[Congressional Record (Bound Edition), Volume 150 (2004), Part 11]
[House]
[Pages 14208-14210]
[From the U.S. Government Publishing Office, www.gpo.gov]




            EVENTS IN SUDAN AND IN MEMORY OF MATTIE STEPANEK

  The SPEAKER pro tempore. Under a previous order of the House, the 
gentlewoman from Texas (Ms. Jackson-Lee) is recognized for 5 minutes.
  Ms. JACKSON-LEE of Texas. Allow me, Mr. Speaker, to join in with a 
number of my colleagues and as well the Congressional Black Caucus on 
this question of the people in Sudan. I add my appreciation to the 
leadership of the gentleman from New Jersey (Mr. Payne) and the 
gentleman from Virginia (Mr. Wolf) and Senator Brownback on recognizing 
the enormity of the genocide that is occurring in Sudan. I know that if 
the nation of Sudan wants to do better, it can do better.
  Right now we have 400,000 Sudanese being displaced and thousands 
being killed every day. As some of us said this week, we cannot return 
to the Rwanda where we lost millions of lives in the conflict and 
bloodshed of a few years ago. This is genocide, Arab against Black 
Muslim, and it must stop. I would encourage Secretary Kofi Annan, who 
will be heading to Sudan, to give a very strong and very 
noncompromising statement and demand.
  I would likewise encourage and suggest that Secretary Powell must be 
noncompromising and demanding, the immediate cease-fire and disarming 
of the Janjaweed and as well the immediate response, humanitarian 
efforts to be able to go into that area. My understanding is that 
bloodshed continues and whatever the representations have been of the 
government, the bloodshed has not stopped.
  Might I say that those of us who care about people care about all of 
the people in Sudan, but not the violent murderers that have been 
intimidating and frightening and killing innocent people. As I said, 
the Government of Sudan can in fact make changes. The question is to 
them, Do they want to make these changes? The Ambassador has said so, 
and I would like to hear from the government to know that they are 
stopping the bloodshed.
  Mr. Speaker, I want to transition, because my comments are about 
peace and tranquility and the need for such. I would like to transcend 
just for a moment to honor a young man that I did not know, but as 
Chair of the Congressional Children's Caucus I am obligated to 
acknowledge young Mattie Stepanek, a young, 13-year-old poet who 
suffered with muscular dystrophy, a child poet who continued to inspire 
us, whose inspirational verse made him a best-selling writer and a 
prominent voice for muscular dystrophy sufferers. He died Tuesday of a 
rare form of the disease. Interestingly enough, not only did he lose 
his life, but his mother lost children before with the same disease. 
Can you imagine?
  Mattie died at Children's National Medical Center in Washington, the 
hospital said. He had been hospitalized since early March from 
complications related to the disease that impaired most of his body. 
But, Mr. Speaker, it did not impair his mind and his spirit. His poetry 
sold millions of copies. And when I saw his last repeated interview 
with Larry King, I saw him say that he wanted to be a peacemaker, he 
wanted his life to exude what we could do as a human family. He wanted 
this Earth to be full of peace. His mother, Jeni, 44, has the adult 
onset form of the disease and his three oldest siblings had died of the 
same disease in early childhood.
  Mattie 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. He wrote four other books: ``Journey Through 
Heartsongs,'' ``Hope Through Heartsongs,'' ``Celebrate Through 
Heartsongs'' and ``Loving Through Heartsongs.'' He said that if he 
could be the one to change people's minds about war and peace, he 
wanted it to be him. And so as he sat in his wheelchair with a 
breathing tube, no one could stop having their heart go out to him and 
be moved by a child guiding us, adults who are based in conflict and 
who cause wars.
  Here was a child encouraging us to educate the public and plead with 
us whether we would stand for peace over war and life over death. This 
young man who suffered his entire life, you would never know that 
Mattie suffered, for he spoke with eloquence and compassion and spirit, 
and he just drew you to him. Mattie was 13 years old, but he could say 
to those far beyond his years in wisdom and in age, he could tell them 
that they were loved and that there was another place and that he 
believed in peace.
  One of his songs says, ``Have you witnessed the early morning, right 
before

[[Page 14209]]

the sun rises and the sky glows purple lava lamp? The clouds are the 
dark, floating lumps, and the still, gentle Earth is to look upon.'' He 
called it ``Rapture.'' He then had one called ``Hope'': ``Gentle and 
peaceful. We are the children of one God yet so many faiths. True, we 
are different. Unique mosaics of life. Still, we are the same. United 
we are the festive fabric of life. Divided we fall.''
  Mr. Speaker, I would say to you that if we listen for just a moment 
to that fleeting voice of this young man who now I know lives above us 
in heaven, we would understand the sweetness of a tranquil peace and to 
recognize that as conflicts abound in Afghanistan and Iraq and as this 
world looks to America and its future, maybe, Mr. Speaker, we will be 
allowed to take a brief message from Mattie and regain our moral high 
ground, the Nation who defends and not offends, the Nation who stands 
for the morality of peace.
  I salute Mattie Stepanek and to his loving mother who has lost four 
of her children, I pray for them, I pray for his soul. God bless him. 
God bless America.
  Mattie Stepanek, the 13-year-old 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.
  Mattie died at Children's National Medical Center in Washington, 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 Mattie Stepanek wrote five volumes of 
poetry that sold millions of copies. Three of the volumes reached the 
New York Times' best-seller list.
  Mattie 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.
  Mattie 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.
  He wrote four other books: ``Journey Through Heartsongs,'' ``Hope 
Through Heartsongs,'' ``Celebrate Through Heart-
songs,'' and ``Loving Through Heart-
songs.''
  His poems brought him admirers including Oprah Winfrey and former 
President Carter and made him one of the best-selling poets in recent 
years.
  Mattie 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.
  Despite his condition, Mattie 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.''
  I also want to use this time to speak about the Ad Council's new 
public opinion survey, entitled, ``Turning Point: Engaging the Public 
on Behalf of Children.'' This report concludes what many of us in the 
Congressional Children's Caucus have known for some time: we need to 
effectively communicate to the public about helping kids. ``Turning 
Point'' indicates that the public is willing to listen and the children 
need our help more than ever.
  I have spoken with the Ad Council, and their panel of experts which 
included Warren Kornblum, Chief Marketing Officer, Toys 'R' Us, Gary 
Knell, President and CEO, Sesame Workshop, and Paul Kurnit, Founder & 
President, KidShop. Based on their research and interviews, the report 
concludes that the public has a more positive view of children and the 
majority of Americans believe that parents are responsible for raising 
children with the support of their community. Instead of focusing on 
blame, we are going to focus on a solution.
  There are a myriad of challenges facing our children, and we must 
work to make children a top legislative priority or it will be a 
constant struggle to address them. In my State of Texas, 120,370 
children were reported as abused or neglected and referred for 
investigation in the year 2001. This is a rate of 20 per every 1000 
Texan children. Even more troubling, 206 children died as a result of 
abuse or neglect in Texas in 2001.
  As Chair of the Congressional Children's Caucus, I am always 
appreciative of ways to put the needs of children at the forefront of 
our legislative agenda. The Ad Council has provided us communication 
and message tools. We in Congress can use these to convey that children 
are indeed a high priority.
  Educating the public about children is not something we can leave 
alone, in hopes of it occurring by itself. I hope that many of you here 
can take these communication tools back to your offices, your districts 
and your own homes.

          Mattie Stepanek's Poems (as Read on Larry King Live)


                               heartsong

     And a heartsong is your inner message, it's your inner 
           beauty, like what you are meant to do in life. My 
           heartsong is to help others hear theirs again.

     And all heartsongs are different and unique and beautiful. 
           And even though similarities are good, it's the 
           differences that make them special. And we should never 
           try to force our heartsongs on others or have all the 
           same heartsongs.

     And it's sad that people are fighting over whose heartsong is 
           better nowadays, because they're all different and 
           beautiful.


                                rapture

     Have you witnessed the early morning, right before the sun 
           rises and the sky glows purple lava lamp? The clouds 
           are the dark, floating lumps, and the still, gentle 
           earth is to look upon.


                               hope haiku

     Gentle and peaceful. We are the children of one God yet so 
           many faiths. True, we are different. Unique mosaics of 
           life. Still, we are the same. United we are the festive 
           fabric of life. Divided we fall.


                          resolution invocation

     Let this truly be the celebration of a new year. Let us 
           remember the past, yet not dwell in it. Let us fully 
           use the present, yet not waste it. Let us life for the 
           future, yet not count on it. Let this truly be the 
           celebration of a new year, as we remember and 
           appreciate and live, rejoicing with each other.


                              about heaven

     Now I will tell you about heaven. Where is heaven? It is way 
           over there. And it is way over there. And it is way 
           over there, too. It is everywhere. What does it look 
           like? It looks like a school. And it looks like a farm. 
           And it looks like a home. It looks like everything. 
           What does it sound like? Well, I really don't know, 
           because I'm just a little big boy with a brother and 
           another brother and sister and a friend who live in the 
           everywhere and everything of heaven. But perhaps heaven 
           sounds like forever.


                                  i am

     I am black. I am white. I am all skins in between. I am 
           young. I am old. I am each age that has been. I am 
           scrawny. I am well fed. I am starving for attention. I 
           am famous. I am cryptic. I am hardly worth the mention. 
           I am short. I am height. I am any frame or stature. I 
           am smart. I am challenged. I am striving for a future. 
           I am able. I am weak. I am some strength. I am none. I 
           am being. I am thoughts. I am all things, said and 
           done. I am born. I am dying. I am dust of humble roots. 
           I am grace. I am pain. I am labor of willed fruits. I 
           am a slave. I am free. I am bonded to my life. I am 
           rich. I am poor. I am wealth amid strife. I am shadow. 
           I am glory. I am hiding from my shame. I am hero. I am 
           loser. I am yearning for a name. I am empty. I am 
           proud. I am seeking my tomorrow. I am growing. I am 
           fading. I am hope amid the sorrow. I am certain. I am 
           doubtful. I am desperate for solutions. I am leader. I 
           am student. I am fate and evolutions. I am spirit. I am 
           voice. I am memory not recalled. I am chance. I am 
           cause. I am effort, blocks and walls. I am him. I am 
           her. I am reasons without rhymes. I am past. I am 
           nearing. I am present in all times. I am many. I am no 
           one. I am seasoned by each being. I am me. I am you. I 
           am all souls now decreeing: I am.
                                 ______
                                 

                       Mattie Stepanek Background

       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.
       Mattie died at Children's National Medical Center in 
     Washington, 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.''
       Mattie had dysautonomic mitrochondrial myopathy, a genetic 
     disease that impaired

[[Page 14210]]

     his heart rate, breathing, blood pressure and digestion, and 
     cuased 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.
       Mattie 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.
       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.
       Mattie 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, Mattie 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.
       Mattie 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.
       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.
       Despite his condition, Mattie 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.''

                          ____________________