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.
About the Author
A former Fulbright scholar and graduate of Harvard Divinity School, Emily Rapp is the author of Poster Child: A Memoir. She is the recipient of a Rona Jaffe Writers’ Award, a James A. Michener Fellowship at the University of Texas-Austin, and the Philip Roth Writer-in-Residence fellowship at Bucknell University. She is currently professor of creative writing and literature at the Santa FeUniversity of Art and Design and a faculty member in the University of California-Riverside MFA Program. Her writing has appeared in Slate, Salon, and the New York Times.
ABSOLUTELY LOVED IT
Emily Rapp has survived a birth defect and didn’t want to take a chance when she decides to get pregnant. Her and her husband has genetic testing to make sure that her child wouldn’t have to go through what she went through as a child. All except that those tests weren’t developed enough to test for the type of Tay-Sachs her son was born with. This memoir weaves in quotes from familiar authors like Mary Shelley, Sylvia Plath and C.S. Lewis. I had no idea that Mary Shelley was a feminist and had such an interesting life! These quotes and insights put losing a child into a new light.
The story that Rapp tells should be filled with despair, but she does present everything in a positive light. If you know your child only has a short time on this earth, you should do everything you can to live in the moment and not dwell on what will happen tomorrow. She does prepare for the inevitable and with the help of hospice she makes the seemingly impossible decisions. even though your heart will break, this really is an uplifting story.
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