mattie has never let his disease keep him
down: He earned a junior black belt in martial arts
while tethered to an oxygen tank; and despite being
just 11 years old, he home-schools at the level of a
high school junior.
But Mattie's real gift is for poetry. "I write to express
my thoughts, my feelings," he says. "I want people
to think."
Mattie has three wishes in his life. "One, to have my
book published so I can spread my message of
peace through the world. Two, to talk peace with my
hero, Jimmy Carter," Mattie says. "And [three], to meet
with Oprah Winfrey."
Mattie got his first wish when two books of his poetry,
Heartsongs and Journey Through Heartsongs, where
published earlier this year. His second wish came
true when he had a phone conversation with
President Carter. "I was so excited," Mattie says. "I
couldn't believe it."
A recent health scare left Mattie close to death, but today, his third wish is coming true!
Mattie says some adults tried to get him to give up his three wishes in favor of other dreams, but he stayed
true. "Going to Disney World ends in a week; having a shopping spree ends in a day," he says. "But being able
to talk to Jimmy Carter, being able to have my book published, being able to talk to you today, lasts forever,"
Mattie tells Oprah.
Mattie has been a poet since the age of 3. He says he would go up to his mother, Jeni, and ask her to type his
work on the family's computer. "I'd go, 'Mommy can you write something down for me please?' And she would
say, 'Sure,'" he says. "I would tell her these poems, and she would type them down for me."
With those first writings, Mattie didn't even know that
he was writing poetry. "I was just expressing my
feelings. I was just saying what I felt like I needed to
say." Today, Mattie writes his poetry by himself on his
computer.
Mattie's poetry is full of what he calls "heartsongs."
"A heartsong doesn't have to be a song in your heart.
It doesn't have to be talking about love and peace. It
can just be your message. It can be your feeling," he
says. "Some people might even call it a conscience,
even though that's not really what it is. It's your
message, what you feel like you need to do."
Everyone has a heartsong, Mattie says. "No matter
what it is, it still sings the same beautiful message of
peace and love. People are fighting over how our
heartsongs are different. But they don't need to be the same," Mattie says. "That's the beauty. We are a mosaic
of gifts. Each of us has our inner beauty no matter how we look."
Once, as he lay in a hospital bed near death, Mattie
says he saw angels coming for him. "It was beauty
beyond imagination and description. When I woke
up, the first thing I said was, 'Don't believe in the
Christmas trees, the angels are so much more
beautiful than that.'"
This is Mattie's poem, "When I Die":
When I die, I want to be
A child in Heaven.
I want to be
A ten-year-old cherub.
I want to be
A hero in Heaven,
And a peacemaker,
Just like my goal on earth.
I will ask God if I can
Help the people in purgatory.
I will help them think,
About their life,
About their spirits,
About their future.
I will help them
Hear their own Heartsongs again,
So they can finally
See the face of God,
So soon.
When I die,
I want to be,
Just like I want to be
Here on earth.
Mattie's mother, Jeni, has the same disease he
does, but she didn't know she had it until after she
had given birth to Mattie and his three siblings.
"I was very tired and in a lot of pain but assumed that
was the stress of having such sick children," Jeni
says. "When I was diagnosed with the adult version
of muscular dystrophy, which is more muscle
impairment, they went back and checked the
children. Two of them had already died, but Mattie
and his brother Jamie were still alive. They were
diagnosed with the infant-onset [version], which is
neurologically devastating and always—except for in [Mattie's] case—fatal during early childhood."
Mattie's sister, Katie, died at 2 years old; his brother Stevie died at 6 months; and his brother Jamie died at 4
years old.
Mattie says three things keep him going. "Expressing my feelings and then the opportunity to share it with
others is just such a gift," he says. "Another thing is how people help me through it, like my mom, my friends,
my dreams. And another very important factor of why I'm here today talking to you is prayer."
Despite all that has happened to Mattie, he says he
still sees miracles in his life every day. "Even if the
only thing that happens is my home-schoolwork, it's
a miracle that I get to do that because I couldn't do it if
I was in heaven," Mattie says. "In a way that's good,
but in another way that's bad."
Poetry isn't Mattie's only creative hobby. He's also an
avid rock collector, with rocks from all over the world
including ones from Ireland, a German castle and a
piece of the Berlin Wall. His latest addition to the
collection is a rock he picked up just the other day in
Chicago!
Oprah has a few more new rocks for Mattie to add to his collection: rocks inscribed with the words "Peace,"
"Wish," "Mattie," "Oprah" and "Heartsongs."
Sadly, Mattie died on June 22, 2004, but his positive impact on the world lives on.
Remembering Mattie
Watch a video tribute to Mattie