In Emily Rapp’s powerful new memoir, “The Still Point of the Turning World,” the “worst possible news” arrives right in the second sentence: “our son, Ronan, then nine months old, had Tay-Sachs disease, a rare, progressive and always fatal condition with no treatment and no cure.”
But you should keep reading. Rapp has written a beautiful and passionate elegy for her son, a book that offers deep wisdom for any reader. In poetic language that is always grounded in the reality of her family’s day-to-day effort to cope with unimaginable pain, Rapp journeys through the terror of hearing Ronan’s diagnosis — “his death sentence, really” — to the slow, painful acceptance of death:
“Tucked inside the moments of this great sadness — this feeling of being punctured, scrambling and stricken — were also moments of the brightest, most swollen and logic-shattering happiness I’ve ever experienced,” Rapp writes. “I realized you could not have one without the other, that this great capacity to love and be happy can only be experienced with this great risk of having happiness taken from you — to tremble, always on the edge of loss.”
Part of Rapp’s initial shock comes from the fact that she had been tested for Tay-Sachs while pregnant and her results came back negative: not a carrier. She later discovers that only the nine most common mutations are covered in the standard Tay-Sachs screening; Rapp and her husband were unknowing carriers of a different, more rare mutation. “Never having been one to believe that statistics were on my side,” Rapp writes, “. . . I did everything to cover all the bases, get the results, to know.”
She reflects upon “our hopeful delusion that being good people might keep chaos at bay. But chaos finds everyone.” Fewer than 20 children are born in the United States with Tay-Sachs per year; like Ronan, most of them are “born to parents who didn’t know they had anything to worry about.”
The book is not a day-by-day account of Ronan’s demise but instead a series of meditations on life, death, and acceptance. “How do you parent without a future?” she wonders, a theme she returns to several times in the book. “For parents of terminally ill children, parenting strategies incorporate the grim reality that we will not be launching our children into a bright and promising future, but into early graves.”
Although “[t]his was absolutely depressing,” she writes, “. . . the experience of being Ronan’s mom was not . . . without wisdom, not without . . . a profound understanding of the human experience, which includes the reality of death in life that most parenting books and resources fail to acknowledge.”
Rapp finds that “parenting without a future” is a radical act, focused not on improving one’s child or preparing him for adulthood, but simply being with him, loving him. “Sitting with Ronan on the couch I often thought, How can I make this moment more precious? and then I’d realize with a sense of panic that no additional meaning needed to be sought or found. This was all there was.”
This wisdom is something she began to intuit when she was just a child. Rapp was born with a congenital disorder that led to the amputation of her left leg when she was 8, an experience chronicled in her previous book, “Poster Child.’’ She coped by pushing herself to achieve and be an inspiration to others.
As a young girl she was quoted in her local newspaper saying, “If you believe in yourself, you can do anything,” and she did: She skied, she biked, she swam. But eventually all the striving began to wear on her psyche. As an adult she began to question the “pursuit of happiness” itself, the never-ending, rarely questioned American quest for improvement. “People get sick with this idea of change; I have been sick with it,” she admits. In Ronan’s presence, the hollowness of this hunger for perfection finally becomes real to her.
There’s no avoiding it: “The Still Point of the Turning World” is a heartbreaking book about every parent’s worst nightmare. But it is very much worth reading. It’s neither a horror story nor a trite tale of triumph over adversity. “What can be learned from a dying baby?” Rapp asks at one point, as if daring the reader to answer. There are no tidy lessons here, but instead a dark, beautiful sky full of possible constellations of meaning, threads of resonance on the subjects of life, death, healing, illness, friendship, family, grief, and love.
Ronan was almost 3 when he died on Feb. 15, after the book went to press, but it’s clear the lessons he left behind came from his life and not from its end. “Ronan taught me that children do not exist to honor their parents,” she writes, “their parents exist to honor them.” Emily Rapp has done that and much more in this beautiful tribute to Ronan’s rich and meaningful life.Buzzy Jackson is a research associate at the Center of the American West at University of Colorado at Boulder and author of “Shaking the Family Tree: Blue Bloods, Black Sheep, and Other Obsessions of an Accidental Genealogist.” She can be reached at firstname.lastname@example.org