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Book Notes

March 3, 2011

Book Notes: Author's loss is reader's gain

Several weeks ago I wrote a column praising a novel by Frank Deford called “Bliss, Remembered.” Deford is best known as a sportswriter for Sports Illustrated but his elegant prose can transfer to any subject matter. After one of my friends read the column he recommended one of Deford’s older titles from 1983 that was totally unrelated to sports. It ended up being the most touching, heart-wrenching book I’ve ever read.

In “Alex: The Life of a Child,” Deford describes the life and death of his daughter Alex, who suffered from cystic fibrosis. She lived a little more than eight years. The premise was so sad I didn’t think I could make it through the entire book. But my friend told me the ending was uplifting so I hung in there. It was worth every page that I read and every tear that I shed.

For those that don’t know, cystic fibrosis is a chronic lung disease that usually affects young children. It causes a thick, sticky mucus to build up in the lungs and digestive tracts and can often result in death at an early age. For a child to be inflicted with the disease both parents must carry the defected CF gene and usually don’t know it. When Deford wrote his daughter’s story most children with CF died in infancy.

Today there has been enough advancement in research and treatment that many sufferers survive into adulthood, and even marry and have children. In one sense the title of Deford’s book is a bit misleading.

The narrative is about more than just Alex. She was a brilliant little girl who had a zest for life, and a maturity that extended well beyond her pre-adolescent years. But her life is only part of the story.

Deford leaves no stone unturned. He discusses what it’s like to be the parent of an adorable child who is condemned to die at an early age. He and his wife had to literally pound Alex every morning to get the mucus out of her lungs. That routine was followed by a half hour of medication that they often had to coax Alex to take. Then there were the unscheduled visits to the hospital that often became routine.

Can you imagine having to “torture” your child every day of her life? Or dropping everything to rush to the hospital?

Or the “guilt” that would consume most parents even if they unknowingly carried the gene that afflicted their daughter? It’s no wonder that the stress of dealing with childhood maladies such as cystic fibrosis can destroy even the best of marriages.

And how about the reaction of the healthy siblings who grow up with a lack of attention while still instinctively being the protector and idol of the younger sister?

How do parents make sure they’re not forgotten, or, when the time comes, to tell them that their sister has died?

It’s all very heavy duty. Fortunately, the book is not all about death. It focuses as much on life and how Alex made the most of it. While she had to deal with an hour of “pounding” every morning, and an additional half-hour of medication, her parents made every effort to see that she lived as normal a life as possible. She traveled, played games, and attended school regularly. You cannot help but love Alex. There are so many instances that leave you tearyeyed simply because she was a magnificent human being.

If her mother ever grew sad and was about to lose her composure Alex would deliberately become difficult and obnoxious to get her mother refocused. Once, when her father was about to cry during a painful procedure to repair a collapsed lung, she made the doctor stop for a minute so she could wipe the tear from her dad’s eye.

For Deford, writing “Alex” must have been a catharsis.

He was able to relate the difficulties that a family with a disabled child must face yet could deal with because of the joy their child brought to their lives. I know several people with disabled children in Cooperstown and they all seem to have an upbeat and appreciative attitude towards life. When you think about it it’s really not surprising. People with disabled children never take things for granted. For those of us fortunate enough to have perfectly healthy kids this book will make you appreciate that fact even more.

Deford suffered a personal loss 30 years ago, but by sharing Alex with us turned it into our gain.

We can all be grateful for that.

THANKS to Fred Doubleday for recommending the book and donating it

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