>> Wednesday, November 18, 2009
Today's Guest Article is by Elizabeth from The Divine Gift of Motherhood.
Mattie J.T. Stepanek was this amazing kid who just happened to suffer from a rare disorder that later came to be known as Dysautonomic Mitochondrial Myopathy. His three siblings all died by the age of four of the same disorder, and his mother was diagnosed with the adult onset form after having given birth to them. They are the only five people ever diagnosed with this particular form of the disorder.
Told from the first person, Jeni is one of the main characters of the book, as the mother who cared for her son and supported his efforts, yet Mattie is the focus. She sees him as a gift from God and is thankful for the time she was able to share with him and her other children on this earth.
From the beginning you know that he is going to die at the age of thirteen, and the suspense of the reader in seeing how he is going to live his life in between crises, and when he is going to die, is a faint echo of what you know Jeni and Mattie lived through in real life time. Jeni is very descriptive of all that they went through, but the book is much larger than that.
From an early age, Mattie defied the doctors’ predictions, so that eventually they gave up saying there was no hope and just let him go the course. He taught himself to read and write, and was so far ahead of his age peers in school that homeschooling became the best option for him. By middle school he was attending a local college for his coursework.
By the age of three he was writing poetry, and became a bestselling author. He published six collections of Heartsongs poetry and one collection of peace essays. “Heartsong” is a word he coined for a person’s essence. He believed that everyone should share their heartsongs with each other to make the world a better place. His poetry and his life work were all for the purpose of spreading the message of peace and hope.
He was the National Goodwill Ambassador for Jerry Lewis’s Muscular Dystrophy Association for three years in a row, traveling along with his all his life support equipment to give inspirational talks to large audiences and appear on television programs such as Larry King Live and Oprah Winfrey. His final project was assisting Jimmy Carter in the writing of the book “Just Peace”.
The book features never-before-published essays and poems from Mattie’s journals, as well as e-mail exchanges between him and one of his best friends, Oprah Winfrey.
I had a few reservations about the book that I feel I must disclose to the Catholic reading audience. Jeni, herself a Catholic, chose to leave an abusive marriage; divorce is mentioned but not an annulment. Mattie’s best friends are also some of the more liberal celebrities. If you are not a fan of Oprah, you might get tired of reading all of her supportive emails to Mattie. You may not agree with the choices of books and movies Mattie enjoys.
There is one story on p. 203 that gave me pause. Someone asks Mattie if they can put a “Celebrate Diversity” sticker on the back of his wheelchair. When a nurse and close friend explains to him and Jeni that it is a “gay pride” sticker and that people might think he is gay, he chooses to leave it because “God’s love includes all people”. I understand his point of view, but Jeni goes further in stating in the book, “So many people who are antigay point to the Bible to support the opinion that homosexuality is a sin. But Mattie understood that the Bible had to be read with an eye toward historical and cultural context.”
Other than that, the book is profoundly pro-life. The doctors all begged her to get an abortion; she would not. They told her to put Mattie in an institution; she chose to be his mother. She chose to let him live his life as much as he could, and went to great lengths to allow him to see his vision through. When it came to the end of his life, she allowed him the dignity to take part in the decisions about heroic life-saving measures. She and others made sure that all of his wishes were carried out when he was buried. They honored his life through continuing to carry on his message to the world.
Dutton sent me a preview copy of the book in exchange for my honest review. I have to admit that, when I read the description, I was not too excited about it. It sounded like a depressing topic, and I usually like to read to escape reality for a while. But I took the assignment and was glad I did. Other than the reservations I have mentioned, I recommend this book as a tribute to a great young soul with a message of hope and peace.
For more about Mattie and his life see his tribute website.
For ordering information see Dutton Publishing at Penguin Books.
Today's guest article is by Elizabeth from The Divine Gift of Motherhood. Elizabeth also writes as the columnist for The Long Island Motherhood Examiner.