“Remember To Play After Every Storm” – Mattie J.T. Stepanek
If I can stop crying long enough…
I’ll write this post…
OK…I’ve got it together now.
It’s a quiet Sunday morning…the kind where there is no other option than to lie in bed, fire up your laptop and embark on a new surfing adventure.
The soft illumination of the screen, the utter stillness of the early hour and the rhythmic breathing of my still sleeping husband have put me in a prayer-like state.
And, as always, Spirit answered my prayer…even the one I didn’t know I had.
When you’re a writer and intuitive, ideas for book and blog material are never ending. Words just…flow.
Occasionally, though, you come upon material which evokes such profound respect you desperately want to use your words in a way that will honor both subject and story.
And the words just…stop.
After an hour or so of staring at the screen, drying my eyes and trying to find a jumping off point for this post, the words “let him tell his own story” popped into my head…and I was calm.
My prayer had been answered.
Thank you Spirit.
The full quote from the title of this post, “Remember To Play After Every Storm…” is as follows;
“…we must remember to play after every storm and to celebrate the gift of life as we have it, or else life becomes a task, rather than a gift. We must always listen to the song in our heart, and share that song with others.” - Mattie J.T. Stepanek
Some of you will know Mattie’s story.
For those who do not, a box of tissues might be in order.
The physical portion of his story came to an end in June 2004. Mattie’s spirit…well…that goes without saying.
By the time Mattie Stepanek was six years old he’d written several hundred poems. He’d also been diagnosed with a hereditary and terminal disease called dysautonomic mitochondrial myopathy.
The same disease had already taken the lives of his three older siblings…and Mattie’s mom suffered with the same rare form of Muscular Dystrophy (MD).
Facing the Future
Every journey begins
With but a small step.
And every day is a chance
For a new, small step
In the right direction.
Just follow your Heartsong
– Mattie J.T. Stepanek
Mattie began writing poetry at three years old. Though he could already read, much of his early poetry was dictated to his mom who, struggling with MD herself, coping with the loss of three other children AND a single mom, managed to write every word.
Over his fourteen short years, from a motorized wheelchair…often from a bed in ICU… and always attached to an oxygen machine Mattie:
- Penned five New York Times Bestsellers (The Heartsongs; a series of poetry books)
- Was the lyricist for the Billy Gilman CD, Through Heartsongs
- Acted as the National Ambassador for MDA
- Appeared on Oprah!
- Appeared on Larry King Live
- Appeared on Good Morning America
- Appeared on the Jerry Lewis Telethon
- Was selected by the USA Today as one of “25 people who moved us in the past quarter-centurylives of indelible impact”.
- Received countless awards for his writing and humanitarian efforts
- Participated in countless fundraising events to help find a cure for neuromuscular diseases
- Appeared on countless other T.V. shows, radio shows and has his poetry and short stories published in many other books
He was once asked;
Do you ever get angry or scared about your disease or dying?
“Of course I get angry and scared. I am very human. Some people think I am always brave. I try to be, but I cry like the next person sometimes. I am needle phobic and pain phobic, so that doesn’t help. But even if I get upset, or think, “I can’t do this anymore,” I get myself together and pray or play or talk with my mom or a close friend, and I get beyond that tough time. I might say, “Why me?” But then I say, “Why not me? Better me than a little baby, or a kid who doesn’t have strength or support.” I am very blessed to have God and my mom so involved in my life”.
- Mattie J.T. Stepanek
When Mattie was dreaming about what he wanted to be when he grew up and he did dream of that even when he was aware of his reality Mattie wanted to be a peacemaker and a Poet Laureate.
When asked who his hero was – because every little boy has one…even if he is one;
“When I grow up, I want to be a peacemaker. My biggest role model for this is Jimmy Carter, who has been a wonderful peanut farmer, politician, and peacemaker. I call him the perfect hero.”
- Mattie Stepanik
In 2001 Diane Sawyer and the staff at Good Morning America, arranged for Mattie to meet his hero face-to-face on live T.V.
In President Carter’s own words, “we exchanged greetings and formed, I would way, an instantaneous bond of love…”.
That love was, maybe, never more apparent than when Former President Carter delivered the eulogy at Mattie’s funeral service
I would post excerpts from the speech but I think it’s really important for you to read the post in it’s entirety so I’ve posted the link at the bottom of the page.
Every now and again a writer simply can not find the right words.
That’s OK..
Mattie Stepanik the poet, humanitarian, peacemaker…the perfect hero…the perfect little boy…had all the right words for all of us.
For more information or to get involved, visit
For former President Carter’s eulogy, visit
http://www.cartercenter.org/news/documents/doc1791.html
(2 votes, average: 5.00 out of 5)
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I can remember seeing him on television many times. It’s sad that the world lost such a promising talent, but we can all find solace in the many words that he left behind.
A quote, the original author unknown to me states, “The light that shines twice as bright, shines half as long.” Maybe that explains Mattie’s brief tenure with us. His thoughts and words contain so much love and wisdom it touches me to my very core when I realized how young this boy was when he created such phenomenal prose.
Mattie’s legacy of wisdom and guidance remain a glowing example for all of us. He was the epitome of lead by example.
If we all just live that attitude, even just a couple of days each week, or a couple of hours each day, imagine where we will be.
What a perfect reminder tonight for me, Colette. Thank you. I’m on my way tonight to celebrate the life of a very dear friend that passed from non-hodgkin’s lymphoma last month after a year long battle. Mattie’s quote is what I will take with me tonight to this special celebration.
Thank you Colette…I remember Mattie. My words fail me now. I feel so blessed to have read his poetry. He was a mighty soul. I do know now, thanks to you, that his spirit lives on…
I watched Mattie’s journey from beginning to end and he is the bravest and gentlest soul I have ever had the pleasure of viewing. “Bright Light” seems to sound so insignificant as a description of this beautiful being. I’ve just always wanted to hug and kiss him and tell him thank you! Thank you for your unfiltered, loving and simple way of explaining what is really important in this lifetime. I have since thanked him in my prayers instead which is, as we all know, just as valid as ever! Thank goodness. Thank you Colette for the beautiful reminder that the soul and it’s lessons are infinite!!!
Thanks Colette..I love Mattie..I saw him on tv many times..especially Oprah…he seemed like an amazing individual…any time I saw him I was blown away by his wisdom….he seemed to me ….to be someone who’s been here before. He was inspiring to me because it makes me think of how many of us tend to whine about the smallest things…when you see someone like him who remained hopeful and compassionate to others despite all he was going through…he truly was a hero…and will live on in his incredible poems and the love he gave to people he didn’t even know.
After researching the term inspirational, I saw your blog on Tuesday. Interesting and made me think…
So very wonderful to have had this boy (inspiration)in our world … so very sad he has gone without our world following his example.
Blessed Be
I needed to read this today and remember the many blessings that are ever present in all our lives. I remember seeing Mattie on Oprah and cried the whole time, he had an amazing spirit.
Blessed Be
Children are amazing, what else can I say!
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