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Zachariah Kupfer was six months old when his parents received the first diagnostic confirmation that something was wrong: ""developmentally delayed, etiology unknown."" He couldn't hold his head up, didn't learn to sit or feed himself, and never acquired even the rudiments of language--though he could smile when he recognized family members and had some passive language skills. For two years the Kupfers struggled to fit Zach into the family, which included a daughter, normal in every way, who was four when Zach was born. This is primarily about the pain of coping on an everyday basis with a child who cried every time he was put down and would always have to be cared for like a newborn--until, to save their marriage and their sanity, the Kupfers finally decided to place Zach in a residential-care facility. Not long afterward, he began to deteriorate--more spasticity, less head control, eventual blindness--and the doctors were able to recognize that he suffered from a rare degenerative brain disease carried in the recessive genes of both parents, who were descended from a certain Jewish East European village. The expectation is that Zach, now five, will not live a normal life span; his family takes him home about once a month and intermittently visits him in his far-away facility. There's no traditional fanfare for courage here--just a massive sense of heartache that some will even interpret as whining. But in demonstrating the overwhelming frustration of caring for a profoundly retarded child, Kupfer has probably struck a blow for realism in the de-institutional movement--without, however, the reformist fervor or resonance of Josh Greenfeld's A Place for Noah.

Pub Date: Feb. 19th, 1981
Publisher: Delacorte