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Summary
Summary
Like all mothers, Emily Rapp had ambitious plans for her first and only child, Ronan. He would be smart, loyal, physically fearless, and level-headed, but fun. He would be good at crossword puzzles like his father. He would be an avid skier like his mother. Rapp would speak to him in foreign languages and give him the best education. But all of these plans changed when Ronan was diagnosed at nine months old with Tay-Sachs disease, a rare and always-fatal degenerative disorder. Ronan was not expected to live beyond the age of three; he would be permanently stalled at a developmental level of six months. Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting. They would have to learn to live with their child in the moment; to find happiness in the midst of sorrow; to parent without a future. The Still Point of the Turning World is the story of a mother' s journey through grief and beyond it. Rapp' s response to her son' s diagnosis was a belief that she needed to " make my world big"-- to make sense of her family' s situation through art, literature, philosophy, theology and myth. Drawing on a broad range of thinkers and writers, from C.S. Lewis to Sylvia Plath, Hegel to Mary Shelley' s Frankenstein, Rapp learns what wisdom there is to be gained from parenting a terminally ill child. In luminous, exquisitely moving prose she re-examines our most fundamental assumptions about what it means to be a good parent, to be a success, and to live a meaningful life.
Reviews (4)
Publisher's Weekly Review
Rapp's next work after her memoir about her childhood disability and foot amputation (Poster Child) delineates a bracing, heartbreaking countdown in the life of her terminally ill son. At age nine months, Ronan was diagnosed with Tay-Sachs, a rare, degenerative disease, involving the lack of an enzyme, that is always fatal, striking the parents as a complete surprise, despite the author's having been tested during standard prenatal screening. An affliction most prevalent among Ashkenazi Jews, Tay-Sachs actually has more than a hundred mutations. Ronan's "death sentence" was for Rapp and her husband, Rick, living in Santa Fe, a time of grief, reckoning, and learning how to live, and her elegant, restrained work flows with reflections and excerpts from writers and poets like Mary Shelley, Pablo Neruda, and Sylvia Plath, as well as supporters who helped her during the difficult unraveling of her son's condition. Writing about Ronan allowed her to claim the sorrow and truly look at her son the way he was. Her narrative does not follow Ronan as far as his death, but gleans lessons from Buddhism and elsewhere in order that Rapp could "walk through this fire without being consumed by it." Unflinching and unsentimental, Rapp's work lends a useful, compassionate, healing message for suffering parents and caregivers. Agent, Dorian Karchmar, William Morris Endeavor (Mar.) (c) Copyright PWxyz, LLC. All rights reserved.
Kirkus Review
A passionate, potent chronicle of the author's last months with her son. In January 2010, Rapp (Creative Writing and Literature/Santa Fe Univ. of Art and Design; Poster Child: A Memoir, 2007) learned that her firstborn, 9-month-old son, Ronan suffered from Tay-Sachs, a fatal degenerative disease, and would likely die by age 3. The Rapps had been concerned that Ronan's development was retarded; although he was an alert, happy child, he neither walked nor spoke. The author describes her moving struggle to make each day spent with her son memorable and to savor her ability to mother during the time remaining. She also considers her son's disability in light of her own congenital deformity that led to the amputation of her left leg. Though her disability goaded her to overcome all obstacles, such a path did not exist for her son. Her love for Ronan was unconditional and profound and otherworldly. In contrast to the expectations of ordinary parents, she and her son inhabited "a magical worldwhere there were no goals, no prizes to win, no outcomes to monitor." Despite her tragic loss, Rapp is fierce in her defense of the unique worth of her son's short life. He was "in his own way, perfect," and the author poses the rhetorical question: "We are not what we become, how we look, what we do--are we?" Searching for spiritual solace, Rapp and her husband attended a Buddhist retreat and cherished the words of one of the teachers: "Remember there's a whole person behind whatever physical affect presents itself." A beautiful, searing exploration of the landscape of grief and a profound meditation on the meaning of life.]] Copyright Kirkus Reviews, used with permission.
New York Review of Books Review
THE "grief memoir" is by now a well-established subgenre of autobiography, the array of recent books about dead loved ones a veritable graveyard. The best of these - Jamaica Kincaid's "My Brother" and Peter Handke's "Sorrow Beyond Dreams" - aren't just sad stories; they're attempts to write one's way out of the crisis. So it is with Emily Rapp's "Still Point of the Turning World," a memoir in which a mother's grief occasions a brilliant study of the wages of mortal love. When Rapp's son Ronan was 9 months old, it was discovered that he had TaySachs disease, an unbeatable genetic condition whose victims usually live about three years. That Rapp, the author of the 2007 memoir "Poster Child," an account of growing up with a disability, would write about Ronan was a foregone conclusion: "Just as I had written through every experience, euphoric or horrific, throughout my life, I began to document the daily happenings of my son's short life. Once I started I didn't - I couldn't - stop." The book begins with the diagnosis in the office of an ophthalmologist who discovers "cherry-red spots" on the backs of Ronan's retinas. When the doctor utters the name of the disease aloud, Rapp knows at once the fate of her child. Grief tears through her body: she screams, wets her pants, wants to vomit. In 23 chapters that read like linked essays, she recounts the following nine months, the time it takes for the information to settle in her searching, despairing writer's mind, and her gradual realization that "writing would not save Ronan. But, I thought, it might save me." A furious reader and researcher, Rapp "bristled at the lack of information and resources for parents . . . involved in the daily grind of making the short lives of their children as full as possible for two, three, maybe six years at the outward reach." Ready to master the experience intellectually - "Waiting," she writes, "was not playing to my skill set, which was about pushing, achieving" - she seeks metaphors in myth, philosophy, literature, theology. Her extended consideration of Mary Shelley's "Frankenstein" is trenchant, but other attempts are underdeveloped. She ends a discussion of Hegel before it even begins by asking rhetorically, "Didn't this dude have anything else to do with his time?" In their time, Rapp and her husband are "charged with making impossible decisions." When a hospice doctor reasons that nourishment is uncomfortable for a body no longer able to metabolize food, they decide to forgo a feeding tube when Ronan reaches that stage of physiological deterioration. Desperate for distraction, Rapp's husband prepares complicated vegan meals and organizes the forks in a kitchen drawer; Rapp tries to meditate but compares the attempt to "walking into a screaming mouth." She reads voraciously, propelled by a "frantic curiosity that would, for a brief moment, stave off the feelings of helplessness and rage." While its narrative momentum occasionally flags, the book's short laments persuasively represent the wild disorganization of the grieving mind. Rapp realizes that she must leave aside most of what she once believed about luck, pluck and the components of a valuable life. She works to jettison the idea that one can perfect a child. (Her repeated reminders that she attended Harvard Divinity School and was a Fulbright scholar provide a telling context.) True to form, she had planned energetically for a perfect pregnancy and was screened for Tay-Sachs (the test was negative). Her attempts to leave ambition aside are also ambitious. In addition to her reading and hiking regimens, she throws herself into yoga, rubs Ronan with dirt at the sanctuary of Chimayó, brings him to a hospice care facility for animals, consults an acupuncturist who declares Ronan happy but in possession of a weak spleen, then she performs Reiki on Ronan herself. While hiking the arroyo path near her house at dusk, Ronan strapped to her chest, she remembers looking at the purpling mountains months earlier, before the diagnosis, and thinking, "This is a peaceful place to die." The memory haunts her, daring her to believe she somehow triggered the disease, but Rapp is a subtle enough writer just to hint at such fears. Instead she writes about the significance of settling in New Mexico with her family, her first attempt at creating a stable home, her growing awareness that seeking and striving beget only more seeking and striving. "I finally began to pick up pieces of wisdom," she writes, "that I had been walking past for most of my life." In response to Amy Chua's inflammatory 2011 book "Battle Hymn of the Tiger Mother," Rapp wrote an Op-Ed in The New York Times, calling herself a "Dragon Mom." To "prepare throughout a child's whole life for the loss of that boy or that girl, and then to live with it, takes a new ferocity, a new way of thinking, a new animal," she writes in "The Still Point of the Turning World." "Dragon" derives from a Greek word for "to see clearly," and its symbol marked dangerous unexplored territories on ancient maps; "Here be dragons," cartographers warned. "Dragon Mothers are navigating these unchartered parenting waters, terrified, but without another choice." While Tiger Mothers push their children toward the next developmental phase, Rapp and her husband must decide when Ronan is no longer able to use his newest toys, when it is time to put them in storage and reintroduce the ones he used when he was younger. "All of his toys," she writes, "were used in reverse." Liberated from the yoke of obsessive achievement, Rapp comes into a terrible and hard-won wisdom: "Ronan taught me that children do not exist to honor their parents; their parents exist to honor them." Parenting books are written to help parents prepare for a child's future, but a Dragon Mother is given only, as T.S. Eliot described it, "the still point of the turning world." For Ronan, time exists in the present moment, vacant of episodic memory or abstract future plans. Rapp tries to mother her son at that same still point, without contaminating the moment with her pre-emptive grief. When sorrow creeps in, she writes, "I felt guilty, and then I felt guilty for wasting time feeling guilty when I need to be enjoying my son or else I'd feel guilty about it later." In a stiller moment she expresses this heartbreak differently but just as well: "In less than a year, Ronan would be blind. I could hardly imagine it - the light going out of his eyes but his heart beating on." The description becomes a metaphor for the rest of this mother's life. 'I began to document the daily happenings of my son's short life. Once I started I didn't - I couldn't - stop.' Sarah Manguso is the author, most recently, of "The Guardians," a memoir.
Library Journal Review
Rapp's (Poster Child) world falls apart when she learns that her nine-month-old son, Ronan, is suffering from Tay-Sachs disease, an untreatable genetic disorder. Instead of chronicling Ronan's day-to-day decline, Rapp here looks to such writers as Mary Shelley and C.S. Lewis for inspiration in making sense of her son's inevitable decline and death, which will likely occur before he turns three. For those facing the death of a loved one, Rapp's elegant, unsentimental meditation on grief demonstrates how a mother can survive even the worst of tragedies. Reader Ali Ahn conveys just the right tone of loving concern sprinkled with rage against life's unfairness. verdict Recommended for readers interested in a personal, yet philosophical, discussion of death. [The Penguin hc was a New York Times best seller.-Ed.]-Nancy R. Ives, SUNY at Geneseo (c) Copyright 2013. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.
