An emergency room doctor and essayist tells the moving story of how he came to terms with being the father of a child with Down syndrome.
When doctors first told Austin (Something for the Pain: One Doctor's Account of Life and Death in the ER, 2008) and his wife, Sally, that their newborn daughter Sarah had trisomy 21, the couple went into shock. Neither could fully acknowledge that they had created a life that was anything less than perfect. Bonding with the child proved difficult at first, not because Sarah was a difficult baby but because the couple could not see themselves—or traits from their families—in her. They only saw the “simian crease” on Sarah’s palms that marked her as “abnormal.” The author and his wife also found they had to deal with the prejudices of others—e.g., the senior resident at the hospital where Austin trained who suggested that a Down syndrome child would be functional enough to “make a good pet.” Seeking to understand Sarah’s otherness, Austin explored the history of Down syndrome, the philosophical writings of Locke and Montaigne, and the art of the 15th-century Flemish masters. He discovered that the negative feelings he and others had toward his daughter were as much historical as they were a product of a society that scorned difference. As Sarah grew up, so did Austin. He began to see his child as a self-aware being who struggled with her limitations rather than a set of chromosomes gone awry. Sarah made the most of her abilities in events like the Special Olympics and gracefully accepted her fate to live as a member of a group home. This tender, bright and flawed child showed how being different enhanced her humanity rather than detracted from it.
A poignant and candid father’s memoir.