In his 13 years, Mattie Stepanek became nationally known as a "peacemaker and poet" whose story of living with a rare neuromuscular disorder led to five published books, numerous television appearances and a friendship with former President Carter.
After he succumbed to muscular dystrophy in June 2004, his mother, Jeni, decided to carry on her son's work. Today marks the national release of "Reflections of a Peacemaker: A Portrait Through Heartsongs," the book Mattie was working on when he died.
"I miss the hugs, shared coffee, all the conversations, all the quiet moments," Stepanek said. "Yes, I miss all the poetry and all the fun things he did, but I miss my little boy."
A poet since the age of 3, Mattie started writing in part to help him deal with his disease, which causes generalized muscle weakness and difficulty in regulating such body functions as heart rate and breathing. He used a power wheelchair, ventilator and supplemental oxygen, in addition to other treatments.
Jeni Stepanek has a milder, adult-onset form of the disease, but was not diagnosed until her four children were born. Mattie's two brothers and a sister also died of the disease.
Stepanek described Mattie's final days as "very difficult."
"His muscles were so twisted they were breaking his bones and he was gasping for breath," Stepanek said. "I finally looked at him and told him I would be OK and he had done enough."
After telling Mattie he had done everything he had to do and he could rest now, Stepanek said she climbed into her son's bed and took Mattie in her arms. Ten minutes later, his heart stopped beating.
Stepanek had not read all Mattie's poems in "Reflections of a Peacemaker" before he died. The book contains poems, essays and journal entries which explore disability, despair and death as well as the gifts of nature, prayer, peace and Mattie's belief in something "bigger and better than the here and now."
"Shortly before he died, he told me where to find some of his journals that he had in his bedroom so I could include them in the book," Stepanek said.
One poem, named "untitled," was especially meaningful to Stepanek. Part of it reads:
My mother, my friend,
My Heart song,
My more and my
Every and all of life,
"I'll love her forever,
I'll like her for always."
And may she remember
"As long as she's living,
Her baby I'll be,"
And may she be comforted,
"For as long as there's Heaven,
Together we'll be..."
"That was a gift that he wrote a day or two before his heart stopped and left it for me," Stepanek said. "That was a gift that he wrote."
Mattie also wrote about his impending death. In "Purple Moon," he writes, "I realize the pull of the ebbing tide is not so far away."
Stepanek said he knew he was dying, but he also planned for the future. He wanted to have seven children.
"He had planned seven kids, named them, was thrilled about them," Stepanek said. "But he also knew that he had just limited moments to give a gift to the world, a gift of hope and peace through his words."
A portion of the proceeds of "Reflections of a Peacemaker" will be donated to the Muscular Dystrophy Association Mattie Fund for medical research to help find treatments and cures for childhood neuromuscular diseases.