The Still Point of the Turning World

Starred review from November 5, 2012
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

Starred review from December 1, 2012
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 world...where 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.

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Starred review from July 1, 2013
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 Copyright 013 Library Journal, LLC Used with permission.