Editor's Note: Award-winning speaker and author Jeni Stepanek, Ph.D. is an advocate for personal and world peace, as well as for children's and families' needs and rights in health and education. For more information about Mattie's life, legacy, and peace mission, please visit the Mattie J.T. Stepanek Foundation at www.MattieOnline.com. For more about Mattie's spirituality and possible cause of canonization, please visit the Mattie J.T. Stepanek Guild at www.Mattie4Sainthood.org. The opinions expressed in this commentary are solely those of the author. View more opinion articles on CNN.
Washington, D.C. (CNN) - "A champion is a winner, a hero... someone who never gives up, even when the going gets rough... someone who overcomes challenges, even when it requires creative solutions... someone who plays the game, even when the game is called life... especially when the game is called life..." -- Mattie J.T. Stepanek
My late son Mattie J.T. Stepanek was only nine years old when he penned those lines in his poem, On Being a Champion.
Despite his youthfulness, he knew a lot about embracing courage and embodying perseverance, because he experienced a life filled with intense and persistent challenges.
And while the words are quite simple, like many of the "Heartsongs" -- or expressions of inner purpose that Mattie shared in his poetry and essays and speeches and everyday conversations -- the message is profound, and the impact of his existence and his essence is life-changing.
Yes, Mattie's words matter.
In believable, achievable, and understandable ways, his messages remind us that hope is real, that peace is possible, and that life is worthy.
But what matters even more than the collective mementos of wisdom he left behind is the inspirational way Mattie celebrated and loved all people -- diverse in age and ability and aspiration, and the way he appreciated and found meaning in the gift of moments that made up each day -- even when burdens outweighed blessings, and even knowing that his time on earth would be brief.
The youngest of my four children, Mattie was born with the same rare neuromuscular disease that claimed the lives of his three siblings -- Katie, Stevie, and Jamie -- during early childhood. In the years I was giving birth, I was an athletic young professional who assumed my babies would be healthy and amazing. I had no clue that they would all die young, or that I, too, would develop progressive medical challenges and physical limitations as an adult.
My children and I were diagnosed with an extremely rare, life-threatening mutation of dysautonomic mitochondrial myopathy. That information wasn't realized until Mattie was already a toddler, and all-too familiar with challenges and loss. Mattie spent much of his first three and final three years in hospital intensive care units. Throughout his life, he faced a multitude of stressors, including loss (of both siblings and friends), divorce, progressive disability (his own and his mom's), financial and emotional struggles, bullying and emotional issues, and a litany of other challenges.
But Mattie was resilient, and he lived with purpose. And, despite early medical and educational predications that he would not survive or thrive, or have the ability to live a life of purpose due to severe medical complications, Mattie not only defied odds, but he did so in amazing ways.
By the age of three, he was reading, writing, and offering creative expressions on coping with challenges and on celebrating life. He believed his purpose in life was to shape and share messages of hope and peace that he said were placed in his heart by God.
By age five he was discussing his philosophy of remembering to "play after every storm" with audiences in the thousands, he was advocating for improved hospice laws for children with elected leaders, and he was comfortable being interviewed on national television -- explaining how all global neighbors are "unique and essential gifts in the mosaic of humanity."
By age eight, Mattie was delineating "pathways and choices" that can lead to personal and global peace, and he had earned a Black Belt in a self-defense oriented martial art that emphasizes respect for self, others, and the world. He was also beginning high school courses.
By age ten, the first of his seven New York Times bestselling books was published, and he was becoming a frequent guest on shows like "Oprah," "Good Morning America," and "Larry King Live."
By age 12, he was interacting with world leaders and encouraging journalists and media correspondents to move beyond sensation and finger-pointing and fear tactics, and to begin shining light on the genuine goodness that is a part of our world to "make peace the news!"
By age 13, Mattie was an international inspiration to millions of people in a world that was, and is, becoming more and more desperate for hope, and in need of practical and sustainable peace.
He was also trying to prepare me for what he knew was his impending death, as his health continued to decline, and medical science was running out of stopgap measures that had been giving him bits of extended survival time.
By June of 2004, just a few weeks before his 14th birthday, Mattie wondered aloud if he had done enough for his life's purpose to have an impact that would last -- or perhaps even grow -- beyond his youthfulness. He entrusted me with carrying on his work and with continuing to shape and share his peace mission. He implored me to not lie down in the ashes of his mortal existence saying, "choose to inhale, do not breathe simply to exist." I promised him that I would, somehow, be okay.
And then, with the word "Yes!" he died in my arms.
'My strength to cope'
As each of my first three children grew weaker and succumbed to this disease, my strength to cope, my reason to keep existing and to find meaning in life and in loss, was having a child alive who still needed me to be "mommy." I needed to be a champion for that child and to be an advocate for needs and to nurture an understanding of how much they mattered -- not for what they said or did or how long they were here, but because they existed in this world.
When Mattie died, I buried my last surviving child.
Mattie was my son, and my student and my conversation buddy. But he was also my friend, and my teacher and my spiritual mentor.
We lived and traveled together. We ate and played together. We laughed and cried, and we agreed and disagreed and we dreamed and prayed together.
Someone once said that Mattie and I were so close, it was like we were two entities with a shared spirit. I miss that part of my spirit.
And in honesty, even though I promised him that I would find reason to get out of bed each day and to live with purpose, in the months and years after he passed, I struggled with how to fulfill that promise.
I was weighted with grief. And I was unsure of my purpose -- my reason for being or my Heartsong -- beyond being a parent to my children. But across the years, I have been inspired more and more by Mattie's messages and by his being, and I have grown in recognizing and realizing purpose -- within and for myself, and with and for others.
It has been in reflecting on Mattie's words and way of living -- re-reading his poetry and essays and re-visiting the letters and conversations people have shared with him and about him -- that I have come to understand his vision of Heartsongs: that whatever it is we most seek or need in life, that is what we can and should offer to others -- especially because we understand why it matters so much.
And in giving, truly, we do receive.
It has been in responding to Mattie's messages and materials -- creating resources and activities from his guidelines for understanding various elements of peace and from his outlines for choosing peace in attitude and habit and for equitably tending to basic human needs -- that I have come to appreciate his vision and mission, and the practical and powerful impact of his wisdom.
Like Mattie, I sincerely believe that peace can move from mere possibility to rippling reality -- choice by choice, person by person, and community by community. It has been in reaching out with Mattie's essence and legacy -- in serving as a steward for Mattie's Foundation and peace mission, in encouraging leaders to advocate for a National Peace Day that informs and inspires people about beginning sustainable peace through deliberate choices rather than just pausing violence in response to a crisis, in creating local peace gatherings each year that bring families and leaders together to commemorate and celebrate Mattie's peace concepts in fun and community-oriented ways, in mentoring global teens as they tend to basic human needs and as they grow in realizing the power of living with purpose, in supporting the efforts of the members of Mattie's Guild as they gather information for his possible cause of canonization (i.e., sainthood) in the Catholic church, and in so much more -- that I have come to understand how Mattie was, and is, a champion of change, for people of diverse cultures and faiths and strengths and needs around the world.
While I miss being "Mattie's mom" and "mommy" to my four children, I have come to embrace my identity, and my purpose, of being "Mama Peace" to youth and adults around the world, and "Mom-mom" to my kin-family.
We cannot change facts or choose many of the realities that are the fabric of our life stories.
But we can choose how we reflect on and respond to and reach out with or beyond any fact or reality. And we can choose to never give up, and to live as a champion, even when the going gets rough.
I will always be a bereaved parent. As "Mattie's mom," I will forever grieve the loss of my young son. But as "Mama Peace," I can, and will, grow forward -- inspired by the power of Mattie's message and how he lived with purpose, and celebrating the power of my own message and choice to live with purpose.
'A virtuous spirit'
He lived briefly, and has been gone longer than he was with us on earth. Yet, Mattie still matters.
He motivates us to celebrate that we each matter, even as we agree and disagree, and laugh and cry, and enter and exist and exit this world.
We each arrive and live and leave with purpose, regardless of age or ability or aspiration, and that matters. And the gift of purpose -- with choice and with faith, and with role models and peaceful connections and mutual support -- can empower any of us to live as a champion, and to change our world -- for good.
Mattie was a child who, with choice, exemplified the hope and peace of which he wrote and spoke. He was a young man who, with devotion and faith, was strengthened by prayer and by living with purpose.
He believed that his purpose, like everyone's purpose, was a gift from a higher power. He celebrated his reason for being -- his Heartsong -- as a messenger for humanity, and he was and is and will be a champion for change.
He was and is and will be my hero, who inspires me to strive to be a stronger and better person, and to live with gratitude and purpose -- even when the going gets rough... and especially when the game is called life.
A growing legacy
Mattie J.T. Stepanek's life was brief in length, but his legacy is growing in depth.
His story is not about a child who died, but a about a being, a champion, who lived -- with purpose and peace -- and who did so with such grace and impact that today, he continues serving as a role model for global neighbors, diverse in age and ability and aspiration.
The closing line of his On Being a Champion poem brings this life, this legacy, the truth of this lesson, full circle:
"There can be a champion in each of us... if we live as a winner, if we live as a member of the team, if we live with a hopeful spirit, for life."