A biography for Mattie Stepanekhasn’t been written yet.
“Sunset is still my favorite color, and rainbow is second.”
“We're divorced from my father because he did some mean and scary things to us.”
“Remember to play after every storm.”
“Expressing my feelings and then the opportunity to share it with others is just such a gift.”
“I've gotten books published. I've met famous people that are very nice. I look back and I say, 'Wow. Thank you, God, for giving me this gift. And thank you for helping me to keep going.'”
“The doctor said, 'He can't last a week.' And I did. And they said, 'There's no way this kid's going to last a month.' And I did. And so they said, 'Two years. He's not going to make it.' Two years. 'Five years. He can't do that.' I lived to be five years. 'He's never going to hit double digits.' And here I am, a new teenager.”
“I do fear death. But what I actually fear is not dying. I mean, true, it will be sad. But I know that there is a better place waiting for me.”
“The way of life is not as easy as some people think... like me.”
“I feel that God has given me a very special opportunity that I should not let go to waste. I use the gift he has given me.”
“I want to be remembered as a poet, a peacemaker, and a philosopher who played.”
“People will come up to me everywhere and say, 'Ah, I saw you on 'Larry King,' and, 'Ah, I saw you on 'Oprah.' And it's really nice, and a lot of people say, 'Is it a pain?' And I say 'No.' And it's not annoying.”
“Even though the future seems far away, it is actually beginning right now.”
“You can't lie down in the ashes of another person's life.”
“Poetry is a beautiful way of expressing feelings - happy, sad, angry, caring. It's also a way that we share with other people, to help them with those feelings.”
“I never question God. Sometimes I say, 'Why me? Why do I have such a hard life? Why do I have this disease? Why do I have siblings who died?' But then I think and say, 'Why not me?'”
“There can be many different views of what Heaven is like, because Heaven is whatever makes each person eternally and fully happy.”
“My disease is a very rare form of muscular dystrophy, called disautonomic mitochondrial myopathy.”
“I think that someone is watching out for me, God, my guardian angel, I'm not sure who that is, but they really work hard.”
“Maybe I wanted to have kids because you want to leave behind lessons, leave behind everything that matters to you. That's how you touch the world. But I have to reconsider what it's like to leave a legacy.”
“Every year, once a year, in Maryland, I go for a week and overnight camp with about 50 to 60 kids with muscular dystrophy, all ages, seven to 21. And it is really fun. I have some great friends there and wonderful counselors.”