BETHESDA, MD. -- It’s standing-room only at the Borders bookstore here, where Jeni Stepanek is talking about her new book, Messenger. The book is about her son Mattie, the New York Times-bestselling inspirational poet who died five years ago at the age of 13 after battling a rare form of muscular dystrophy.
It’s the same disease that now confines Jeni Stepanek to a wheelchair.
In his short life, Mattie wrote six books of poetry and a collection of essays that he collaborated on with Jimmy Carter. He became a friend to the rich and famous and touched millions of people around the world with a message of hope and peace.
“Since he died, I’ve hit some very, very low points,” his mother told the PBS show “Religion & Ethics NewsWeekly,” taking frequent draws on an attached breathing tube. “I have had mornings where I’m not quite sure what the sane reason is to bother getting out of bed.”
But she added, “I always find one, and if I can’t find one, what I’ve learned is to allow other people to give me a sane reason to get out of bed.”
One of Stepanek’s biggest reasons for making it through the day is her quest to keep her son’s legacy alive. Before he died, Mattie said, “God has given me a very special opportunity that I should not let go to waste. I use the gift he has given me.”
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From the time he was a little boy, Mattie told his mother that God was putting messages in his heart. He gave voice to the messages through his poems, which he called his “heartsongs.”
His mother said there were several basic themes.
“Hope is real. Peace is possible, and life is worthy,” she said. “The best I can understand it is that it really is the universal truth. It’s what Jesus Christ taught us; it’s what Gandhi teaches us; it’s what Martin Luther King teaches us. … In giving we shall receive, in doing good, good happens.”
Since Mattie died, Stepanek has received thousands of letters and e-mails from people who say he continues to inspire them. There is even a grass-roots movement that is trying to open an official investigation into whether Mattie should be recognized as a Catholic saint.
“I have had people who have contacted me to say they believe Mattie has interceded in their lives,” she said. “They believe that Mattie has healed their child or touched their spirit, or turned them back to God, or prevented them from committing suicide.”
As the mother who knew her son better than anyone, she finds it humbling -- and a bit overwhelming.
“I feel the responsibility to share with people the truth of my son’s life,” Stepanek said. “What I don’t want people doing is … putting him up on a pedestal -- that he’s a little guru; he was perfect; he never got angry; he never got sad; he only spoke bits of wisdom. That’s not who Mattie was.”
Stepanek chairs a foundation named for Mattie that tries to make his message as accessible as possible, including school curriculum projects based on his writings.
As her health continues to deteriorate, Stepanek, 50, has herself become an inspiration to many. Mattie was her fourth child to die of the disease she didn’t know she was carrying. She was diagnosed when Mattie was nearly 2, after her oldest two children had died and her third child was also dying from the disease.
“When Mattie died, that’s when the grief became so overwhelming, because where do you put your mommy role?”
She said her Catholic faith has helped her cope and, despite some times of questioning God, her faith has grown dramatically.
“I’m very good at, through prayer, giving God a to-do list: ‘Dear God, this is where I need you and this is how you can meet my needs.’ … I think I began to realize towards the end of Mattie’s life, prayer is not just giving God your wishes. It’s asking to bring God into whatever the moments are in my day,” she said.
Although people tell her they’ve felt Mattie’s spirit after his death, she never has.
“What I would give to have my son come and stand and just say, ‘Hi’ or ‘Yo,’ just say anything, just touch me. But I know that would be wrong. And I think my son is wiser than that. Because if my son came and spoke to me or touched me … I’m afraid I’d never emotionally or physically be able to move from that spot,” she said.
She said that Mattie has given her the hope and faith to move forward.
“He said, ‘When I’m gone, promise me you will choose to inhale, not breathe merely to exist.’ And that means finding some worthy reason to move into each next moment,” Stepanek said. “And that’s the most difficult choice I face every single day.”
But, she said, “it’s the most worthy choice.”