Life As We Know It

by Michael Bérubé
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Last Updated on September 5, 2019, by eNotes Editorial. Word Count: 325

Life as We Know It by Michael Bérubé is as much a memoir as it is an advocacy for better treatment of children with disabilities. In the book, Bérubé recounts the myriad of challenges he faced raising a child with Down syndrome. However, his challenges pale in comparison to what his son Jamie had and has to go through in life as a person with the syndrome.

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The book details the various elements in American society that create obstacles for Jamie in his path to a normal life. For instance, Jamie had to live within the strict guidelines of insurance policies that prevented him from receiving the full potential of medical technology and practice. He also had to undergo various medical treatments that alienated him from his peers, who could not understand the type of challenges he faced daily. From a societal point of view, negative stigmas regarding people with Down syndrome made him feel "sub-human" or like a second-class citizen.

This, of course, pained his father, Michael, too. As the parent of a child with Down syndrome, Bérubé became more aware of society's viciousness in treating and perceiving individuals with disabilities. By expressing their shared challenges, Bérubé indirectly, or perhaps intentionally, articulates the foundation for future healthcare reform proposals that could be passed into law.

The subtitle of the book is A Father, a Family, and an Exceptional Child. Bérubé doesn't selfishly relate his account of being a father to Jamie; instead, he paints a portrait of the whole family's collective experience. Bérubé could have written a one-dimensional, narrow perspective of Jamie as a figure representing disability, but he shows Jamie's humanity instead. Bérubé writes an inclusive narrative in which Jaime is a part of the family regardless of what society perceives as his abnormality. Jamie is not brushed off as a medical case study or a caricature of disability—he is described as an "exceptional child."

Life As We Know It

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Last Updated on May 5, 2015, by eNotes Editorial. Word Count: 353

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.

Life As We Know It

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Last Updated on May 5, 2015, by eNotes Editorial. Word Count: 1905

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 support system was more mechanical than human.

Besides dealing with their own adjustments to living with and caring for a Down child, Michael and Janet had to deal with how Nick, sensitive and superintelligent, would react to the situation. Hospital rules forbade Nick from seeing his brother in the ICU, a rule his parents succeeded in having waived because they realized it was necessary for Nick to grow used to Jamie. Ultimately, with the promise that Nick would scrub before his visits, as his parents and other visitors were required to do, hospital personnel permitted Nick to join his parents in their frequent visits to Jamie’s temporary home.

Nick began the bonding process by drawing endless pictures of automobiles to scotch tape to his brother’s high-tech bassinet. When he expressed some doubts about having his brother come home, his father told him that such feelings are usual when a new baby arrives because the new baby will receive more attention for a while than an older child or children. Certainly Jamie’s presence in the house would require considerably more attention than a more typical newborn would demand.

The three weeks Jamie spent in the ICU, as difficult as the separation was, afforded his parents and Nick a brief reprieve, time to learn more about Down syndrome and about caring for a Down baby, time to rent the specialized equipment they would need once Jamie came home, time to settle into the realization that their lives would be forever changed by the birth of this child.

On the day of Jamie’s birth, Janet courageously announced to Michael, “This is not a stopper. We can handle this.” Her attitude all along was that if a Down baby had to be born to someone, it was fortunate Jamie had been born to them. She enumerated the advantages they could offer him as parents: Janet was a registered nurse; having just completed her doctorate in English, she had been hired to teach at the University of Illinois, where her husband also taught, giving them excellent health insurance coverage; the two of them could arrange their schedules so that someone would always be at home with Jamie. Janet’s optimism in the face of crushing disappointment buoyed Michael’s spirits when things looked darkest to him. Their relationship deepened through their shared adversity.

Janet and Michael were, however, realistically aware of the commitment that would be required of them. The night before Jamie was scheduled to be released from the hospital and brought home, they went to the best French restaurant in town for a dinner they could ill afford, knowing that such evenings out would likely be extremely rare in their immediate future. On that evening, they also arranged to rent a summer place at Old Orchard Beach, Maine, where Janet had summered as a child. They could ill afford that extravagance, but they had to afford it to give their drastically altered lives—and Nick’s young life—some semblance of normalcy.

The parts of the book that detail how these two parents coped initially with Jamie’s return to their home will probably be the most instructive and encouraging to readers who themselves have a Down syndrome baby. The course of treatment they needed to follow scrupulously involved considerable lack of sleep and much uncertainty, but they survived it and, most important, Jamie lived and developed and grew into his own being. As a personality emerged from the tiny being who had lived his first weeks in a web of tubes, his parents gained hope and were thankful for his life.

Jamie’s condition would have been detected had Janet undergone amniocentesis as well as having a sonogram. The prospective parents discussed the possibility of Janet’s undergoing this invasive procedure but rejected the possibility, reasoning that the likelihood of having a Down syndrome baby is slight. All the other pertinent information they needed was provided by the sonogram, which is not invasive and therefore unlikely to cause a miscarriage.

Also, had Janet undergone amniocentesis, which would have revealed Jamie’s condition, she and Michael would have gained little. They would not have aborted the fetus. The only difference would have been that they might have gained a little time that they could have used to teach themselves more about Down syndrome and to prepare for their baby’s impending arrival.

Much of Michael Bérubé’s past writing has been political. His frequent articles in The Village Voice have politically with pressing social issues, as have his earlier books, Marginal Forces/Cultural Centers (1992), Public Access (1994), and Higher Education Under Fire (1995). It is, therefore, not surprising that Life as We Know It is at times stridently political, focusing particularly upon governmental inaction and cutbacks in aid for handicapped people.

Bérubé points out the considerable expense involved just in the first few weeks of life for a child in Jamie’s situation. His twenty-one days in the ICU, covered quite well by his parents’ combined insurance benefits, cost upward of thirty thousand dollars. Such charges are not extraordinary in situations like this one and, as Bérubé notes, not many people have the combined insurance benefits that he and his wife have.

Bérubé also comments on the discomfort that medical people have in dealing with situations such as the one his family faced. The obstetrician who delivered Jamie never again visited with the parents. Bérubé speculates that she felt somehow responsible for Jamie’s condition or feared that the parents might blame—perhaps even sue—her.

In situations like this there is more than enough guilt to go around. Bérubé tells of how Janet, during one dark moment, feared that she was somehow responsible for Jamie’s condition because she bent over a computer for hours during her pregnancy, rushing to complete her doctoral dissertation before she had to face the demands of mothering a new baby. Rock-solid emotionally, Janet enjoyed no exemption from dark moments, from bleak periods about facing the future with Jamie.

Despite its subject, Life as We Know It is an upbeat book written by a man of admirable strength, courage, and compassion. In a way, the book was co-written by Janet Lyon because, although Michael did the actual composing, everything the book touches on was a joint effort. Janet and Michael are both pillars of strength supporting a temple of love. Within that temple dwells a child who, but for having parents like them, might have landed on humanity’s trash heap.

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.

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