![]() ![]() He wonders what obligations society has to devote public funds and taxpayer-supported research for a condition that, on average, never allows the patient to progress past the IQ of an eight-year-old. He does, however, wish to challenge people's thinking on these issues, in an effort for society to ''determine what kind of 'individuality' we will value, on what terms, and why.''įor Micheal’s part, he challenges his own personal feelings about Jamie because he knows that the vast majority of citizens and decision-makers will never have a child with Down syndrome, and thus, they will see a child like Jamie less as a boy and more as a category. Despite the fact that Michael is grateful for having Jamie in his life, he doesn't seek to judge others who might choose to abort a fetus found to have Down syndrome. He writes that his new son "has no idea what a busy intersection he's landed in," referring to the sociopolitical firestorms surrounding abortion and genetics. From a vantage point four years past Jamie's birth date, Michael writes about his experience raising a child with Down syndrome. We can handle this." And they do handle it. The first six months, the author writes, are "a thrash." "We can handle this together," Janet tells Michael. They follow an exceedingly tight schedule, without which they might lose themselves in a pit of despair. Desperate for anything that might lighten the grim situation the family faces, Michael and Janet compete with one another to see who gets Jamie to keep the most food down without spitting it up. Jamie suffers a number of health and developmental problems aside from Down syndrome and can only be fed through a nasal tube. Immediately, Michael and Janet's professional lives and ambitions are suspended, as they are required to devote every waking hour to keeping baby Jamie fed and alive. When they do, the nurses remark that Jamie "looks Downsy around the eyes." ![]() The obstetric nurses immediately administer oxygen to Jamie, eventually rousing him. The child is motionless with purple skin, suffering from a lack of oxygen due to having its umbilical cord wrapped around its neck. Her labor is short but difficult, and when she delivers her son, Jamie, into the world, Michael immediately believes the baby is stillborn. In September of 1991, Janet goes into labor. Moreover, the doctors tell her and her husband that a sonogram would reveal almost any serious birth defect or disorder except for Down syndrome. In Janet's case, she opts not to undergo amniocentesis because, at her age, an amnio-related miscarriage is just as likely as having a child with Down syndrome. Many parents, upon learning that their unborn child will have Down syndrome, choose to abort the pregnancy. Langdon Down in 1866, Down syndrome, caused by the existence of an extra chromosome, results in intellectual disability and distinctive facial features. In many cases, a pregnant woman undergoes amniocentesis, a test of the amniotic fluid that reveals chromosomal abnormalities, particularly Down syndrome. At the age of thirty-six, Janet becomes pregnant a second time. They have one child, Nick, a highly intelligent boy who scored among the top percentiles in nationwide intelligence tests. According to The New York Times, Life As We Know It is "an astonishingly good book, important, literate, and ferociously articulated." Michael Berube and Janet Lyon are both professors in the Department of English at Penn State University. American author Michael Berube’s memoir, Life As We Know It: A Father, a Family, and an Exceptional Child (1996), chronicles Berube's experience raising a child with Down Syndrome. ![]()
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