I want people to remember me and say, "Oh yes! Mattie! He was a poet, a peacemaker, and a philosopher who played."
This is how Mattie wanted us to remember him- I will remember him in this way and so much more. His soul and spirit moved me while he was alive and continues to resonate after his passing.
Mattie truly was a messenger from God, placed on earth for unfortuately a very short time, but in those years his spirit and profound wisdom touched the lives of everyone whom he encountered. Thankfully, through Oprah's powerful media influence, I and millions of viewers worldwide came to know and love Mattie. I will never forget his pure, joyous smile that warmed my heart and his profound, poignant words which continue to uplift my spirit.
Jenni Stepanek's memoir reflects upon Mattie's strength to overcome obstacles ("remembering to play after every storm"), inspire others (everyone from from friends, family to world leaders), show compassion (one example, consoling his mother after her bad dream, during one physically painful night) and share his Heartsongs.
Mattie defined Heartsongs as "the longings and hopes and feelings that both describe and stir each of us.". He wished that each of us would "take our Heartsong, package it in the best way we can, and offer it to others.". What a beautiful way to encourage each of us to share our passions and God-given gifts to others as we try to live our best lives. Mattie shared his Heartsongs through his poetry, public speaking events and daily through example.He lived a life full of grace, gratitude, hope and courage which embodied his Heartsong. "Thank You, God,
Not just for life,
But for our journey through life.
Life is a miracle,
And a journey through life
Is so full of so many more miracles
If we travel with our Heartsongs."
Mattie's Heartsongs touched the lives of millions. He served as an unofficial peace abassador sharing his message with members of Congress, Nobel Peace Laureates and countless others. During the final months of his life, Mattie co-authored with President Jimmy Carter a book dedicated to peace. He brightened the lives of camp members at the annual MDA Summer Camp and helped spread public awareness about muscular distrophy at Jerry Lewis' telethons. Most importantly, he was loved and treasured by his mother.
Mattie was not only a Messenger of peace and hope, but was also a vibrant child despite his physical struggles and limitations, reminding us to "play after every storm". He had a keen sense of humor, often playing practical jokes on others (like the time he drank a cup of apple juice pretending it was urine, in front of a horrified medical staff). Mattie appreciated the simple, beautiful gifts of life such as sunrises, not understanding "why everybody wasn't out on the pier at sunrise" and missing this miracle.
Throughout his life, God's miracles presented itself in numerous awe-inspring ways. On several occasions, he defied the odds in medical science and overcame life-threatening emergencies and complications. An elevator, which is not supposed to work during a fire, transported Mattie and his mother from the second to the first floor to safety and then immediately stopped working. Finally, during his funeral Mattie continued to shine his light and message from Heaven when a rainbow appeared following a brief rain storm, again reminding loved ones to "play after the storm".
While Mattie is a beacon of light, one should not forget to honor and respect Jeni Stepanek's strength. Diagnosed with an adult-onset dyautonomic mitochondiral myopathy, Jeni passed on this disease to all of her four children. Despite losing her previous three children and knowing the terminal disease's effect on Mattie's life, she provided Mattie with a loving, nurturing environment instead of dwelling on the losses in her life. Mattie honors her love and gifts to him in a letter her wrote for her to read after his death:
"You led me, inspired me, with wisdom each day,
And like glory of sunrise at dawn,
You led me from darkness, and held me upon
Your lap when I feared-when I most needed shelter,
You kissed my tears, fading hurts, calming welter.
Like a brave shepherd, you've been my life's guard,
Witnessing peace through your heart-loving ark..."
I will always treasure this book, frequently turning to it as a source of hope, strength and reflection. It is not only the story of a very special boy, whose time on earth inspired and will continue to inspire countless inviduals; it is a love story of a mother and a son.
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