Virtually every page of Life as We Know It: A Father, a Family, and an Exceptional Child resonates with love as a brilliant, sensitive, well-educated father of a Down syndrome child writes a book for the express purpose of representing the interests of a child who cannot, and perhaps never will be able to, represent himself adequately. The ethical base from which Michael Bérubé, a celebrated figure in critical theory and a political activist in much of his writing, works will be immediately apparent to anyone who reads this admirable account of coping with heartbreak and conquering it through love.
A great deal of the book is a personal memoir about the aftermath of James Lyon Bérubé’s birth in September, 1991. The delivery was difficult. The newborn, its umbilical cord wrapped around its neck, was purple from oxygen deprivation. A nurse attending the birth remarked that the baby looked “downsy” around the eyes.
Once the umbilical cord was cut and oxygen administered, the baby’s color improved. Jamie came back to life, but he did not cry. Both parents instantly faced the possibility of losing the child, whose heart was defective and who had no sucking reflex, making it impossible for him to nurse. This difficulty was exacerbated by a twenty-degree bend in the baby’s neck.
Michael and Janet’s older son, Nick, at five was a uniquely gifted child who had followed the course of his mother’s pregnancy with considerable interest. When the sonogram revealed that the fetus was a boy, Nick was excited at the prospect of having a brother. He had awaited the day of his brother’s birth with happy anticipation. Now Michael, still reverberating from the shock of becoming the father of a Down syndrome baby, had to fetch Nick from a friend’s house and tell him that his brother was not quite what Nick had anticipated.
Sandwiched into the poignant but never sentimental details of Bérubé’s personal memoir is considerable information about the causes and history of Down syndrome, chromosomal information to which the parents of most Down syndrome babies are exposed almost immediately after the birth of a child with this condition. Bérubé also intermixes considerable literary reference and philosophical insight with the purely personal parts of his narrative.
Trained in English, it is not surprising that Bérubé addresses some linguistic concerns relevant to Down syndrome. He writes, “words and phrases are the devices by which we beings signify what homosexuality, or Down syndrome, or anything else, will mean. There surely were, and are, the most intimate possible relationships between the language in which we spoke of Down syndrome and the social practices by which we understood it—and refused to understand it.” That this condition was for years called “mongoloid idiocy” bestowed an immediate, and quite unfair, stigma upon the condition.
What followed from such a designation was draconian medical advice given gratuitously and universally to the parents of Down babies. Most of them were told that there was little hope for their child and that institutionalization was the most sensible course to follow. Parents were also advised not to grow too attached to their Down babies, whose life expectancy was extremely limited.
As Bérubé points out, the predictions traditionally given to parents of Down babies, themselves severely stressed at the shock of having a newborn with this condition, were self-fulfilling. If a Down baby—or, for that matter, any baby—is isolated from its parents and put into a facility ill-equipped to give it either the care or intellectual stimulation it should be receiving, the result will be a child whose development is severely limited. If medical intervention is not available when sleep apnea or other emergencies threaten such children’s lives, obviously their life spans will be abbreviated considerably.
Michael Bérubé and Janet Lyon never considered committing Jamie to an institution, although, because of the specialized care he needed initially, they did have to leave him in the hospital’s intensive care unit (ICU) for three weeks after his birth. This was a considerable deprivation.
Because the baby was hooked up to tubes through which he was nourished and given oxygen, neither parent could hold him and nurture him in the way the parents of newborns usually do. Bonding in the traditional sense was delayed. The parents and Nick had to settle for visiting Jamie regularly, talking to him, and hoping that the outflowing of love they felt for him would in some way be communicated to a child whose life...