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#82620 - 06/22/04 11:55 PM Perspective
Don-NY Offline
Member
MaleSurvivor

Registered: 08/06/02
Posts: 546
Loc: Long Island, NY
This is an obituary as well as a few poems from Mattie Stepanek.

You might have heard of him. He's had 3 books of poetry on the NY Times bestsellers list in the past few years.

He died today, at age 13, after a life-long battle with a rare form of Muscular Dystrophy.


Here are some of his works. Look at the dates. He was born in 1990.

Quote:
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,
And their spirits,
About their future.
I will help them
Hear their 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 in Earth.

November 1999
Matthew Joseph Thaddeus Stepanek
Quote:
Swinging

So high. . .
Wind tickles my tummy
Plays with my feet
Gives my hair a ride.
So high. . .
Grab a leaf from a tree
Reach a so-far-up branch
See over the edge of my earth.
So high. . .
Meditate on being
Touch all my thoughts
Think about friends
And families and
Brothers and sisters.
So high. . .
Leave this world for a bit
Jump into Heaven for a moment
Then, swing back into my life again.
So high. . .


Mattie - 8/1/98
Hyperion. All Rights Reserved.

Quote:
Created Bonds

Just like real family,
Kin help us to live
Our lives peacefully.
And we help them to live
Peacefully in return,
Because we are
Family and kin, together.
It is good to have family.
It is even better to have kinship
Within and beyond family.
For it is not blood
That creates a bond...
It is the unique
Relationship of mutual
Goals and love, and
Our celebration of life.

Mattie - 5/8/00
Hyperion. All Rights Reserved.


Quote:
a-byss'

My life
Is halfway down
An abyss.
A deep
Immeasurable space.
A gulf.
A cavity.
A vast chasm.
My life
Is not how
I planned it to be.
Is not how
I want it to be.
Is not how
I pray for it
To be.
In the darkness
Of this pit,
I see a small
Light of hope.
Is it possible for me
To climb to such heights?
To rebuild the bridges?
To find my salvation?
The song
In my heart
Is so quiet.
Is so dark.
Is so fearful.
I dare not stay in
This abyss.
Though deep
And vast,
I am only halfway
Down.
Thus, I am
Already
Halfway up?
Let such words
Fall onto my heart,
And raise me from this depth.

Mattie - 1/6/01
Hyperion. All Rights Reserved.

Quote:
Future Reminiscing

It is good
To have a past
That is pleasant
To reflect upon.
Take care
To create
Such a gift
For your future.

Mattie - 12/25/00
Hyperion. All Rights Reserved.

Quote:

Mattie Stepanek, poet, advocate, dies

By STEPHEN MANNING
ASSOCIATED PRESS WRITER


Matthew (Mattie) J.T. Stepanek, died Tuesday, June 22, 2004, in Washington due to complications from his rare neuromuscular disease. Jeni Stepanek also has the disease, which claimed the lives of three of Mattie's siblings.


ANNAPOLIS, Md. -- Mattie Stepanek, the child poet whose inspirational verse made him a best-selling writer and a prominent voice for muscular dystrophy sufferers, died Tuesday of a rare form of the disease. He was 13.

Stepanek died at Children's National Medical Center in Washington, D.C., the hospital said. He had been hospitalized since early March for complications related to the disease that impaired most of his body's functions.

In his short life, the tireless Stepanek wrote five volumes of poetry that sold millions of copies. Three of the volumes reached the New York Times' best-seller list.

"Mattie was something special, something very special," entertainer Jerry Lewis, who chairs the Muscular Dystrophy Association, said in a statement. "His example made people want to reach for the best within themselves."

Stepanek, of Rockville, had dysautonomic mitochondrial myopathy, a genetic disease that impaired his heart rate, breathing, blood pressure and digestion, and caused muscle weakness.

His mother, Jeni, 44, has the adult-onset form of the disease, and his three older siblings died of it in early childhood.

Stepanek began writing poetry at age 3 to cope with the death of a brother. In 2001, a small publisher issued a slim volume of his poems, called "Heartsongs." Within weeks, the book reached the top of the Times' best-seller list, the MDA said.

He wrote four other books: "Journey Through Heartsongs," "Hope Through Heartsongs," "Celebrate Through Heartsongs" and "Loving Through Heartsongs."



His poems brought him admirers including Oprah Winfrey and former President Carter and made him one of the best-selling poets in recent years.

Stepanek was hospitalized many times over the years. He rolled around his home in a wheelchair he nicknamed "Slick," and relied on a feeding tube, a ventilator and frequent blood transfusions to stay alive.

In the summer of 2001, Stepanek nearly died from uncontrollable bleeding in his throat and spent five months at Children's National. When it seemed he would not survive, the hospital got in touch with a Virginia publisher on his behalf.

Stepanek and his mother had sent the book to dozens of New York publishers, all of whom rejected it, according to Peter Barnes of VSP Publishers. Barnes said he was caught off guard when he read the work.

"I was stunned. Some of it was really good," he said Tuesday. "It was very perceptive and thoughtful."

VSP Books printed 200 copies of "Heartsongs" to be handed out to friends. But after a news conference publicizing the book, interest exploded. "Heartsongs" went on to sell more than 500,000 copies.

"Mattie rallied after that," Barnes said. "He went from being on his death bed to becoming this huge publishing success."

Despite his condition, Stepanek was upbeat, saying he didn't fear death. His work was full of life, a quest for peace, hope and the inner voice he called a "heartsong."

"It's our inner beauty, our message, the songs in our hearts," he said in an interview with The Associated Press in November 2001. "My life mission is to spread peace to the world."

He is survived by his mother.


_________________________
If you understand everything, some things are just as they are. If you understand nothing, things are still just as they are.

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#82621 - 06/23/04 01:13 AM Re: Perspective
yesac76 Offline
Member
MaleSurvivor

Registered: 03/23/04
Posts: 508
Loc: Idaho
This saddens me a great deal. It breaks my heart when children suffer and die from cancer and other diseases

_________________________
"You live it or lie it" Metallica

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#82622 - 06/23/04 02:28 AM Re: Perspective
Ivanhoe Offline
Member
MaleSurvivor

Registered: 03/19/03
Posts: 1907
Don,

Thank you for bringing this to our attention.
Such a courageous boy; it reminds me of the courageous boys and men, here.

David

_________________________
"No soul is desolate as long as there is a human being for whom it can feel trust and reverence."
George Eliot

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#82623 - 06/24/04 12:34 AM Re: Perspective
Don-NY Offline
Member
MaleSurvivor

Registered: 08/06/02
Posts: 546
Loc: Long Island, NY
casey,

I'm sorry this made you sad. That's not what I wanted to do, by any means.

I was just amazed at his poetry, especially since he was so young when he wrote it.

I was thinking that these were survivor poems but when I read about his life, I felt that this person was beyond victim and beyond survivor.

He was in a place I aspire to, mentally and emotionally, and I felt very humbled.

I find his words very comforting, and very, very wise.

"Created Bonds"- that poem is all about us, about MaleSurvivor.

And "Future Reminiscing" is a fantastic reminder, and even though Leosha said the same thing here a while ago, Mattie said it when he was ten.

The most amazing thought is there in "a-byss'".

Quote:
I dare not stay in
This abyss.
Though deep
And vast,
I am only halfway
Down.
Thus, I am
Already
Halfway up?
I've tried to explain this before. That change of perspective that gets you looking up rather than down, or ahead rather than backward.

I once wrote about stopping running from the daylight and letting it overtake me, but that didn't quite express it.

Those words above do. I may be halfway to Hell, but that means I'm already halfway back!

I've tried to talk about spirals. How we forget that spirals go UP as well as down, or how some spirals aren't going up or down, they're just leading us in circles. But we forget the circles are getting wider and wider and while it may seem like we are returning to a bad place, or walking backwards, we are still further away from that dark center with each pass.

But I never got it quite right. He did, in just a few words... "Thus I am already halfway up"

That's what I wanted to share.


Yes, it's sad that he suffered and his life was so short, but he is an inspiration to me, and I think, I hope, to millions of others.


Donald

_________________________
If you understand everything, some things are just as they are. If you understand nothing, things are still just as they are.

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#82624 - 07/04/04 08:07 AM Re: Perspective
Malidin41 Offline
Member

Registered: 07/01/04
Posts: 140
Loc: Utah
Mattie was a great person and wrote many wonderful poems, he will be missed by many. I am just extreamly greatful to know that he is in a much better place without any pain, running and playing with his brothers and sister. Mattie had accomplished so much and lived as we all should with love and a great desire to help others. He truly lived. I have not read many of his poems but I have gotten to know some of his poetry through a CD that was realeased called music through heartsongs by billy gilman, All of the songs on the album are based on matties poetry and let me tell you the CD is absolutly wonderful. If you have not heard it please go out and get it, it has helped me so much and Im sure it will do the same for you. Thankyou for making this post it is nice to see that people are remembering him and all that he has done.

_________________________
Mother of the kingdom of silence I have obeyed you long enough!!!

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