About Jeni Stepanek
There is nothing so tragic, so contrary to the natural order of things, as the death of a child before a parent. Jeni Stepanek has endured this agony, not once, not twice, but four times.Ms. Stepanek lives with mitochondrial myopathy and uses a power wheelchair for mobility. Despite doctor's reassurances that each subsequent child would be healthy, the infant-onset form of her disease led to the early deaths of three of her children. Her fourth and youngest child, Mattie J. T. Stepanek, was Jeni's "unintended miracle," and when he, too, was diagnosed, Jeni devoted everything she had to building a medical and spiritual support team for the enormously gifted and loving child.
From the start, Jeni encouraged Mattie to express his feelings in words, and showed him how he could use poetry not only to cope with his own challenges, but also to share his tremendous joy for life with the world around him. By the time he was twelve years old, Mattie had published five New York Times-bestselling books of his poetry and had shared that poetry on Oprah and Larry King Live. Millions of people heard Mattie's "Heartsongs," and were moved, comforted, and inspired by his words. Indeed, his contribution continues even after his passing with two new books, Reflections of a Peacemaker: A Portrait Through Heartsongs and Just Peace: A Message of Hope.
We would all be proud to claim a life as rich and full as the one Mattie achieved during his too brief thirteen years in the world. Since his death, Jeni Stepanek's message of compassion continues to touch the lives of millions of people around the globe who have come to know and cherish her and her young son. She recently completed the editing for Mattie's final two manuscripts, and she is currently completing a doctorate in early childhood special education with a specialization in anticipatory grief. Her mission is to help children with disabilities, their families, and the caregivers and professionals working with these children and families to cope with their unique challenges and embrace the courage, hope, and faith that made her own son's life a beacon to us all.
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Click here to listen to the Mattie Stepanek story.
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My hero is Mattie J. T. Stepanek--my son, and my best friend in the world. Through Mattie’s innocent and uncensored expressions about life as he saw it and felt it and shared it in his "Heartsongs" poetry and other words, I have been inspired to think more deeply about my own life. Sometimes it takes the wisdom of a child for adults to really appreciate what we do have in life, and to remember to celebrate the gift every day.
My hero, my son, my best friend is no longer here with me in body. Mattie died on June 22, 2004, just weeks before his fourteenth birthday. Because of his disability and intensive medical needs, we were almost constant companions. We shared thoughts and hesitations and hopes over morning coffee and afternoon tea. We shared laughter and memories over word games and board games and practical jokes. We shared hugs and tears and respect and appreciation for life and for each other in so many moments. It has been said that Mattie and I were so close we were like two people with but a single spirit. I miss that part of my spirit.
I have lived what seems like an eternity of moments without my hero, my son, my best friend, yet I look out toward the future and know that an eternity of eternities still awaits me. Each day that I have lived without Mattie is like the beginning of another "forever" all over again. And the easiest thing to do would be to lie down in the ashes of my life without Mattie, and die. But I can't, and I won't.
I can't because, before my son died, he made me promise him that I would do whatever I could not to give in to sorrow and grief and the agonizing weight of an empty lap and empty arms. And I won't because I learned from my son that we create our own epitaph and legacy--or as he called it, "the echo and silhouette of our essence"--through every choice we make in every moment of life with which we are blessed…even if some or many or seemingly all of those moments come filled with challenges and burdens and the pain of loneliness. And so I will try to find reasons to be truly thankful and hopeful in whatever moments may grace my lifespan, and I will strive to honor my son by continuing to "touch the world gently" in his memory.
I will go forth, carrying his “message of hope and peace” with a humble pride, and I will "always remember to play after every storm" because of my hero: Mattie J. T. Stepanek--my son, and my best friend in the world.
Page created on 2/28/2015 7:16:12 PM
Last edited 3/22/2019 10:09:12 PM
Copyright 2005 by The MY HERO Project
MY HERO thanks Jeni Stepanek for contributing this essay to My Hero: Extraordinary People on the Heroes Who Inspire Them.
Thanks to Free Press for reprint rights of the above material.
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