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The Still Point of the Turning World

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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.

272 pages, Hardcover

First published March 1, 2013

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About the author

Emily Rapp

7 books84 followers
Emily Rapp was born in Nebraska and grew up in Wyoming and Colorado. Born with a congenital defect, her left foot was amputated at age four, and she has worn a prosthetic limb ever since. A former Fulbright scholarship recipient, she was educated at Harvard University, Saint Olaf College, Trinity College-Dublin, and the University of Texas at Austin, where she was a James A. Michener Fellow. She has received awards and recognition for her work from The Atlantic Monthly, StoryQuarterly, the Mary Roberts Rinehart Foundation, the Jentel Arts Foundation, the Corporation of Yaddo, the Fine Arts Work Center in Provincetown, and the Valparaiso Foundation. She was the Philip Roth Writer-in-Residence at Bucknell University and has received a Rona Jaffe Fellowship. Her work has appeared in The Los Angeles Times, Salon, The Sun, The Texas Observer, Body & Soul and many other publications. Emily has taught writing in the MFA program at Antioch University, Los Angeles, The Taos Writers' Workshop, University of California - Palm Desert, and the Gotham Writers' Workshops.

She is currently professor of Creative Writing and Literature at the Santa Fe University of Art & Design in Santa Fe, New Mexico.

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Displaying 1 - 30 of 316 reviews
Profile Image for Myfanwy.
Author 13 books175 followers
March 15, 2013
Chapter 22 of Emily Rapp’s memoir The Still Point of the Turning World opens with a quote from Franz Kafka, “By scribbling I run ahead of myself in order to catch myself up at the finishing post. I cannot run away from myself.”

I cannot run away from myself.

Running away from yourself is exactly what you wish to do when you experience the dying of someone you love. And imagine if the one dying is your child? You will say to me (as people have said to Rapp), “I can’t imagine that.” But you can, Rapp would argue, and you do, which is why people like her, the mother of a dying (and now, sadly, dead) child make us so uncomfortable. They represent an inconvenient truth and that truth is that we are all of us dying as we live and that includes our children, too, though we dare not acknowledge that truth. We dare not.

Rapp had no choice but to acknowledge the truth of her son’s impending death. Indeed, she faced it head on. Still, she does not spill her tears on the page. She doesn’t ask for pity. She doesn’t want platitudes or euphemism She doesn’t want hugs. And, most certainly, she does not want anyone to say to her, “I’m sorry.”

She just wants you to be present in your life and in the lives of those you love.

Reading this book brought up all kinds of complicated emotions in me. Mostly, though, what I felt was grief: for those I’ve lost, for those I will lose someday, for myself. I grieved for Ronan. I grieved for all of the children who have died and who are dying.

Grief is not necessarily a weeping thing, as Rapp shows us within this book. What it is is an animal thing. An animal thing like giving birth. Grief is uncontrollable, as is dying, as is giving birth.

My husband and I have always talked openly (in an age-appropriate way) about death with our son. We don’t say things like “passed away” or “gone to live with the angels” no matter how tempting they are. He is interested in my parents, his maternal grandparents. I show him pictures. We talk about them. Recently, I let him take out and examine several objects of my father’s that I have. A leather box. A leather key holder.

He wrote a note (with my help) to my father asking him to leave a sign if he was a friendly ghost. He placed is in the key holder and said he would go back the next day to check. The next morning, when there was no note, he was disappointed, but said it was what he expected. He did just as I have done countless times, asking for a sign from those I have loved who have died. Show me that you still exist. Show me that there is something more.

Even as he learns of these dead people, even as he falls in love with them, he also learns how to let them go. He learns how to grieve them just as his young mind begins to understand what sad means.

Yesterday, I found two photos in frames I’d forgotten about. One was of my mother as an infant and then other of a my father as a young boy. I handed these photos to my son and told him who they were and he said, “I love them so much.”

Profile Image for Josie.
25 reviews
August 14, 2013
I feel guilty not liking this book but I just thought it was OK. I wanted a more personal account of Ronan and his illness. And in fact I very much liked how the author spoke about her experience when I saw her on the Today Show, which is what prompted me to buy the book. But the book itself was a bit preachy and almost even pretentious to me, and more philosophical then I expected. It just wasn't a very personal account of what her life was like with Ronan and that is what I hoped for. It was a story about the author and how she used literature, writing, and philosophy to help her cope with her horrible situation. Not what I expected.
Profile Image for Anna.
54 reviews81 followers
February 22, 2013
How does one even begin to critique a memoir? I'm sure there are academic answers to this question, which rattled through me as I read THE STILL POINT OF THE TURNING WORLD, but I don't think any of them could help me feel less uncomfortable at the thought of making value judgements about another person's experiences and emotions. I can pick apart a novel's plot and characters with the best of them, but to do that to a memoir seems more personal. The plot, such as it is, is not of the author's creation, and the characters are for the most part outside her control. With that in mind, what more can we ask other than that she write honestly and beautifully?

In THE STILL POINT OF THE TURNING WORLD, Emily Rapp makes it both easy and difficult for her readers by doing just that: writing honestly and beautifully about her son Ronan, his diagnosis, and her fierce commitment to the act of mothering him while surviving her grief. Over the course of 250 pages, she explores both Ronan's short life and her role as his mother who will outlive him, and in doing so, she does an incredible job of exposing the shortcomings of how American's so frequently talk about life and death. For Ronan, ambition is non-existent; perfection, by many standards, is unattainable, yet how can we claim imperfection of someone who is, from beginning to end, no one less than exactly who he is?
What I was being asked to do felt both entirely instinctive and completely impossible. To live the reverse of [Mary] Shelley's Dr. Frankenstein, to love my child without limits or expectations. Years from now he would not be chasing me down, asking "Why didn't you love me?" He will be dead, and I will have been his mother. It wasn't the story of motherhood I expected to tell, but...I felt I could claim it. I had to. Firefighters who spring into the blaze to save people are not brave; they have no choice. (231)

There are times when Rapp's writing is repetitive: again and again, she circles back to the things that Ronan will never do, the circumstances under which she will never mother him, the fact that her son is dying and there's nothing that will ever change that fact or her loss. Some readers may find the repetition tiresome or annoying. I experienced it as a style, Rapp's grief swirling around her like a tornado or hurricane, with stillness and clarity in the center, at the eye of the storm.

And it's in the center of her grief, as she writes about what it means to be a person, to be alive, to live with disability and difference, to be "not normal," that Rapp's contemplative writing is at its best. She has no interest in writing an overcomer narrative, an uplifting story about how her dying son taught her how to live life to the fullest, and she rejects the idea that any meaning or purpose to Ronan's existence is reliant on it being "found" by her or anyone else.
The meaning of Ronan's life was not to teach me; we often say this about people who defy our notions of normal and I find it pathetic, patronizing, and a way of distancing ourselves from our own fragile bodies and tenuous lives. I don't believe that disabled people exist to teach people life's stories—that is not their purpose; it isn't anyone's purpose. We are not "the disabled," some shapeless, teeming mass of nonnormative bodies designed for teaching purposes, like some kind of specially designed pedagogical barbarian horde. (114)

Emily Rapp's grief is ragged and palpable, and while her writing is beautiful throughout, there were times when I presumed to wonder why she chose to write about Ronan so immediately after his diagnosis. Some of her references to and extrapolations from various texts feel forced, and some sections seem unfocused. There's no denying that this would almost certainly have been a very different and possibly more polished book had it been written with more distance.

But then, who am I to presume to think that Emily Rapp should "polish" her grief, or that she will ever find distance—whatever that means—from the death of her son? I am a childless young adult who has lived 26 years without experiencing the death of someone close to me. I am not a professional writer, someone who instinctively turns to a blank page as a map to relief from my life. And I can't help but agree with Cheryl Strayed, whose blurb for THE STILL POINT OF THE TURNING WORLD reads, in part: "Emily Rapp didn't want to tell us this story. She had to. That necessity is evident in every word of this...book."

Rapp recognizes this necessity long before we ever do, and she embraces it:
[Writing] ordered chaos, focused energy, provided a wear of "bearing up" that no period of restfulness could possible accomplish. In other words, rendering loss was a way of honoring life. ... There was nowhere to go inside Ronan's diagnosis, but on the page my mind could move, and I was for that brief period of time—an hour, four hours, three minutes, five seconds—free. (126)

THE STILL POINT OF THE TURNING WORLD is not an easy book to read—what has happened to Ronan is bullshit, plain and simple; there can be no comforting platitudes, no talk of "God's plan" or other explanations. Rapp knows that she will grieve the loss of her son for the rest of her life. At the same time, this is a rewarding book, awash with Rapp's love for her son. It's not a day by day catalogue of life with Ronan; it's an exploration of and testament to what it means to be his mother, both before and after he's died. It's meaningful and thought provoking and beautiful, and I'm glad that I read it.

February 15th via FacebookRonan passed away peacefully on Thursday, Feb. 15th at about 3:30 am in Santa Fe. He was surrounded by friends and family. If you would like to make a donation in Ronan’s memory, please do so at the National Tay-Sachs and Allied Diseases Association, who have been a huge support to Emily and her family.

I received a finished copy of this book in advance of publication via The Rumpus Book Club. Subscribe to The Rumpus Book Club for $25/month and receive one new, soon-to-be released book in the mail per month, plus access to online discussions with each month's author.
Profile Image for Heidi.
150 reviews6 followers
Shelved as 'abandoned'
February 8, 2023
Where is the line between therapeutic writing that should be contained within one’s private journal, and therapeutic writing that offers meaning and perspective to a reader? Wherever it might be, Rapp stays mostly to the left of it.

I considered closing the book forever on page 36 and 47, again on page 57, and conclusively on page 123, where I read that she used to preach in her writing classes the need to achieve objectivity before sharing difficult life stories, “otherwise these stories can be heavy loads for the reader to lift.”

I wish she’d heeded her own advice. She had me in the first few pages. Given the heart-wrenching subject-matter, I was pre-disposed to be hers. But now I feel as if I’ve been walking on my hands and knees through broken glass—not enlightened, not engaged, just confused and dizzy from all the dry redundant sermons, the circular rediscoveries of discoveries, the heavy emotional roiling that rarely seemed to cast light. The worthwhile bits, the gems and epiphanies, and I seem to think there were many of them, got lost in the vortex of what is ultimately a self-indulgent memoir of Rapp’s grief and thought process.

Tracy Kidder and Richard Todd in Good Prose: The Art of Nonfiction say the first challenge of the memoirist is to figure out how to “preside over your own internal disorder.” I wish Rapp had presided more, wallowed less. Barbara Turner-Vesselago, in her marvellous book, Writing Without a Parachute: The Art of Freefall, says the way to avoid the ego-involvement and ineffectiveness of writing self-consciously about recent events is to acquire a certain distance from what’s being written about, say about ten years.

I didn’t want to read Rapp’s journal and watch her mind “spin and spin and spin.” I wanted to learn from her hard-won knowledge and wisdom as she interpreted that experience, ten years hence.
Profile Image for Joel.
553 reviews1,600 followers
March 20, 2013
Lois McMaster Bujold, a great writer made no less great by the fact that she writes science-fiction books with covers like this, wrote one of the truest things I have ever read about becoming a parent: “It's a transcendental act. Making life… 'By this act, I bring one death into the world.' One birth, one death, and all the pain and acts of will between.”

This, from a story with spaceships and lasers in it.

When we have children, we birth potential into the world. We question ourselves, our spouses: who will this person be? What foods will he like? Will she be as smart as you? Will he inherit your sense of humor, your eyes, your smile? Will she be healthy? Happy? Everyone loves to tell you how your life is going to change after having kids, about how things will never be the same but also how you’ll discover a love you never imagined you could feel, filling you up and overflowing.

What they usually don’t mention is the fear. The knowledge that so many terrible things can go wrong. That the world can be a bright and beautiful place, but also a cold and hard one, and that your child will experience a measure of both. You can only hope it’s more good than bad. Only hope, and do everything you can to make it so.

The Still Point of the Turning World is the story of a mother for whom all those fears became suddenly, crushingly immediate. Writer Emily Rapp (author of a respected memoir about growing up with a disability that requires her to wear an artificial limb) saw her future collapse in on itself one January day in 2011 when she took her infant son Ronan to the doctor for an eye exam and learned he had Tay-Sachs disease, a debilitative genetic disorder that is always fatal, that cannot be treated or cured, only managed.

Read the rest of the (slightly revised and less digressive) review on the Barnes & Noble Book Blog.
Profile Image for Gina.
905 reviews4 followers
May 2, 2013
As a new mother myself, I cannot imagine having a child with a terminal illness. However, the rank of two stars isn't for the author's strength of character or difficult situation (she makes clear she does't want anyone's pity anyway), or the writing, which is okay (barring that she is sometimes redundant and sometimes contradictory). She gets only two stars because of her tone. I found her to be quite self-righteous, condescending, and unappreciative. For example, she throws away all of the sympathy-type cards she receives because she doesn't like the cards' messages. We get it. Your situation totally sucks (although she also says there is no "ranking" system for difficult situations). But come on--there could have been some really heartfelt words--words she needed to hear--from the individual, if only she'd taken the time to read it. I did like that she tied in writings from other authors, and I have no doubt that she fiercely loves her son.
Profile Image for Marleah.
143 reviews7 followers
August 9, 2014
I have an eight-month-old daughter and was afraid that, while reading this book, I would be in tears the entire time. Not so (and this is neither positive or negative, just a fact). Rapp writes about her son Ronan with love and truthfulness, with interludes into literature and references to poetry, as well as her own personal history.

While reading the first half of the book, I was irritated by the literary and poetic interludes, because just as I started to be drawn into Ronan's story and started to feel that crushing emotion, I was drawn back out with a reference to Mary Shelley or Pablo Neruda. As I continued reading, however, I realized that this book would be nearly impossible to read -- or to write -- without those interludes. The reality is simply too overwhelming and terrible to confront all at once. The interludes act as a coping mechanism, enabling one to recover before experiencing the next wave of despondency and helplessness.
98 reviews4 followers
April 29, 2013
My enthusiasm for Still Point of the Turning World hit peaks and valleys, much as Ms. Rapp's touching story of caring for her terminally-ill son undulates between moments of profound insight and sheer rage. But, this book epitomizes why it is I think we read books in the first place -- that search for truths through relating (or trying to relate) to the experiences of others. At least, that's why I read books, for that rare instance where a book shakes your understanding of the world and of people, and hopefully leaves you with new insights about our relationships with one another.
Profile Image for Judith Hannan.
Author 3 books24 followers
March 27, 2013
Toward the end of her exquisite book in response to her son Ronan's diagnosis of Tay-Sachs disease, Emily Rapp talks about going to a "Being With Dying" training session. She tells of being shown photographs of people dying and the "death portraits" of people who have just died. In many ways, The Still Portrait of the Turning World is like a death portrait; it is an unflinching examination of grief.

Tay-Sachs has no cure. Rapp makes sure the reader understands what this means in the opening pages. "I was standing on my heart, which was simultaneously beating in my nose ... I had swallowed my own teeth." Every parent whose child is diagnosed with a life-threatening illness has a view into an abyss of mammoth depth and foreigness. When my own daughter was diagnosed with cancer, I made periodic visits to that hell but I didn't have to dwell there because I had the consolation that my daughter could survive, which she did. Ronan didn't have a lilfe-threatening disease; Tay-Sachs is a murderer 100% of the time. Rapp descended into that abyss, spent enough time there to decorate it with the furnishings of innermost horrors and grief.

Against her own advise to herself and her students about waiting to achieve distance before telling a story of emotional upheaval, Rapp plunges in immediately. Writing was, "A net, a landing point, a dock from which to view the turbulent and troubled water without having to wade in it every moment of every day." But Rapp is not giving us her journal. She " ... went back and shaped [her] words ... wrestled with language and form." From her grief, Rapp has shaped a work of art as powerful as a painting, like Picasso's "Guernica."

But The Still Point of the Turning World is not an unrelenting lament. Rapp places her, her husband's, and Ronan's experience into a larger picture of how society deals with ill children or someone who is "other" (Rapp herself has a physical disability), the response of friends, etc. Sometimes these sections can seem too angry; Rapp acknowledges that she is angry and sometimes it is misplaced. She might recognize that she is too hard on the world outside her experience. Sometimes, her points become redundant and I had small quarrels with how she defined words like "lucky" or "sentimental". But Rapp's perspectives are necessary because, at some point, we will all be called upon to manage our own horror or respond to that of another, and Rapp has done the dissection for us to help us prepare.

There is no transcendence in this book, no moving forward (a phrase I hate) or even moving with (which I prefer). Rapp takes us to the threshhold across which Ronan will pass alone, without Rapp or we her readers. It is a powerful moment. I am grateful for the lack of distance in this book. How else could there a passage like this: Each day I picked apart my grief with a little knife; I combed through it; I boiled it in petri dishes and tried to blow it up. I sprinkled it with gas and lit a match, watched it burn, put out the fire."

Rapp's love for Ronan is as physical a presence in this book as the way his body was against hers as she carried him on walks and errands, as he sat against her on the couch as she wrote. There is so much love and tenderness. There is the joy that Rapp has that she has Ronan, that she had the experience of being his mother. At our Passover seder this year, my cousin brought his three week old baby and I held him as I led family and friends through stories of freedom and liberation. Liberation is not about being unweighted but about receiving whatever weight is placed in your arms. I felt every 9.5 pounds of that baby. The thought of not carrying him constricted my muscles and my heart and I thought of Rapp.

Rapp relates her experience with such beauty, poetry, originality and both emotional and literary intelligence that, while I felt the pain of her story, I was held there by quality of the art. I can only hope that Rapp will write more.
Profile Image for Bridgett.
220 reviews3 followers
March 17, 2013
I was about 3/4s of the way through Emily Rapp's moving memoir about her son's life and thus his dying when my daughter was diagnosed with Type 1 Diabetes. You never know exactly how much the words, the experiences, the intelligence in a book affects your own life, your own experiences, but I think I can say that ultimately this book probably changed the way I looked at the illness. Rapp's book is alive with great compassion and also an indictment of our very modern way of looking at life and death. She brings in poetry and literature in a way that is edifying and also gives the reader many reading paths to follow. I have read a lot about Buddhism lately, and Rapp's changing and moving philosophy of what it means to live more so than what it means to die has given me a better way to look at my own life and the lives of my children. I am especially moved by her discussion of value and dignity in all lives and how often we do, without realizing it, put values on lives. Like all great books, this book is beautifully written and explores a wide range of ideas, coming to rest in the liberating comfort of not knowing.
Profile Image for Kirsty.
2,681 reviews177 followers
April 11, 2022
I have wanted to read Emily Rapp’s The Still Point of the Turning World for quite some time. I was reminded of Rapp’s memoir when reading Heather Lanier’s Raising a Rare Girl, which tells of her experiences with her daughter’s very rare condition, Wolf–Hirshhorn syndrome. Rapp’s book revolves around her young son, Ronan, who was diagnosed with a degenerative, and always fatal, disorder named Tay–Sachs disease when he was less than a year old. In The Still Point of the Turning World, Rapp recounts her ‘journey through grief and beyond it’.

Ronan, the only child of Rapp and her husband, lived a happy early life in New Mexico. However, his parents became concerned that he was not meeting his developmental milestones. Ronan’s paediatrician believed that it might be a simple issue with his vision. During a trip to the ophthalmologist, ‘cherry-red spots on the back of his retinas’ were found; this is a red-flag for Tay–Sachs. His parents were given his diagnosis when he was nine months old, and were heartbreakingly told that there was no cure, and no treatment for his condition. The disease stops nerves from working properly, and those diagnosed rarely live past the age of four. There are many stages of the disease: ‘… paralysis, blindness, deafness, spasticity, seizures, death.’

Rapp describes, in vivid prose, her panic at this moment: ‘The situation didn’t fit; it wasn’t right. My brain was broken; my heart was stopped. How could I still be alive, in this room, having been given this knowledge? It was grotesque and absurd and could not be happening.’ Later, she recalls: ‘I stopped wailing, except at night, when I would cry myself into a pit and then sleep there, shallowly. When I woke up, I felt as if I’d spent the night in a cold, skinny ditch by the side of some lonely road. Every morning the sky was bright blue… the trees along the walking trail outside our house still bare, everything brown. The world blue-brown but black, like a bruise. We felt beat up, pressed down. The world had a wild, new, terrifying clarity.’

Rapp begins her memoir: ‘This is a love story, which, like all great love stories, is ultimately a story of loss.’ Prior to his diagnosis, she tells us, she had many expectations for her son, and what he would go on to achieve in his long and healthy life: ‘Like his father, he would complete crossword puzzles in record time. Like me he would be physically fearless and an adventurous eater. He’d be fun but levelheaded, loyal and fair and smart… Maybe he would invent something world changing or build space rockets or become a fashion designer who made clothes from recycled trash.’

Throughout, Rapp displays all of her vulnerabilities. She writes with such honesty and clarity, despite her immense pain: ‘My time with Ronan was short and beautiful and shot through with light, laughter and, above all, a kind of love that stripped me to the bone.’ She describes at length the impossibility of reconciling her happy baby with his lack of future. She reveals: ‘Even though I loved being with Ronan, it was also true that when I looked at him, I felt myself sliding into the place where crying would only dig a deeper, darker pit.’ The way in which she describes her son, and her grief following his diagnosis, is beautifully evoked: ‘I allowed myself to imagine Ronan in a landscape of light and continuous revelation, his life lived as a series of singular moments.’

Throughout, I really admired Rapp’s prose style. Her writing is open and honest, highly intelligent, philosophical, and raw. She describes her life as: ‘A constant tug of war: wanting to remember, wanting to forget; wanting this to be over, and of course never wanting Ronan’s life to end.’ Rapp also discusses at length the value and quality of life, and whether either can be truly quantified, as it all depends on circumstance and situation. ‘But what did that mean,’ she asks, ‘life is about living? What did it mean really? Was I saying that when my child could no longer think, that he was no longer a person? That, too, was a complicated question.’ She goes on: ‘Our family faced gruesome choices: how would we know when Ronan’s quality of life had diminished to the point where letting him go was the more humane option? Was it when he stopped swallowing and vocalizing, when he could no longer see us or experience our loving touch?’

Rapp discusses everything not just from a personal standpoint, as a mother trying to process the imminent death of her baby, but also from a wider, ethical one: ‘These decisions are made more emotionally complicated by the fact that the medical community in this country [the USA] has become expert at prolonging life to the point of being unwilling or unable to engage in any nuanced discussion about what it is they’re saving.’ She also touches upon religion, and the end-of-life stage.

Some of Rapp’s phrasing, whilst clearly relating to her own and her son’s situation, is applicable to our lives in the modern world, no matter what we may face: ‘We want will; we think relentless self-improvement will literally improve our lives, allowing us to literally control our happiness; we want to believe we have power over our own destinies. We, quite simply, do not have any control, not really, and this is perhaps the hardest lesson to learn.’ She is quick to emphasise, too, that this kind of shocking diagnosis can happen to anyone: ‘The geneticist told us that if we all had our DNA analysed, we’d freak out. We’d be horrified by the many possibilities…’. Later, she writes: ‘Grief, I realized, is watery and trembling and always exists beneath the surface of real life; just a gentle touch and it’s spilling everywhere.’

An element which I found very revealing in The Still Point of the Turning World was the way in which both friends and strangers would react to Ronan’s disease, and to her as his mother. She found those who had been excellent friends turning away from her, and forged strong relationships with support groups for families faced with Tay–Sachs diagnoses.

Lyrical, moving, and tender, The Still Point of the Turning World is a beautiful memorial to a son lost to a brutal disease.
Profile Image for Megan.
7 reviews8 followers
March 1, 2013
I was fortunate to read an ARC of this book. This book was beautiful. The author is a Wyoming native so I enjoyed reading about references to my home state. Her son, Rowan had Tay-Sachs disease. He recently passed away. She has a popular blog (Little Seal) about her journey with her son.

This book came into my hands shortly before my mother passed away. It was a serendipitous gift. It provided me such comfort as I often read it under the covers with a flashlight in my own cocoon of grief. Emily Rapp is a talented writer who is able to immerse the reader into her story without being overly sentimental or completely grief stricken. I recommend it highly. It is not just a book about loss, in fact, it is quite the opposite; it is a book about love and life.
22 reviews6 followers
April 14, 2013
I am so grateful to Emily Rapp for writing this book. Her son, Ronan, was Diagnosed with Tay-Sachs at 9-months-old in January 2011. He died in February 2013. As another who experienced the privilege and pain of her own child's "slow fade," I see this book as a gift -- to me, to my children, to everyone.

I first read Rapp's work in the 2011 NYT piece "Notes from a Dragon Mom" http://www.nytimes.com/2011/10/16/opi... and am happy that this book resonated with me as much as the article did.

This book is not the heartwrenching story of a little boy lost, it is not the bittersweet narrative of a child who will die much too young. It is not even a timeline of the trials and tribulations of parents making sense of their beloved son's short life. It is more Rapp's internal struggle to make sense of parenting, of her son's life, of her own life, of anyone's life.

I agree wholeheartedly with Rapp, who says in discussing C.S. Lewis's feelings after the death of his wife "nobody -- ever -- can feel another person's agony," so I won't say that this book describes the experiences or feelings of a parent whose child is dying. But I can say that it does describe my emotional journey.

Rapp is able to frame her thoughts in more literary and theological contexts than I do mine, but the questions for which she seeks answers, insight, and comfort are the same. I feel a kinship with her feelings on so many things: That our children were not here to teach us something -- that line of thinking does them and their own lives a disservice; that luck and fortune and even karma, if they exist at all, are not righteous; that so much of what our focus is as 21st century parents is misguided and missing the point entirely.

This book is not for the faint of heart. It is raw. Rapp writes mostly of Ronan in the past tense, but did the writing while her son was living. She includes many esoteric literary references, which I found ot be enlightening and somewhat comforting, but others may find off-putting. She discusses an experience that no one wants, and usually only want to hear about so that they can be glad it isn't theirs. But there is so much to learn about parenting all of our children from what Rapp discovers.
Profile Image for Erica Nicol.
66 reviews21 followers
February 5, 2013
Knowing the subject matter of this book - Emily Rapp's navigation of loving and parenting her baby son Ronan, diagnosed with a terminal illness - I opened the first pages with both hunger and trepidation. The death of babies and children, perhaps because so hard to contemplate, seems to be better (or at least easier) fodder for fiction than non-fiction. We don't want these deaths to happen, after all. But they do. And The Still Point of the Turning World is a quietly gorgeous, honest and absolutely necessary book that gets to the heart of what it means to be a parent, to be human, to love deeply in the face of death.

Rapp does several things brilliantly. She brings a great deal of honesty and self-awareness to bear, sharing herself and her perspective courageously as she writes about her anger, her search for meaning and balance, her questions that never seem to be - quite - answered. She writes of her son Ronan with love and respect, and this is seen not only in her beautiful descriptions, but in her search to understand how her Ronan experiences his world, love, and his family.

But I think what endears this book to me most is the way that Rapp, as a writer and reader, turns to literature for comfort and guidance. She is a discerning and insightful reader, and when she brings the writings of writers like Simone Weil, Margaret Atwood, Mary Shelly, a wealth of poets (including Katie Ford, Kobayashi Issa, and Louise Gluck), and finally C. S. Lewis to bear on her life and that of her son, she does so brilliantly and compellingly.

Rapp's exploration of what it means to parent in the moment, without all of the future goals that commonly drive parenting, feels urgent and earnest and propels her (and her reader with her) toward wisdom. And while the subject matter of this book is as weighty as anything Atlas had to bear, her writing is not - it is deft, often wryly funny, and evocatively beautiful.

Profile Image for Amanda.
666 reviews
March 1, 2013

I feel bad being at all critical of this book because the subject matter is so heartbreaking. I love the 'thesis' and message of it - that in a way it was freeing to love this child with no expectation for the future. I just wish the book would have been a little more organized. It felt very much like we were just reading a diary with no endpoint and at times it got repetitive. She is a beautiful writer though and I can't imagine how tough it must have been to write about that topic. I am glad she did.
Profile Image for Lisa.
230 reviews2 followers
March 6, 2013
The Still Point of the Turning World is a memoir that will stick with me forever. Emily Rapp's story of her life with Ronan, her son who was born with Tay Sachs, is honest, beautiful, heart-breaking, full of raw emotion and poetry. I found myself slowing down to read it carefully and then going back to read sections over again. I don't usually do that. I loved the way she incorporated other literature, poems with her story. Really anything I write won't do thsi beautiful story justice. It should be on everyone's to-read- list.
March 23, 2013
Moving, sad, and poignant; any parent (any human) should be able to empathize with Rapp's grief over slowly losing her beloved only child to a cruel and horrific disease. Yet Rapp's book feels more like a rumination on loss than a memoir per se. Long passages are devoted to rambling thoughts about life, death, and other Big Topics, and Rapp quotes voraciously from various literary works. I felt myself removed from Rapp's story for long stretches and ultimately connected with her grief only on the most abstract of levels.
Profile Image for Rachel B.
767 reviews39 followers
October 19, 2020
2.5 stars

Rapp made some good points and observations in the first half of the book, particularly on what it's like to live with a disability (read: not as devastating as people imagine). The second half dragged for me, and felt like filler. Perhaps this was just because the author and I have very different personalities and so we grieve very differently.

It was sad to see that though she had grown up in a Christian family, the author never became a Christian herself, and her spiritual beliefs are a conglomeration of various religions and systems. Because of this, she doesn't necessarily believe in God or heaven, and so has no assurance of life after death for her son. This left the book without any real conclusion, and that contributed to my not liking the second half much.

I hate to complain about a book like this, that's so personal, but I also wished she had spent a few more minutes describing Tay-Sachs, the rare disease her son has. I'd never heard of it, and the book didn't give me a clear picture of what it actually is.

Rapp quotes a lot of poetry, which just isn't my thing, and some of the language was a bit flowery for me. There was also quite a bit of profanity.

I wouldn't bother to recommend this one. It's one of those books I'll barely remember a year from now. It's already fading fast...
Profile Image for Debbie Petersen Wolven.
252 reviews100 followers
April 11, 2013

I love the handful of earth that you are. Pablo Neruda

This review is long overdue, since I finished quite a while ago. I love the writing in this book; it is raw and stark and real and pulls no punches. It has been described as a memoir of dealing with her son's terminal illness, but it is so much more than that. What does it mean to live a full life? Ronan was loved and cared for from birth through his death. He happily lived in the moment every day. Then he was gone. Who is to say that this is not meaningful? He missed out on all of the things we think make up our lives, but he was never aware of those things or that he missed them. What does it mean to be a parent, when your child is going to die before age three? Parenting advice tends to be future directed--lessons and language and learning to walk and run. In the morning we lifted Ronan from his crib and kissed him. There was joy. We laughed. We lived. I took him hiking and rubbed his fat feet in the dirt and lifted his face to the juniper scented breeze. He went on road trips, to parties, coffee shops and restaurants. He was our companion, our child, our beloved...If Jesus were alive and I jostled up to him in a crowd with Ronan in my arms and touched his cloak, I would not suddenly grow a new leg, and Ronan would not start walking and talking and holding his head up without assistance. But as a result of the teachings of Jesus, people might regard Ronan and me differently, and with respect: the outcasts, the outsiders, brought into the communal fold. That really spoke to me, because it is a problem I have with the holy huddle of churchgoers that make up present day Christianity, especially in the South were I live; where you congregate on Sunday with others mostly just like yourself and subscribe to a common creed that has no room for question and certainly not dissent. Outsiders are treated with suspicion unless they come around to the exact beliefs and expectations of the group, at which point they are welcomed as long as they maintain the standard of behavior expected of them. Jesus walked with the people who were wounded and broken and invited them in as they were. All humanity should be invited into the communal fold no matter where they are in their journey. Rapp delves into this further when she talks about her youth group experience and how she was told that when she got to heaven, God would restore her lost leg. The underlying message is that she is not a complete person right now in her present condition and was somehow "less than" others--but God would fix her later, don't worry! She did not feel that way and it is presumptuous of Christians to assume. It is hard to accept that sometimes there will not be healing as we understand it. I love that Rapp looks for solace in a variety of places, and finds it; a Buddhist retreat, the New Mexico desert, a shelter for abandoned animals, not to mention art and the thoughts of philosophers, theologians and artists.God is in all of these places, if one takes the time to look. I loved this book, right from the opening line. This is a love story, which, like all great love stories, is ultimately a story of loss.

Profile Image for Rebecca.
3,554 reviews2,535 followers
March 18, 2021
In 2011 Rapp’s baby son Ronan was diagnosed with Tay-Sachs disease, a degenerative nerve condition that causes blindness, deafness, seizures, paralysis and, ultimately, death. Tay-Sachs is usually seen in Ashkenazi Jews, so it came as a surprise: Rapp and her husband Rick both had to be carriers, whereas only he was Jewish; they never thought to get tested.

This memoir was written while Ronan was still alive, and the rapid, in-the-thick-of-it composition is evident: it rides the same rollercoaster of feelings over and over again, even repeating some of the same facts. I put this down to the brain fog of anticipatory grief. “The constant push-pull: here but not for long. What will come next?” Rapp quotes extensively from other writers who have grappled with bereavement, especially poets, as if building an inner library to bolster herself against what is to come (“it wasn’t consolation I needed or desired, but the tools to walk through this fire without being consumed by it”).

Rapp puts her son’s life into context through memories of growing up disabled (she had a rare condition that necessitated the amputation of a leg as a child, and wore a prosthesis) in the conservative Midwest, contrasting the Christian theology she grew up in and studied at college with the Eastern and New Age spiritualities that prevail in Santa Fe, where she and Rick then lived with Ronan. She ponders the worth of a life that will be marked by no traditional achievements.

In The Art of Memoir, Mary Karr advises seven years between the events and the writing about them, but Rapp explains her strategy of instant reaction thus:
grief, this extreme experience, forces a writer to draw on her deepest resources, and such a dive demands so much work that what comes up must be heaved onto the page almost immediately; otherwise it might eat the thinker alive, drown them … Or at least that’s how I felt. You can eat fire for only so long, and then you’ve got to spit it out in another form or risk the burn.

She felt that “rendering loss was a way of honoring life,” which even with this death sentence hanging over the family had its times of pure joy: “there existed inside this helpless, frantic sadness exquisite moments of pristine happiness and an almost-perfect peace.” The title perfectly captures the necessity of finding this calmness of soul amidst a tumultuous life.

Originally published on my blog, Bookish Beck.
Profile Image for Sue.
613 reviews25 followers
June 8, 2013
When rating books, I usually reserve my 5 star ratings for books that make me want to immediately call a friend and tell her to read this book! For that reason, my initial reaction to this book was to rate it 4 stars. But the more I considered this, the more I realized that I would never want to call anyone and say, "You must read this book. It's about a baby that's dying." Nevertheless, it's a beautifully crafted and heart-breakingly honest memoir of 5 star quality that deserves to be read by thoughtful people.

The memoir encompasses just 9 months of the author's life and that of her young son, who before his first birthday, is diagnosed with Tay-Sachs disease, a neurodegenerative disorder that unequivocally and unrelentingly ends with death. More a meditation on loss than a chronological recording of a short life, the author struggles with painful questions for which there are no real answers. What is the value of a life that ends before it has really begun? Can a child who is daily losing the most primary of his senses realize that he is loved? How does a mother who was determined to give her child the best of everything accept the knowledge that she cannot even keep him alive? How do parents go on when the anticipated joy of watching their precious child develop is replaced with the gut-wrenching agony of watching him slowly die?

I do recommend this book, though be forewarned it takes stamina to journey with this mother into her grief. The Still Point of the Turning World is a book both dark and lovely, and I believe I am a more empathetic person for having read it. In that small way, perhaps, a ripple of good has been created by a life that was far too short.
Profile Image for Dana.
53 reviews2 followers
May 4, 2013
I won this book, and in doing so, was encouraged to write a review in return. Because of the heart wrenching subject matter (a mother's thoughts during the very short life of her infant child, who she knows is slowly dying), I thought a negative review would be akin to throwing a puppy over a bridge. It is just really hard to be critical of a nonfiction book that has such a sad theme. Now that I'm done with the book, I am relieved to say that, while it was hard to immerse myself at first, I thought it was overall pretty well written. As a mother, I empathized with the author and her terrible news. How terrible to know that your new arrival would soon be making a departure. Coincidentally, I saw the author interviewed on television, talking about the book, just weeks after her son had died, before I knew I won it, and I cried just watching the interview. And while I could not fathom the idea of losing one of my children in the way that the author had, I found her views on watching her son die were very similar to a situation in which I find myself with an adult friend who has terminal cancer--there is an acute knowledge in both situations where it feels that every moment is fleeting, but also heavy with the need to slow down time in order to store up everything that is happening into memory so that once gone, the dying are not forgotten. There are some amazing observations sprinkled throughout the book that would be very applicable to anyone who is mourning a loved one. So while initially dreading reading this book, I found myself somehow consoled and enriched once I finished.

1,023 reviews17 followers
February 23, 2013
this memoir of a mother's life with her terminally ill baby is heartbreaking, and emily rapp mixes her own day to day experiences of life with her tay sachs afflicted son, ronan, with passages about the nature of grief and death from cs lewis, mary shelley and others. the major jist of the book is that while we place the value of a person on their potential, how do you come to terms with someone whose potential exists literally in only the moment to moment sensory pleasures that make up ronans life. how do you function with friends who dont seem to get it, or with people who want to console but dont realize that in this case there is no consoling. rapp asks a lot of questions, but there arent many answers : how could there be? this is about the absurdity and cruelty of life. its very difficult to be critical of a memoir without seeming critical of a persons life, especially in a circumstance as tragic as this one, and while i found her struggle and her unconditional love for her baby inredibly moving, the actual telling of the story, the structure the aesthetics the all the things that make it a work of art, left m e relatively cold. : (
Profile Image for Kristi.
211 reviews
September 6, 2013
Grief is a deeply personal process that requires one to be fully self-absorbed. Clearly the author is in the midst of grieving while writing this because she wanders through each chapter completely self-absorbed, searching her own intellect through literature, religion, and philosophy for meaning and answers to her incredibly sad situation. Answers can not be found here. And perhaps that's her point.

Emily takes readers into (not through) her own grief process in a way that for me was neither helpful or insightful, just confusing. The ending was so abrupt it left me searching for missing pages.

All we can do for a grieving person is BE with them, listen to their story, and love them as they journey through the pain. For an author to require that of her readers is demanding too much.
Profile Image for Karen.
88 reviews
March 20, 2013
I was a little disappointed in this book. I assumed it would be about Ronan, the infant son of the author, diagnosed with Tay-Sachs. It was actually about the author and her reactions and dealings with his diagnosis and brief life. I suppose it would be an excellent book for someone dealing with grief, but it wasn't what I was hoping for. I would recommend this to certain people but not just anyone.
Profile Image for Roxane.
Author 116 books156k followers
November 13, 2012
Beautiful, intense, thought-provoking, open. More thoughts to come in essay form.
Profile Image for Lin F.
236 reviews
May 26, 2021
This was a beautiful ode to Ronan, but mostly it was a view into the world of anticipatory grief, and how one navigates that journey (and is swept away by it). I had eight beautiful and painful months with my daughter between the knowing and her passing, and there were so many times in this book that I realized Emily and I had the same thoughts and responses to our shared situation of knowing our child wouldn't survive (in Haley's case, cancer).

I was surprised at some of the negative reviews of this book, and I can only imagine that they are written by those who haven't lost a child. I say that because I might have also felt that the book was too raw, too repetitive, too philosophical, or whatever 'too' didn't work for some readers, but as a bereaved mother and not just a reader, this book was real, the emotions are universal, the thoughts- I've had them. I am very thankful that Emily Rapp was a writer, and a beautiful writer at that, and I have this book that I can reread and not feel so alone in my grief.
Profile Image for Suzanne.
33 reviews43 followers
March 20, 2021
"A broken heart is an open heart, and there exsists great strenght in a shaky vulnerability. "

This was a beautiful and gut wrenching read. Dealing with my own deep grief I have been drawn over and over to others experiences, wanting to emerse myself in their stories so that I can better understand my own. Emily Rapp shares so openly about the experience of watching her son die, and how she to sought guidance in books and others stories, and how this helped her process her own grief. There were a lot of messages in this book I needed to hear right now, especailly the line at the top. I am grateful she spoke so honestly about the difficult emotions such as rage and the almost complete psychotic break that happens with this type of loss that feels so difficutl to describe to other people but she managed to capture it so perfectly with certain lines and passages. I will be seeking out her newest book in the near future.
Profile Image for MountainAshleah.
744 reviews43 followers
February 24, 2021
I certainly can understand why readers may find this memoir more of an academic reflection on grief and less a mother's loss of her child. But what a profound loss, from a terrible genetic disease, with terrible symptoms and a slow inevitable death. While all around her this over-achieving woman, who has her own life shaping disability, is forced to watch other toddlers flourishing while hers will never even speak and was starting to die almost as soon as he was born. The image of the author writing with her arms surrounding her dying child on her lap.is an image I will never unsee. This memoir is far ranging and far reaching. It doesn't dive deeply into the daily sorrows but rather relies on literature, art, reflection and yes careful analysis to process Ronan's slow slide towards inevitable death. Yet all his short life he lived in a state of comfort, joy, and innocence lovingly cultivated by his parents. Ah, utterly wrenching. I found this to be a remarkable memoir by a remarkable woman.
51 reviews19 followers
April 25, 2021
Der Verlust eines geliebten Menschen ist immer schwer und fühlt sich für jeden anders an.
Zu lesen wie Emily Rapp mit dem bevorstehenden Tod ihres Sohnes umgeht, wie sie leidet, hadert, ihn schließlich aber annehmen kann und auch aus ihm lernen kann, war schön zu lesen und mit zu erleben.
Ihre Liebe für ihren Sohn und ihn so zu lieben wie er ist und ihm das zu geben, was er in dem Moment braucht, ist das was ich glaube was Liebe auch ausmacht.
Ich konnte wieder einige Dinge mitnehmen und lernen.
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