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Johnny's Journal, Part Forty-Six: Mattie Stepanek, Other Things... by Karen Lynn Vidra, The Texas Tornado
Thursday, March 9, 2006
Rated "G" by the Author.
Johnny writes about a book he got at the school library, and why he feels that he can identify with the author in question.
I got a book today at our school library that I have already started to read. I have already read several chapters, and it looks like it is going to be very good.
The book in question is called "Just Peace: A Message of Hope", and it was co-written by Mattie J.T. (Joseph Thaddeus) Stepanek and former President of the United States, Jimmy Carter. The reason why it was written by Jimmy Carter as well as Mattie was because Mattie died before the book could be finished. He died on June 22, 2004, less than one month before his fourteenth birthday, which would have been on July 14.
Mattie Stepanek was known for his six books of inspirational poetry, poetry that reflected his innermost thoughts and feelings about different issues, world events, his experiences of living with a rare form of muscular dystrophy (dysautonomic mitochondrial myopathy) that caused him to live life in a power wheelchair and hooked up to a respirator in order to breathe, and childhood days. Despite the odds against him, he was a regular kid who wanted peace on earth; he went out of his way to try to make that happen.
He was the Youth Ambassador for the National Muscular Dystrophy Association; it was through his work with the MDA that he met many influential people, people like Oprah Winfrey, Jerry Lewis, Ed McMahon, Billy Gilman, Jimmy Carter, and others. He had been on numerous television and radio programs, talking about his life, muscular dystrophy or any other neuromuscular disease, and his strive for peace. He wrote six bestselling books, and he started writing poetry at the unbelievable age of THREE. It was obvious even back then just how smart he really was.
I got to meet Mattie J. T. Stepanek about four years ago at a MDA function. He was there to speak; what he said really moved me, and it was obvious just how full of LIFE and COURAGE he was. He was very nice; when he talked with me, he gave me a sense of hope, and all of a sudden, I didn't feel so alone. He told me that I could do whatever I wanted in life, and that I was in control of my own destiny. He said that God let me live as long as I have for a reason and that I could accomplish great things in life. He also met my mom and dad, and they were enamored with him, too, almost as much as I was, if not, even MORE so.
Seeing Mattie in person made me think of my ownsituation. I have muscular dystrophy as well, and like Mattie, my life is often fraught with uncertainty and unpleasantries. I have had to spend many times in the hospital for tests, treatment, or whatever; there have been times where I've nearly died.
I have had to resort to using supplimental oxygen (nasal canula) as my lungs and heart have gotten weaker, and it is a sure sign that my disease is advancing. I need so much help with getting dressed, eating, getting from place to place, and with brushing my hair and teeth. It is really getting to be a pain. I also have to be turned over every two hours in bed, so I don't get painful bedsores or infections. I have to have physical and occupational therapy every week, and I have to see my doctors at least several times a month, to make sure that all is going well with me.
Living with something like MDA is a major hassle because my future is very uncertain at best. I have already outlived the doctors' predictions by EIGHT YEARS: I was not expected to live beyond the age of five! I am now thirteen years old.
I just hope I live long enough for a cure to be found for MD in my lifetime; I'd love to get out of my wheelchair; I'd love to get back to doing things I could do before my muscles got weaker. I would love to get married; have kids; and get old. As it stands right now, I don't have that luxery.
~Written by Johnny Sandusky, Thursday evening, March 9, 2006.
I'd better go; storms fixin' to move on in..can hear thunder, see lightning flashing in the distance. My weather radio is going off. Uh-oh. NOT good. Gotta' go!
A warm compassionate write Karen, I am a big fan of Mattie's poetry and have all of his books, has Johnny ever tried his hand at poetry?
love and peace, Carole
Johnnie and Mattie are both heroes in my book, as both show us how we
are capable of overcoming insurmountable odds with the the Grace of God !
Mattie was light years ahead of his time, an angel in disguise !!
And he was right, we can do anything in life if we believe, and there is a valid reason for everything and everyone existing in life !
We are all integral cogs in the Daisy Chain of Heaven
Imprints of the Almighty !!
Love and Blessings
Peter
Johnny identifies with Mattie, because he has one of the forty-three neuromuscular diseases; Mattie accomplished so much good in his short time on Earth. Perhaps Johnny will live to see a cure for MD in his lifetime...I hope so. Terrible, for children to suffer.
An excellent, compassionate book report; if I were his teacher, he'd get an A+.
As Johnny's creator, you get the A+. Top drawer writing! BRAVA!
