Michael Berube and his wife, Janet Lyon, both English professors, had no reason to fear that their second child would be born with major defects. Sonograms detected no problem. The parents declined the procedure of amniocentesis, which would have revealed the condition of the fetus, because the chance that this invasive procedure could result in a miscarriage is about equal to the chance that one will produce a Down’s syndrome baby.
When Jamie entered the world in September, 1991, he was barely alive. Choked by his umbilical cord, he had a purple hue. His heart was defective, he had no sucking reflex, and his neck bent to the left at a twenty-degree angle. His survival was questionable.
Jamie did survive, however, in a world that often does not treat people with his condition very well. “Mongoloid idiocy,” the old name for Down’s syndrome, carried with it pejorative overtones that helped to justify the institutionalization and inadequate care that such babies frequently received. Jamie’s parents would not be parties to such mistreatment.
Rather, they kept Jamie at home with their older son, Nick, nurturing the newborn to the point that he became a real person, a child full of mischief, enchanted with life. Jamie will never have the mental capacity of his superintelligent brother, but he is being brought up in ways that encourage the development of his natural capacities to their fullest.
LIFE AS WE KNOW IT is a warm book, brimming with love but never mired in sentimentality. It stands as a testament to how two loving parents can, through sheer determination, rescue a Down’s syndrome child from a life of futility. This book was written to represent Jamie, who cannot represent himself fully but whose claim to fair treatment is that he is human, a real person.
Sources for Further Study
Boston Globe. October 13, 1996, p. N16.
Kirkus Reviews. LXIV, August 1, 1996, p. 1112.
Library Journal. CXXI, August, 1996, p. 100.
Los Angeles Times Book Review. October 27, 1996, p. 10.
The Nation. CCLXIII, October 28, 1996, p. 30.
The New York Times Book Review. CI, October 27, 1996, p. 22.
Publishers Weekly. CCXLIII, August 26, 1996, p. 82.
The Washington Post. October 14, 1996, p. D2.