- File Size: 1350 KB
- Print Length: 240 pages
- Publisher: Open Road Media; 1 edition (February 24, 2015)
- Publication Date: February 24, 2015
- Sold by: Amazon.com Services LLC
- Language: English
- ASIN: B00RUSF9UG
- Text-to-Speech: Enabled
- Word Wise: Enabled
- Lending: Enabled
- Amazon Best Sellers Rank: #194,486 Paid in Kindle Store (See Top 100 Paid in Kindle Store)
Alex: The Life of a Child 1st Edition, Kindle Edition
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“Deford is a masterly writer.” —The Washington Post
“[Alex] captures a brave child’s legacy as well as the continuing fight against the genetic disease. ‘You come away richer for the reading,’ one critic said in 1983.” —The New York Times
About the Author
Deford’s 1981 novel Everybody’s All-American was named one of Sports Illustrated’s Top 25 Sports Books of All Time and was later made into a movie directed by Taylor Hackford and starring Dennis Quaid. His memoir Alex: The Life of a Child, chronicling his daughter’s life and battle with cystic fibrosis, was made into a movie starring Craig T. Nelson and Bonnie Bedelia in 1986.
In 2012 President Obama honored Deford with the National Humanities Medal for “transforming how we think about sports,” making Deford the first person primarily associated with sports to earn recognition from the National Endowment for the Humanities. He was also awarded the PEN/ESPN Lifetime Achievement Award for Literary Sportswriting, the W.M. Kiplinger Distinguished Contributions to Journalism Award, and the Associated Press Sports Editors’ Red Smith Award, and was elected to the National Sportscasters and Sportswriters of America Hall of Fame. GQ has called him, simply, “the world’s greatest sportswriter.”
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Frank Deford is an excellent and prolific writer of both fact and fiction and who makes personal to the reader every event he shares of Alex's life and death. Especially her death. Perhaps he didn't mean to make her death more poignant than her life, but it would be impossible to play it down. He paints nearly every hour of that last day of her life so vividly that I wondered if he was taking notes as it happened; he did, after all, keep a personal journal (no, I don't believe that he kept a notebook by the side of his dying baby's bed, only that he wrote it in such detail that it was as if he had done so.) These days, most people who die of lengthy, drawn-out illnesses die peacefully, only semi-conscious, doped up to the gills against unbearable pain. But though Alex might have been in pain, death did not take her peacefully. She didn't fight it, but neither did she go quietly. She was awake and aware to the very last second of her short life. As he said, she had spent so much of her little life dying that she wasn't about to miss the final act when it came. It was difficult enough to read when I wasn't yet a parent. It became even more meaningful after I became a parent. And then still more, when my daughter was diagnosed with a brain tumor.
Alex's story made me aware of cystic fibrosis, to the point that I felt compelled, once I was gainfully employed, to begin contributing a few dimes a year to the CF Foundation. It's never been very much, but neither has the foundation ever returned an uncancelled check to me claiming it was too little to accept.
Other parts of the story make strong impressions, such as her ability to act and mimic anything she saw on a TV or movie screen; she could have been an actress, or maybe a dancer, as she loved to twirl around with grace and energy, "imaginating" a world in which no one suffered pain or death or had to do therapy. The deep and serious discussions with people outside of her family circle regarding death, God and Heaven and her love of jokes and humor and silliness. Her obsession with beauty and jewelry, and the outrageous insensitivity with which she was treated several times by cold and heartless doctors. Fortunately, I can say that today, through my own experience with doctors and hospitals, the medical staff in the pediatric departments treat their young patients with great respect and compassion.
We could wish that ALL types of childhood ailments were written about as beautifully. There are other illnesses and disabilities that are just as deadly. He states at one point that "some diseases, even some fatal ones, don't put too many demands on the family of the patient." I felt like that wasn't quite a fair statement. If a loved one has a disease, particularly a potentially fatal disease to one's child, the demands of just living day to day with the knowledge that you will never be able to take for granted your child's good health is a pretty difficult burden to carry, not to mention the 'round-the-clock effort devoted to simply making the child comfortable. I do hope that I'm mistaken in his meaning of that statement. I can't imagine he would truly intend to dismiss other fatal illnesses children suffer as being easier to deal with.
But then really, this story isn't really about sick children. It's not even about cystic fibrosis; it is about Alex, and there is only ONE Alex Deford. I know that there is, as he says, no value in losing your child. You don't gain anything meaningful from it. But because the rest of us have had the good fortune to stumble onto his story of Alex, many, many thousands of others have found meaning in their own lives as a result of Alex's life, however brief it was. The CF Foundation has also benefited. So, thank you Alex, for living, and thank you, Frank Deford, for sharing your daughter with the rest of us.
This book is brilliant and heartbreaking and beautiful. There's no gentleness in Alex's death and sentimentality in DeFord's writing, and the book is exceptional for that lacking.
It's hard to read; I cried straight through the last 20% of it. But I feel as though I'm a bit better of a person for knowing about Alex.