Jeni Stepanek - Messenger: The Legacy of Mattie J. T. Stepanek and Heartsongs

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Table of Contents

For Sandy Newcomb

Matties VFABF

Very Favorite Adult Best Friend

Maya Angelou and Mattie, April 2002

Foreword

by Dr. Maya Angelou

There is an old African American gospel song which asks the Creator directly, Lord, dont move your mountain, just give me strength to climb it. You dont have to move that stumbling block, just lead me, Lord, around it.

In essence that was the theme of Mattie Stepaneks life. That person, young in years, small in stature and challenged physically, dared to say of lifeHowever you press me, and pain me, and dare me, I shall live you fully. I shall find peace in the storm of disease. I shall find joy in the heart of pain. My name is Mattie Stepanek and I shall be an ambassador of love.

This young poet asked to speak to me, and at first I was simply pleased. As I came to know him, his life, his mother and his poetry, I was honored to be a person who had encouraged and inspired him. Mattie Stepanek did not come from the ground like grass, he grew like a tree. He had roots.

Jeni Stepanek, who has seen all of her children succumb to the ruthless disease and watched her son, the poet, fight valiantly for each day of his life, for each ray of sunshine, and has, herself, been assailed by the same illness, is a root. She is planted deep in the earth. She has given strength to all her children, nurture and admiration to her son, the poet, and now she has given us this book, Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs.

I commend Jeni Stepanek for daring to live, for daring to give, and above all for daring to love.

Prologue

International Association of Fire Fighters honoring Mattie at his funeral, June 28, 2004

... I will revolve seasonally
When my death comes,
And children will remember
And share their Heartsongs,
Celebrating the gifts in the circle of life.

A jar of jawbreakers, a crucifix, a SpongeBob pillow, a copy of To Kill a Mockingbird, the noisy half of a remote control fart machine. These were among the items Mattie had with him in his casket.

We had begun discussing what he would take nearly a year and a half earlier, in February of 2003. Mattie was in the Intensive Care Unit of Childrens National Medical Center in Washington, DC, clearly having crossed the line from being a child with a life-threatening condition to a child whos going to die, probably sooner rather than later.

I was about to open the game box with the Yahtzee dice and UNO cards when he looked straight at me and asked, Mom, do you think people are going to come to my funeral?

He was finding it difficult to breathe. In this latest health crisis, his airway had eroded; at times he felt like he was suffocating. His fingers bled, he coughed up blood and tissue from his tracheal lining, and a tracheostomy tube came out of the hole in his neckventilator and oxygen line attached.

Mattie had had life-threatening episodes before, but I had avoided having direct conversations with him about his death up until that point. You know, he continued, Im going to be young when I die, and maybe people wont feel comfortable coming.

Of course people will be there! I answered reflexively. I hadnt actually thought about people coming to his funeral before that moment. Mattie was going to be the fourth child I buried as a result of a rare disease called dysautonomic mitochondrial myopathy, and I was, I suppose, trying to keep my distance from that inevitable day even while I was preparing for it somewhere within.

But this was going to be different. My other children died very young, all before the age of four. Mattie, on the other hand, was already twelve. He could participate in his own funeral arrangements. It was different, too, because Mattie had achieved renown. He had been on The Oprah Winfrey Show, Larry King Live, Good Morning America; he had written several books of poetry that had reached the New York Times bestseller list and sold millions of copies; he had become the National Goodwill Ambassador for Jerry Lewiss Muscular Dystrophy Association; he knew his heroesJimmy Carter and Maya Angeloupersonally; he had given inspirational talks to thousands about peace, about being true to yourself and following your Heartsong, as he called it. My grief and the grief of those close to him was going to be private, but many others were also going to grieve and want to pay respects.

Most important, however, was that Matties funeral go the way he wanted. He asked if he could tell me some things he would like. I took out a piece of paper and a pen. He talked about what he wanted mentioned in various prayers, songs he wanted sung, who he wanted to do the readings, who he wanted to say his Mass. In the Catholic Church, a funeral Mass is a celebration, a spiritual send-off, and he wanted his celebration to go just right.

Mattie then went on: Please dont send me to a morgue, which is standard procedure after someone dies. I dont want my face covered with a shroud. I dont want to be put in a drawer. I know Ill be dead and itll be meaningless then, but Im alive now and Im afraid of the dark. Please keep a light on in the funeral home, too.

He added that he didnt want to go from the funeral home to the church in a hearse, if that was in any way possible. In a hearse youre alone, with just a stranger driving.

I was thinking of Matties requests as we drove to his funeral, which occurred sixteen months later, on a warm day in late June 2004. I was going down a mental checklist to make sure I had honored all of his wishes. I dont know what Heaven is, but it has got to be good, and I was wondering, from that good space, is my son happy? Does he know I have done everything to make this the celebration he wanted?

I suddenly realized that I had forgotten to put his Black Belt in the casket. Before Mattie became too sick, he had earned a Black Belt in a Korean martial art called Hapkido, and he wanted the reward for that triumph with him. I felt horrible that I hadnt remembered.

Everything else that he requested was there, thougha photograph of him with his older brother, Jamie, the only other sibling alive by the time Mattie was born; a photograph of his other brother, Stevie, and his sister, Katie, both of whom he planned to meet for the first time in Heaven; a photo of Mattie and me; the baptism rosary of our little friend Kaylee, who called him Uncle Mattie; a camera with a flash because Mattie wasnt sure about the lighting situation after death; a small tape recorder with extra batteries; Mr. Bunny, a fleece puppet he had from the day he was born; his Muscular Dystrophy Association (MDA) business cards; a Lord of the Rings bookmark; Austin Powers memorabilia that Mike Myers had sent to him; some Legos; and a number of other items. Despite being Catholic, I bury my children like little Egyptians departing for the next life with their worldly goods, and Mattie, aware of that, wanted as much tangible that mattered to him as the casket would hold.

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