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Book Reviewed by:The Still Point of the Turning World is the story of a mother's journey through grief and beyond it, re-examining our most fundamental assumptions about what it means to be a good parent, to be a success, and to live a meaningful life.
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.
Excerpt
The Still Point of the Turning World
This is a love story, which, like all great love stories, is ultimately a story of loss. On January 10, 2011, my husband, Rick, and I received the worst possible news: that our son, Ronan, then nine months old, had Tay-Sachs disease, a rare, progressive and always fatal condition with no treatment and no cure.
I had been worried for some time. Ronan was experiencing developmental delays, missing important milestones. I would rush home from work each day hoping he'd started to crawl or had said his first word. He was the same sweet, happy, gurgling baby—but that was the problem. He was the same at nine months old as he had been at six months. Our pediatrician suggested that we rule out any vision problems, so we drove from our home in Santa Fe to the pediatric ophthalmologist's office in Albuquerque.
I sat in the examination chair as the eye doctor, a short, friendly man with black glasses, played cartoons for Ronan ...
In The Still Point of the Turning World Emily Rapp examines her son's all-too-brief life - and her own reactions to it - fearlessly and with an honesty that will devastate and astonish not only other parents, but everyone who opens this remarkable book...continued
Full Review
(830 words)
(Reviewed by Norah Piehl).
Antonya Nelson, author of Nothing Right and Some Fun
A writer writes; a mother mothers. When those passionate vocations merge in crisis, more than a memoir emerges. The Still Point of the Turning World is a philosophical inquiry into the nature of faith, character, love, and dying. This book is Rapp's, and Ronan's, enduring gift of selves for the rest of us. Cheryl Strayed, author of Wild
The Still Point of the Turning World is about the smallest things and the biggest things, the ugliest things and the most beautiful things, the darkest things and the brightest things, but most of all it's about one very important thing: the way a woman loves a boy who will soon die. Emily Rapp didn't want to tell us this story. She had to. That necessity is evident in every word of this intelligent, ferocious, grace-filled, gritty, astonishing starlight of a book. Dani Shapiro, author of Devotion and Slow Motion
This memoir of extraordinary tenderness and grace in the face of unimaginable loss is searingly beautiful in the way of a sacred text. Emily Rapp certainly didn't sign on to be our guide into the deepest crevasses of the human heart, but that is what she has become. Of course this is an undeniably sad book, but don't let that stop you. It is also one of the most powerfully alive books I have ever read. Every page shouts: This is what it is to love! To risk! To lose! To bear witness! An unforgettable moral and artistic triumph. Gary Shteyngart, author of Super Sad True Love Story
Emily Rapp has written an intimate, compelling and often unexpectedly funny story that speaks to some of the most universal truths of being human. More than just a narrative, this is art, not to mention essential reading. Rachel Dewoskin: author of Big Girl Small and Foreign Babes in Beijing
Emily Rapp vows not to avert her eyes, and she keeps her promise: to the son she is losing to a rare genetic disease, to her family, and to her readers. The result is a staggeringly brilliant and heartbreaking exploration of love, literature, life, death, and belief. Rapp's language is as propulsive and beautiful as her grief is brutal, and her intellectual curiosity is insatiable. She asks the hardest questions any human being is ever forced to ask, about how we understand ourselves and our children, how we love and learn to let each other go. Reading Emily Rapp is like visiting a lush, complicated, inimitable planet. Fly there as fast as you can. Roger Rosenblatt, author of Making Toast and Kayak Morning
Written with remarkable precision and restraint, Emily Rapp's The Still Point of the Turning World takes us to the depths of grief, where almost against our will, heartbreak becomes beautiful. Sarah Sentilles, author of Breaking Up with God
Emily Rapp transforms her particular life situation—being a mother to her son Ronan who is dying of Tay-Sachs disease—into something universal, challenging readers to remember that love is all we ever have. Rapp's words will sear your heart and make you want to be a better parent, sister, partner, friend. Reading her book will change your life.At the age of nine months, Emily Rapp's son Ronan was diagnosed with a deadly disease called Tay-Sachs. The disease is caused by the lack of a vital enzyme called hexosaminidase-A (Hex-A); the result is a progressive buildup of a fatty substance in nerve cells that causes destructive neurological decline and eventually death. There is no cure. A baby with Tay-Sachs can appear "normal" up until six months, although the disease is present even in the fetal stage; at that half year point, however, any developmental progress begins to decline, and the child who could once crawl or babble is eventually unable to see, move, or even hold his or her head upright.
Tay-Sachs is a genetic disease, named for Warren Tay, a British opthamologist ...
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