Facing the Future

Every journey begins
With but a small step.
And every day is a chance
For a new, small step
In the right direction.
Just follow your Heartsong.

On Growing Up

We are growing up
We are many colors of skin
We are many languages
We are many ages and sizes.
We are many countries…
But we are one with the earth.
We each have one heart.
We each have one life
We are growing up, together,
So we must live as one family.

On Being a Champion

A Champion is a winner,
A hero…
Someone who never gives up
Even when the going gets rough.
A champion is a member of
A winning team…
Someone who overcomes challenges
Even when it requires creative solutions.
A champion is an optimist,
A hopeful spirit…
Someone who plays the game,
Even when the game is called life.
There can be a champion in each of us,
If we live as a winner,
If we live as a member of the team,
If we live with a hopeful spirit,
For Life.

All these poems are by MATTIE STEPANEK

MY NAME IS MATTIE

(this short autobiography was submitted to MY HERO by Mattie in 2000.)

My name is Mattie Joseph Thaddeus Stepanek (my real name is Matthew, but I like Mattie). I am almost 11 years old, and I home school doing a high school curriculum. I began writing when I was about 3 years old, and now have a collection that contains thousands of poems, dozens of essays and short stories, and many illustrations. I have even bound some of my books at home, and a bound anthology of my writing was presented to the Library of Congress during the Fall of 2000. I have also won many awards for my writing, including the Melinda A. Lawrence International Book Award in 1999 for ‘most inspirational work.’

I have a rare form of muscular dystrophy called mitochondrial myopathy, and I also have something called dysautonomia. That means that my ‘automatic’ systems, like breathing, heart rate, body temperature, oxygenation, digestion, and things like that don’t always work well on their own.

So, I use extra oxygen all the time, and when I am tired or sleeping I use a ventilator that breathes for me and some other machines, too. I also use a power wheelchair much of the time to save energy and move my medical equipment around. My two brothers and one sister died during childhood from the same thing I have, and my mother uses a power wheelchair all the time because she has the adult form of this disability.

I love to read, write, and do public speaking at conferences and seminars. This year I was chosen to be the Maryland State Goodwill Ambassador for the Muscular Dystrophy Association. I get to participate in many fundraising events that will help find a cure for neuromuscular diseases, and support children and families in celebrating life during the time before a cure is found. I also enjoy playing with Legos, drawing, Pokemon, and studying about famous people and the Martial Arts (I have earned a 1st Degree Black Belt in a Korean art similar to Tae Kwon Do).

When I grow up, I want to be a peacemaker. My biggest role model for this is Jimmy Carter, who has been a wonderful peanut farmer, politician, and peacemaker… I call him the ‘perfect hero.’ I would like to work as a mediator, and share my poetry, essays, and philosophy with others so that they may be inspired to work with other people, too. I want people to know that in every life, there are storms. But we must remember to play after every storm and to celebrate the gift of life as we have it, or else life becomes a task, rather than a gift. We must always listen to the song in our heart, and share that song with others.

Wipe your eyes, and remember this child a hero. On a personal level, my father-in-law suffers from the adult form of this disease as did his mother . The one thing we do know is in the gentic passage of it takes places from a mother to her children. This was not passed on from my father-in-law to his children which was his first concern.

The nurse comes out in me at times and I might share more than you care but you control your eyes.I do know this was a special child and an inspiration to me many times. I might post about him again if no one reads this .