The gripping story of science writer and teacher McDermott’s first year as the mother of a disabled child.
Her son was born in July 1990, and practically as soon as he popped out of the womb his doctors and parents knew something was wrong. His parents named him Nathaniel, although McDermott had suggested they might want name him Gabriel instead—in case he needed a guardian angel. Nathaniel had Apert syndrome—a rare craniofacial abnormality. The specialist who examined Nathaniel at Boston Children’s Hospital had seen only three children with Apert in 40 years of practice. McDermott and her husband called parents of other Apert kids, and from them they learned that such children generally led pretty normal lives—they weren’t retarded, just disfigured, and they had to sustain some teasing and a lot of surgery. Some of the Apert parents whom the McDermotts came in contact with divorced, in large part because of the strain of handling an Apert kid, but the McDermott’s marriage seemed only to be strengthened by the ordeal. Her account is filled with touching snapshots of Nathaniel’s indomitable spirit and his parent’s unflagging hope (such as her description of the time she read the seven-year-old boy a book about disabled people and then asked him if he knew anyone who was disabled—and he named one friend who was in a wheelchair and another with a broken arm). Nathaniel apparently did not see himself as handicapped in any way. McDermott’s reflections on strangers’ reactions to the visibly disfigured Nathaniel are also moving: her son, she writes, acts as “an informal Rorshach test for character”—if people take to him, they’re golden, if they recoil in fear, they’re not.
Although not a story to be bestowed upon expectant mothers at baby showers, McDermott’s courageous tale will prove riveting to most readers.