22 June 2004, Gate of Heaven Cemetery, Silver Spring, Maryland, USA
Mattie Stepanek was a sufferer of MDA who died at just thirteen years of age. He wrote poetry and was a peace ambassador. His three older siblings died from dysautonomic mitochondrial myopathy, too. His mother was only diagnosed with mitochondrial disease after her four children were born.
When I was running for governor a number of years ago, my wife and I didn’t have much money so we traveled around the state and we estimated later that we shook hands personally with 600,000 people.
Later I ran for president, as some of you may remember, and campaigned in all 50 states. Subsequently, I traveled around the world. In fact, since I left the White House, my wife and I have been to more than 120 nations. And we have known kings and queens, and we’ve known presidents and prime ministers, but the most extraordinary person whom I have ever known in my life is Mattie Stepanek.
I didn’t know Mattie until about three years ago when Make-A-Wish Foundation sent me a letter and said there was a little boy who only had a few more days to live and his final request was to meet Jimmy Carter. I was surprised and honored and within a few days, as a matter of fact, the Good Morning America program arranged for Mattie to be interviewed and for me to come there as a surprise to meet with him. He later told his mother, Jeni, that when I walked in the room he thought it was a presidential impersonator. And later, when it proved to be me, he told Jeni, and Jeni told me, that that was the first time in his life, and maybe the only time, when Mattie was speechless. But we exchanged greetings and formed, I would say, an instantaneous bond of love.
The next morning back home, Mattie woke up and he told Jeni what a wonderful time he had had. He had been dreaming, but he was so proud that he had met Jimmy Carter. And Jeni, often teasing Mattie, said, “Mattie, you must have been dreaming. You haven’t actually met Jimmy Carter,” and Mattie burst into tears and Jeni very quickly reassured him that we had actually had a personal meeting.
That meeting and our subsequent relationship have literally changed my life for the better. Mattie said that day that I had been his hero for a long time and I was sure that he was just joking and he could tell on the ABC program that I didn’t really quite believe him. And so to prove that, he sent me a video, a 20-minute-long video that he had made when he was 6-years-old, explaining the life of Jimmy Carter. And for the different segments in the video, he dressed appropriately.
So, it started out I was a little farm boy and Mattie had on ragged clothes and he spoke with what Rose (Rosalynn) and I thought was an atrocious Southern accent. And then later I was a naval officer and then later I came back to be a farmer and then ultimately was president, so he changed clothes every time. And then while I was president, he gave an appeal to human rights and peace and things of that kind and while the camera was on him, he realized later, his toes kept wiggling, he was barefoot, so for a long time he apologized to me that he should have done that segment over and at least put on shoes to be president.
He sent me another video, which I would like for all of you to try to see. It’s a video of his competition as a black belt in martial arts for the ultimate prize in that intense and demanding sport. It was incredible to see the agility of that young boy and the strength in his body.
Mattie and I began to correspond. After his death, Jeni gave me the honor of letting me come and do this speech. I had my secretary get out our correspondence. It’s that thick, on every possible subject. He was always in some degree of anguish, and I think embarrassment, when his books on the New York Times list were always above mine. And he would sympathize with me and say, “Well, you know maybe poetry just has less competition than what you are writing about.” But he was very sensitive to my feelings. We also were close enough for Mattie to share some of his problems with me in his private messages. He talked about when he and Jeni were not well off and some local churches, I’m sure not the one represented here this morning, would take up a food collection and send it to them. Mattie used to examine the labels on the food and quite often he said he would find that the date had expired and that people were giving poor people inferior food that they didn’t want to use themselves. And Mattie said, “If my books make a lot of money, we’re going to get food that’s brand new and make sure that poor people get the best food, even if we have to eat the old, outdated food in our house.”
He was very proud of the fact that he and his mother could move into a place that had windows.
I’ve thought a lot about Mattie’s religious faith. It’s all-encompassing, to include all human beings who believe in peace and justice and humility and service and compassion and love. The exact characteristics of our Savior Jesus Christ. He was still a boy, although he had the mind and the consciousness and the awareness of global affairs of a mature, philosophical adult.
One of his prime goals in life was to see the movie “Return of the King” seven times and I hope he was able to accomplish his goal. I’m not quite sure. But that was the kind of thing that he had as his ambitions.
He was as proud as I was when I won the Nobel Peace Prize, which has already been mentioned. As soon as the ceremony was over at the hall in Oslo, I went by myself to the top of a little hill right behind the place and I found a rock and I inscribed on it and I sent it to Mattie, because I felt that he shared the honor that I had received.
The last few days, I have been re-reading some of Mattie’s statements that he wrote to me, I’ve re-read the correspondence. One thing he said was, “I choose to live until death, not spend the time dying until death occurs.”
Jeni told me about one occasion when Mattie was supposed to be a main part of the program which he helped prepare to raise funds for muscular dystrophy, but when the time approached he was in the intensive care unit. They announced at first that Mattie could not attend the event that meant so much to him, in which he had helped in its preparation. He insisted on coming. When he got there and began to say his lines, he announced, “I’m out of breath. I can’t speak.” Mattie loved to dress up and to wear fancy clothes and his favorite kind of clothes, as some of you may surmise, was a tuxedo. So Jeni and Mattie arranged for him to put on a tuxedo and he said, “When I have a tuxedo on, I can talk.” So he went back with his tuxedo.
Mattie said he wanted to be, as an ultimate goal in his life, an ambassador of humanity and a daddy. Mattie had already named his first seven children and had even given personal idiosyncrasies and characteristics to the first four. He wanted to leave a human legacy and family descendants, but Mattie’s legacy, obviously, is much greater than that.
As has already been quoted, he said, “I want to be a poet, a peacemaker and a philosopher who played.” Mattie was deeply aware of international affairs and shared a lot of his thoughts with me. He was once again in the intensive care unit when the war in Iraq began and Mattie burst into uncontrollable sobs of grief and anger. Jeni said he had never cried nearly so much about his own health or his own problems.
He wrote me right after that and I will quote exactly what he said: “Dear Jimmy, I am hurting about the war and I cried last night when I saw the attack on Iraq. I am not trying to be disrespectful, but I feel like President Bush made a decision long ago that he was going to have this war. Imagine if he had spent as much time and energy considering the possibility of peace as he has convincing others of the inevitability of war. We’d be at a different point in history today.”
Mattie was obviously extremely idealistic, but not completely idealistic. He also wrote me in a subsequent letter, “I know that I should be peaceful with everyone, but it’s also not smart,” he said, “to put yourself in a dangerous situation. Like even though I would want to talk to Osama bin Laden about peace in the future, I wouldn’t want to be alone with him in his cave.” In the same letter he asked me if I would join him not just in that meeting, but in writing a book that Mattie wanted to call, and had already named, “Just Peace.”
In an incredible way for a child his age, he analyzed the semantics of the word “just.” The title was “Just Peace” and he said “just” had so many connotations that he thought that was the best word to put before “peace.” He said “just” could be a minimal expectation, just peace, nothing else. It could mean just peace and peace as a paramount commitment, above everything else. And it could mean a peace that was exemplified by justice.
I spent seven years earlier in my life writing a book of poems about which Mattie was graciously complimentary. Poetry seemed to flow out of Mattie, kind of like an automatic stream, directed by inspiration through Mattie’s hands for the enjoyment of hundreds of thousands, maybe millions of people. I want to read just a few of them with which many of you are familiar, because he combined humor with serious thoughts. All of them I would say are unique, surprising when you read them.
One of them is titled “About Angels” and he honored me by letting me write the foreword to this book, called “Journey Through Heartsongs.”
Do you know what angels wear?
Angel-halos and Angel-wings, and
Angel-dresses and Angel-shirts under them, and
Angel-underwear and Angel-shoes and Angel-socks, and
On their heads
Except if they don’t have any hair.
Some children and grownups
Don’t have any hair because they
Have to take medicine that makes it fall out.
The medicine makes them all better.
The medicine doesn’t make them all better,
And they die.
And they don’t have any Angel-hair.
So do you know what God does then?
He gives them an
And that’s what Angels wear.
I like them all, but there’s another I would like to read.
For a long time,
I have wondered about
How You will meet me
When I die and come to
Live with You in Heaven.
I know You reach out
Your hand to welcome
Your people into Your home,
But I never knew if You
Reached out Your right hand,
Or if You
Reached out Your left hand.
But now I don’t have to
Wonder about that anymore.
I asked my mommy and
She told me that You
Reach out both of Your hands,
And welcome us with
A great big giant hug.
I can’t wait for my hug, God.
And another one that he wrote:
I Could…If They Would
If they would find a cure when I’m a kid…
I could ride a bike and sail on rollerblades, and
I could go on really long nature hikes.
If they would find a cure when I’m a teenager…
I could earn my license and drive a car, and
I could dance every dance at my senior prom.
If they would find a cure when I’m a young adult…
I could travel around the world and teach peace, and
I could marry and have children of my own.
If they would find a cure when I’m grown old…
I could visit exotic places and appreciate culture, and
I could proudly share pictures of my grandchildren.
If they would find a cure when I’m alive…
I could live each day without pain and machines, and
I could celebrate the biggest thank you of life ever.
If they would find a cure when I’m buried into Heaven…
I could still celebrate with my brothers and sister there, and
I could still be happy knowing that I was part of the effort.
And the last poem I will read is titled:
When I Die (Part II)
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,
When I die,
I want to be,
Just like I want to be
Here on earth.
Well, it’s hard to know anyone who has suffered more than Mattie. Sandy sent us almost daily reports about his bleeding, internally and from his fingers. I doubt that anyone in this great auditorium has ever suffered so much except his mother Jeni, and our Savior Jesus Christ, who is also here with us today. I always saw the dichotomy between Mattie as a child and with the characteristics and intelligence and awareness of an adult. Just as we see the dichotomy of Jesus Christ who was fully a human being at the same time as truly God.
I would say that my final assessment is that Mattie was an angel. Someone said that to him once and he said, “No, no.” He was very modest. But really in the New Testament language, angel and messenger are the same and there’s no doubt that Mattie was an angel of God, a messenger of God.
He was concerned about his legacy, wanting to have seven children and talking about his grandchildren, but Mattie’s legacy is forever because his Heartsongs will resonate in the hearts of people forever. I thank God that he is no longer suffering and that he’s with the Prince of Peace, getting big hugs in Heaven and maybe wearing a tuxedo.