Family Ordeal

By J.D. Reed

ALEX, THE LIFE OF A CHILD by Frank Deford Viking; 196 pages; $13.95 Many of us have convinced ourselves that children don't die anymore, not in the latter half of the 20th century, not in the United States of America, and certainly not in the suburbs." But of course they do, as Journalist and Novelist Frank Deford piercingly recounts in this spare and vivid eulogy to his daughter Alexandra, "Alex," who died in 1980 of cystic fibrosis.

In 1972 doctors discovered that the pale and distressingly listless baby had CF. The disease strikes one in 1,000 children, is always fatal, but ravages its victims first. Girls suffer more than boys and die at a faster rate. To prolong Alex's life, Deford and his wife Carol daily had to hold her upside down and pound her chest and back to loosen the life-threatening mucus in her lungs. "Two thousand times I had to beat my sick child," her father recalls, "make her hurt and cry and plead -- 'No, not the down ones, Daddy' -- and in the end, for what?"

Between crises, Alex astonished her teachers with transcending artwork, clanked about in gaudy costume jewelry and sang tunes from Annie. The eight-year-old knew she was dying, and her bravery, tolerance and empathy for already grieving adults touched many lives.

After Alex and her father had laughed at a joke, the girl climbed into his lap and said, "Oh, Daddy, wouldn't this have been great?" writes Deford. "After we had hugged each other, she left the room, because, I knew, she wanted to let me cry alone." At the end of her last stay at Yale-New Haven Hospital, when her ordeal with CF had been compounded by arthritis, pneumonia and collapsing lungs, Alex said to a nurse, "I'm going home to die now, but don't you tell my Mommy or Daddy because it'll upset them."

Alex is more than a catalogue of prescient moments and poignant incidents.

While guilt-ridden parents, who unwittingly carry the disease, divorce at several times the national average because of CF's agonies, Deford and his wife preserved their marriage with an unspoken agreement that both would not cry at the same time. After Alex died in his arms, Deford's guilt turned to futile anger and finally to a transforming admiration for his courageous daughter. "It frightens me most," he concludes, "that I will meet some great test in my life -- maybe one for my life, as she did -- and I will not be able to do as well as my little baby girl did."

He need not fear. Alex would be proud of this moving memoir. -- By J.D. Reed