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The Still Point of the Turning World, by Emily Rapp
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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.
- Sales Rank: #352364 in eBooks
- Published on: 2013-03-07
- Released on: 2013-03-07
- Format: Kindle eBook
Most helpful customer reviews
86 of 97 people found the following review helpful.
Not the book I thought I was buying
By Booky Galore
The book is actually comprised of literary paragraphs, with heavy references to philosophers and writers, but I had trouble finding actual narrative passages about Ronan, whose story I very much wanted to read after hearing the author interviewed. I cannot imagine the pain this mother went through, and she does write about that, but everything is framed in literary and philosophical context. The interview I heard was very powerful; Ronan's simple story, without intellectual trappings, is profoundly compelling. I wished the author had written as she talked. Reading this book was a bit like viewing an artistic masterpiece in a baroque and overwhelming frame that diminishes the seminal, powerful painting inside. Readers should simply be aware of the book's content; if they value literary essay-writing and philosophical discourse, this is the book for them. If they are interested in the specifics of Ronan's struggle with Tay-Sachs, it is intermittently present, but harder to find. The mother does not write about his actual death at all, after raising some searing abstract questions about how to allow a Tay-Sachs (or any) patient to die; so the reader hasn't a clue about what decisions the family made about Ronan's final care. The narrative simply falls off in midstream. That said, the mother/author certainly has every right to tell her story in her own way.
25 of 26 people found the following review helpful.
Synopsis in Vogue was a little misleading
By Kathleen Hartmann
The January 2013 issue of Vogue has a synopsis of The Still Point of the Turning World. After first explaining how the author's son Ronan was diagnosed with Tay-Sachs (a terminal, degenerative, hereditary disease), the synopsis sketches the rest of the book as a very detailed account of the author's day to day life with her son and her husband. I thought after reading the Vogue synopsis that the book would show the reader the consequences of whatever interventions the author and her husband chose to pursue or not to pursue, as well as provide insights into the author's relationship with her husband during the course of their journey to the end of their son's life. Instead, the book focuses on the author's own musings on grief as she turns to her favorite works of literature to help her make sense of her the inevitable and devastating loss of Ronan.
This book is well written and a fast read. It does include a few beautiful moments between the author and her son. I particularly loved the details of the author hiking with her son, feeding him avocado and ice cream, and sitting on the couch listening to opera with him. But, I wish there were more of these moments. I also wanted to know more about how Ronan's diagnosis affected the author's relationship with her husband. The Vogue synopsis states that she wanted to have another child, but her husband did not. The book itself never mentions this. Finally, the author talks about how they only want the most minimal of interventions for her son and that they planned on declining a feeding tube (kiddos with Tay-Sachs eventually lose their ability to eat orally).
As a mother of a child with a life limiting disease on home hospice care, I was hoping for more details about the author's days with her son. I wanted to see the ups and downs, rather than being told generally that in the midst of great sadness there were moments of supreme joy. I wanted to know the stress on their marriage and how they stayed strong. And, I wanted to know what happened when they declined the feeding tube. My son is on a feeding tube and there are a lot of problems with it. I understand why someone would not want a feeding tube. But, I also don't think I could handle watching him slip away faster. I understand the agony of the choices you have to make when you have to weigh quantity of life versus quality of life. I wanted to see what happened when the day finally came to make a decision about the feeding tube or another intervention and if the author would be able to keep her resolve to use only minimal interventions. I wanted to know how she felt and struggled with the decision(s), because there isn't a right answer and, in my experience, no matter what choice you make, you always second guess it.
37 of 43 people found the following review helpful.
More a meditation on grief, less a story
By S. Rudin
When I picked up this book, I expected a story: the facts, what it's like to live with a terminally ill child; what happens to him day-to-day and week-to-week and month-to-month; what it's like to interact with one's spouse, siblings, parents, friends, strangers, in such a consuming situation; what the person actually DID during that time. The book, however, contains very few such "facts", and instead focuses on what the author THOUGHT about and the insights she earned while struggling through her feelings and her "new" life. She's obviously highly intelligent, and I enjoyed her many references to literature and philosophy. However, personally, I prefer memoirs to contain detailed descriptions of actual daily life, and less abstract thought.
The book seems, at its core, to be a collection of thoughts and theories and words that are meaningful to the author, and therefore could prove meaningful to other people actively grieving or having some similar frame of reference. It may have been just too painful for her to actually describe what happened to her son, all of the things she had to move through and be present for, and I can definitely forgive her for that. Perhaps she was correct to teach her writing students that distance and objectivity is needed before a writer can faithfully describe a painful, emotional experience from his or her own life.
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