Books by Mattie Stepanek

Heartsongs / Journey Through Heartsongs / Celebrate Through Heartsongs / Loving Through Heartsongs

*   *   *   *   *

Mattie Stepanek: A Tribute

By Ugochukwu Ejinkeonye

In the Summer of 2003, I publsihed an essay on Mattie Stepanek (http://www.mattieonline.com/about.htm), the then 12 year old and terminally sick poet in Rockville, whose five volumes of poetry had sold millions of copies. Indeed, three out of the five volumes had made the New York Times Best Seller List.

But, sadly, on Tuesday, June 22, 2004, at the Children’s National Medical Centre in Washington, Mattie Stepanek passed on, as a result of complications related to muscular dystrophy, the disease he had battled with since he was born. He was only 13. 

Mattie’s life and story had a way of melting one’s heart each time one encountered him. He began writing poetry at the tender age of three. Although he had    this terminal illness, Mattie was able, with his very appealing poems and emotional speeches, to affect the lives of many people around the world.

Each time I read his poetry or anything written about him, my heart melted, tears came to my eyes, and I longed to hug him, pray for him, say nice things to him, and see him get well and indeed possess in full the life he loved and celebrated so much. 

It was amazing how a child so sick and dying could inspire so much confidence in others and make them see reasons to “celebrate life” despite the odds.

After watching Mattie’s appearance on OPRAH WINFREY SHOW, 81-year old Elizabeth Haestie said: “I ‘met’ Mattie for the first time on the Oprah show. I am an 81-year old English lady, in good health, but sometimes feel somewhat depressed that I don’t have a great many more years ahead of me in this life. But Mattie has knocked all the feelings out of my mind altogether, and I don’t think they will ever return. I am an ‘old soul’ too, Mattie, as you are and I shall remember you and your mother all the rest of my life.”  

Heartsongs: That’s one word  that dominates Mattie’s poetry. It forms part of all his best-selling titles. Mattie’s consistent counsel was: life may be full of stress and pains, but never allow them overwhelm you, resist despair, don’t  allow yourself to sink … listen to your ‘heartsong,’ the profound melody that rings deep down your heart… discover it, follow its rhythm, and usher sunshine into your life and others.  

In 2001, VSP Books collaborated with Hyperion books to publish Mattie’s maiden book of poems, HEARTSONGS. It was a venture that turned out an outstanding success. Mattie soon became a national bestseller and an American celebrity.

At 11, Mattie introduced himself thus: “My name is Mattie Joseph Thaddeus Stepanek. I am almost 11 years old, and I home-school, doing a high school curriculum. I began writing poetry when I was about 3 years old, and now have a collection that contains thousands of poems, dozens of illustrations. I have even bound some of my books at home, and a bound anthology of my writing was presented to the Library of Congress during the Fall of 2000. I have also won many awards for my writing, including the Melinda A. Lawrence International Book Award in 1999 for  ‘most inspirational work.’ I have a rare form of muscular dystrophy called mitochondrial myopathy, and I also have something called dysautonomia. That means that ‘my automatic’ systems, like breathing, heart rate, body temperature, oxygenation, digestion, and things like that don’t always work well on their own. So, I use extra oxygen all the time, and when I am tired or sleeping I use a ventilator that breathes for me and save energy and move my medical equipment around. My two brothers and one sister died during childhood from the same thing I have, and my mother uses a wheelchair all the time because she has the adult form of this disability.” 

In 2001, Mattie was appointed the Maryland Goodwill Ambassador for the Muscular Dystrophy Association. A regular face at big events where he spread the message of peace and hope, his enthusiasm and positive outlook despite his fragile state was the challenge many distressed people needed to go on living. He featured regularly at fundraising events aimed at helping the efforts to find a cure for neuromuscular diseases, and offer support to affected children and their families, to go on “celebrating life” till a cure is found. Mattie told Washington Post in 2001 that he believed a cure would be found for this disease, maybe after his life time.  

With these books, Heartsongs, Journey Through Heartsongs, Celebrate Through Heartsongs and Loving Through Heartsongs (released in 2003 by Hyperion Books), Mattie’s pride of place in American poetry was firmly established. Cheryl Barnes, who with her husband, Peter, and their company VSP Books collected Mattie’s poems which they issued in a paperback in a 2001 collection, told Washington Post that she “had a hard time believing a child could write with such wisdom…He’s bright beyond his years. He is a   truly remarkable child.” 

Former U.S. president, Jimmy Carter, became Mattie’s hero due to his global peace efforts and rigorous disease-eradication campaigns. In September 2001, while Mattie was confined to a hospital bed in the intensive care unit, staff members of the hospital arranged for him a 15 minute telephone chat with Carter where Mattie raised such issues as the problems in Bosnia and Africa. Surprisingly, he did not talk about his ill-health.

Highly affected by this brief encounter with such an exceptional child, Carter decided to write the foreword to Mattie’s next book, Journey Through Heartsongs. But Mattie and Carter were to meet face-to-face when Dianne Sawyer featured both of them on her live television show, “Good Morning, America.” 

Mattie’s speech during his October 19, 2001 appearance on OPRAH TV Show dwelt on his desire to be a peacemaker in the world and his love for life and poetry. Oprah Winfrey was so moved by the passionate concern of this ailing little boy for peace in a  world that had no answer  to his health problems that she had to exclaim, after reading her favourite lines from Mattie’s poetry: “I think that’s so important, especially now, when everybody is feeling a sense of fear and having been terrorized, to look at what you have in your life and have a sense of gratitude and see the miracles in your life. And you, even though you’re hooked up to all this equipment, and we had to plug you in during the commercial break, give you more oxygen, you still see miracles everyday in your life.” 

Definitely Mattie Stepanek couldn’t have seen his first birthday were he a Nigerian boy, let alone dream about writing poetry. Where are the medical facilities in Obasanjo’s Nigeria to sustain the precious life of a boy so sick,  so tender, and yet so amazingly gifted?

And to America still horribly inebriated with unspeakable racial prejudices, Mattie has penned down the following lines:   

After my piece on Mattie in the summer of 2003, Ms. Jeni Stepanek, 47, Mattie’s Mom, sent me a very moving e-mail and said: “I was surfing the net…(and) came across …your article about Mattie, and was so touched by your words. Mattie’s reward in life, is the ability to touch others deep in their (lives) such that it makes a difference to them …Thank you, and perhaps we will meet you during August. Take care, Jeni Stepanek (“Mattie’s mom)” 

My heart goes out today to wheelchair-bound  Jeni Stepanek, who, now left alone with Mattie’s exit, sips the juice of sorrows. 

Please, Jeni, listen to your heartsong, as Mattie would counsel, and let God’s healing light into your life.  The Muscular Dystrophy Association (MDA) has lost a rare gem and great pillar of support. But they will never lose the sympathy of this writer.

I loved Mattie. His death was such a rude shock. His poetry, the product of a child’s mind…very simple lines, yet very insightful and deeply touching, and his exceptional life, have left an indelible mark on me.

Good Night, Child.

*   *   *   *  *

Ugochukwu Ejinkeonye  writes a column (SCRUPLES) in The Independent (www.independentngonline.com every Wednesday. Email: scruples2006@yahoo.com:  BlOG: www.ugochukwu.blog.com