A Mother's Love for a Modern-Day Miracle
The story has been told before. A happy, successful, ambitious mother gives birth to a child with Down syndrome. She loves her baby, but she also struggles to imagine a new life with this unexpected child. In time, she comes to understand that her new life, though different, is just as valuable and happy as the one she had first envisioned. And she learns to celebrate this new life and the ideas, emotions, and dreams her child has given her.
Columbia University Professor Rachel Adams's new book, Raising Henry: A Memoir of Motherhood, Disability, and Discovery, tells this same story. And Adams's story, familiar as its shape will be to anyone who frequents memoirs, bears telling. As she explains, "We live in a world where a baby like Henry demands a story."
Henry demands a story because so many babies with Down syndrome are aborted, and the world looks for an explanation of "what went wrong" if babies with Down syndrome are born. And yet individuals with Down syndrome not only demand a story but also deserve a story. In telling the story of her family, Adams opens up the possibility of joy and goodness and wholeness for families—even liberal Manhattan families like hers— with children with Down syndrome.
Not a Medical Mistake
Part of Adams's story is her decision not to pursue amniocentesis during her pregnancy. Most ob-gyns in Manhattan strongly encourage amniocentesis, and Adams did do some prenatal screening tests that indicated a low likelihood her son would have Down syndrome. In part due to a nerve-racking amnio with her first child, and in part due to these screening results, she decided against an amnio with Henry. And although she retains her pro-choice position throughout the narrative, she also challenges the assumptions that go along with the choice to abort based upon a prenatal diagnosis of Down syndrome.
She writes, "All the attention and resources poured into prenatal testing guaranteed that Henry's world was also a place where health care professionals often saw him as a failure of medical science." And health care professionals are not the only ones, as Adams is barraged by friends, colleagues, and other mothers who ask, with some measure of incredulity, whether she had pursued prenatal testing, as if Henry should not exist if only his mother had been more prudent.
But Adams's story is not one of a medical mistake or of a mother who carelessly failed to gain crucial information about the baby growing in her womb. Rather, she tells the story of a baby who successfully forges relationships of love and care with his brother and mother and father and teachers. She tells a story that indirectly challenges the cultural narrative that Down syndrome is a tragic mistake technology allows us to avoid.
In addition to bearing witness to the value of Henry's life within their family and community, Adams also successfully weaves together her personal narrative with her academic background as the person who, literally, wrote the book on freaks—men and women whose bodies were so unusual that they often displayed them for pay. Adams gained tenure at Columbia after the publication of her first book, Sideshow U.S.A.: Freaks and the American Cultural Imagination. Her intellectual work studying freaks offers her a framework for receiving her son, and her writing is at its very strongest when she is relating Henry's story through her academic lens.