"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"--
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What would it be like to learn your baby lacks an essential enzyme and will be dead in less than three years, slowly losing his motor skills, sight, and other senses and abilities. How do you live with that grief, what does it feel like to mother that child, how do you get through the day? Emily Rapp shares her experience with us in raw and honest language.
