Several years ago, I was hanging around the house one day — gee, that’s unusual — and my mother called me in to see something she was watching on TV. It was Oprah Winfrey interviewing a little boy in a wheelchair. I think I must have made a face or something, because my mom said, “No, really, watch this. This little boy is amazing.”
I’m sure I was skeptical, because it wasn’t uncommon to see a fellow four-wheeler as the centerpiece of some human interest story on daytime television, if they were short a foul-mouthed philandering hermaphrodite albino midget wrestler addicted to tanning salons. (I was weary of gimpsloitation pieces, if you will.)
My skepticism was quickly washed away, however, as I watched this eloquent preteen with charm and charisma to spare. He was gentle and sweet, yet passionate; speaking with all the enthusiasm his tiny frame and limited lung capacity could muster.
When the meek inherit the earth, Mattie J.T. Stepanek will be a king among kings.
He had muscular dystrophy, as do I, though, a different kind. (His illness is called Dysautonomic Mitochondrial Myopathy.) Mattie had far more use of his hands and upper body than I ever did, but he required a portable ventilator on his chair to help him breathe; which pulled at my heartstrings then, and even more so now that I’m older and my illness has progressed to where it will be necessary for me to have some kind of oxygen assisting apparatus soon.
Mattie was a New York Times best-selling author whose primary themes were/are Peace, Faith, Hope and Love. Not new ingredients, but I promise you that there will never be a new recipe for mankind’s reason for being. As it was in the beginning, is now, and ever shall be. And a lot of people understand this only after living long lives filled with many shallow concerns, and eventually seeing through the trivial and vain things that they’d once felt were important. But this precocious poet was able to see the big picture long before junior high. (Yeah, so get your act together, slacker.)
He wrote a series of books entitled “Heartsongs”. As you’ll see below, a Heartsong is an individual’s gift they’re here to share with the world, a person’s special calling, or their “reason for being” as Mattie put it.
In the “Apple doesn’t fall far from the tree” category, you can’t talk about Mattie Stepanek without also mentioning his remarkable mother, Jeni Stapanek. In fact, a mere mention shouldn’t suffice. His Heartsong is inextricably linked to hers. Behind every great man there’s a great mom.
You see, Jeni herself was afflicted with the same illness that she unknowingly passed on to all four of her children. (She was diagnosed with the adult onset form of muscular dystrophy only after their births.) She was eventually confined to a wheelchair herself, and though she was met with resistance early on from some who thought Mattie would receive better care elsewhere, she raised him to be the outstanding best-selling peace ambassador (and someday Saint) that he turned out to be.
And speaking of saints, a woman who has to bear the loss of all four of her biological children and is able, not only to maintain her sanity, but rise up from the experience with such dignity and grace, and become an inspiration to people all over the world by carrying on in the work that her little boy began, keeping Mattie’s legacy going through public speaking and serving as the Chair of the Mattie J.T. Stepanek Foundation — Jeni Stepanek is the embodiment of what we’re all supposed to be trying to accomplish here.
She’s also a National Vice President for the Muscular Dystrophy Association, and a Governor for the We Are Family Foundation. And, in her spare time, she … doesn’t have any spare time.
Mattie and his mom left their mark in my heart and mind when I first saw them all those years ago. I remember finding out that Mattie had passed away and it felt as though I had lost a friend. It’s strange, because I know far more about him now than I did then.
When you’re a disabled person (well, speaking for myself anyway), you receive a lot of praise you don’t feel worthy of. People say things like: “You’re courageous” and “you’re an inspiration to me,” and you feel like they’ve mistaken you for somebody else. Well, after becoming aware of Mattie and Jeni Stepanek, I think I know the kind of people they had mistaken me for.