May 23, 1988 12:00 PM

by Jacquie Gordon

The pain of reading books about dead children written by their parents—Death Be Not Proud by John Gunther, Eric by Doris Lund, Alex: The Life of a Child by Frank Deford—is inexorable. You begin to read knowing full well what to expect at book’s end, all the same full of hope that there will be a miraculous cure on the last page. Give Me One Wish is Gordon’s almost unbearably moving chronicle of her daughter Christine’s 21-year struggle with cystic fibrosis, an inherited, incurable disease. As the teenage Christine dispassionately explains to her high school classmates during an oral report in biology, “The exocrine glands keep producing thick mucus, day in and day out. Clogging up the lungs, it creates an ideal breeding ground for what doctors call ‘opportunistic organisms,’ that is, viral and bacterial pneumonias. And once these deadly organisms get a start under such fertile conditions, they multiply and multiply. The patient’s life is spent fighting them off, with antibiotics. That is the spent fighting them off, with antibiotics. That is the problem in a nutshell….” Chris’s life was punctuated by protracted hospital stays, by bleeding from the lungs, by ungovernable coughing fits, by fevers, by heart failure. She is Christmas shopping with her mother in Bloomingdale’s when her lungs begin bleeding—less than a week after being released from the hospital. She’s accepted at Emerson College and after two weeks on campus is readmitted to the hospital for two months with bronchitis, strep throat and pneumonia. As Gordon makes fiercely clear, there is little rest from the disease. Patients are reminded of it by what Chris called “thumps”—daily physical therapy that involves pounding on the chest, shoulders, back and sides to clear the lungs. They are reminded by the coughing—Chris always tried to suppress hers—by the blinding headaches from carbon dioxide poisoning, by the viselike tightening in the chest as the lungs are destroyed by disease. But Gordon, a photographer, also makes clear what an extraordinary daughter she had. Chris wangles permission to leave the hospital for her senior prom and, with her flair for the dramatic, shows up in black tails. She wins the Headmaster’s Award at Rye (N.Y.) Country Day School for “educating all of us in the most profound sense.” Through the offices of her father, a puppeteer for Jim Henson’s Muppets, Chris appears in the movie The Great Muppet Caper. This is the story of a remarkable girl fighting a hideous battle, but it is also the story of a mother and daughter coming to terms. Chris teaches her mother about punk rock, about Adam Ant, about courage. Jacquie gives Chris strength to continue. “Chris, there’s something I want to say,” the mother says to her daughter. “You seem to have less and less time when you’re free of suffering. I don’t want you to feel you have to keep on fighting for me. I don’t want you to give up…but don’t do it for me. You know how I always say life is worth living?…Maybe there’s a time when it isn’t worth it. I don’t know, but please know, Chris, I love you. If it’s ever too terrible to go on, don’t do it for me.” Needless to say, Christine fought to the finish. (Norton, $18.95)

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