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This Lovely Life: A Memoir of Premature Birth, One Twin Lost and One Surviving, and a Mother's Fierce Love
Vicki Forman gave birth to Evan and Ellie, weighing just a pound at birth, at twenty-three weeks’ gestation. During the delivery she begged the doctors to "let her babies go" — she knew all too well that at twenty-three weeks they could very well die and, if they survived, they would face a high risk of permanent disabilities. However, California law demanded resuscitation. Her daughter died just four days later; her son survived and was indeed multiply disabled: blind, nonverbal, and dependent on a feeding tube.
This Lovely Life tells, with brilliant intensity, of what became of the Forman family after the birth of the twins — the harrowing medical interventions and ethical considerations involving the sanctity of life and death. In the end, the long delayed first steps of a five-year-old child will seem like the fist-pumping stuff of a triumph narrative. Forman’s intelligent voice gives a sensitive, nuanced rendering of her guilt, her anger, and her eventual acceptance in this portrait of a mother’s fierce love for her children.
This Lovely Life tells, with brilliant intensity, of what became of the Forman family after the birth of the twins — the harrowing medical interventions and ethical considerations involving the sanctity of life and death. In the end, the long delayed first steps of a five-year-old child will seem like the fist-pumping stuff of a triumph narrative. Forman’s intelligent voice gives a sensitive, nuanced rendering of her guilt, her anger, and her eventual acceptance in this portrait of a mother’s fierce love for her children.
272 pages, Paperback
First published January 1, 2009
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About the author
Vicki Forman
3 books6 followersMy work has appeared in the Seneca Review and the Santa Monica Review as well as in the anthologies Love You to Pieces: Creative Writers on Raising a Child with Special Needs and Literary Mama: Reading for the Maternally Inclined. I live in Southern California with my husband and daughter."
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Displaying 1 - 30 of 102 reviews
January 22, 2013
wow. this staggered me. it's the memoir of a woman who gave birth to catastrophically premature twins, a boy & a girl. when she learned that she was in preterm labor, she recognized that her babies were likely to be very, very sick, if they survived at all, & she begged the doctors to let them go rather than performing heroic feats of resuscitation. but her doctors refused, & refused again when she asked for a DNR order in the NICU. it was kind of shocking to read about how these doctors disregarded her wishes, knowing that they were saving these babies for what would most likely be foreshortened lives full of medical traumas.
it's not really a spoiler to report that the girl twin died after four days. the boy twin survived, but was in the NICU & the pediatric intensive care unit for a year & a half. really puts my 24 days in the NICU with my daughter into perspective. she only cooked for six weeks longer than these babies...what a difference that makes when we are talking about fetal development.
i don't really want to go into too much detail about the book, so i will just say that it was amazing & sad & so many things. maybe my emotional reaction to it was due to being so recently post-partum & having had my own NICU experience...this probably isn't a great book to read if you are pregnant or if your micro-preemie is currently in the NICU, because it's terrifying in a lot of ways. but i'm glad i read it, & i regret that this review is failing so woefully at expressing my feelings.
it's not really a spoiler to report that the girl twin died after four days. the boy twin survived, but was in the NICU & the pediatric intensive care unit for a year & a half. really puts my 24 days in the NICU with my daughter into perspective. she only cooked for six weeks longer than these babies...what a difference that makes when we are talking about fetal development.
i don't really want to go into too much detail about the book, so i will just say that it was amazing & sad & so many things. maybe my emotional reaction to it was due to being so recently post-partum & having had my own NICU experience...this probably isn't a great book to read if you are pregnant or if your micro-preemie is currently in the NICU, because it's terrifying in a lot of ways. but i'm glad i read it, & i regret that this review is failing so woefully at expressing my feelings.
August 9, 2009
In reading other glowing reviews of this book, I think that I must have missed something in my reading. The book is an interesting page-turner, and the experiences the author and her family had to go through with their premature children are unquestionably difficult beyond understanding and deserving of much sympathy. However, I felt that the tone of the book was quite bitter (there is a lot of finger pointing at various doctors and health professionals) and, until the last few pages, did not coincide with the title "this lovely life." But I do admire the author's sometimes brutal honesty. She is not afraid to portray her own fallibility alongside others'.
I guess that my main problem with the book was that the author's love for her disabled son did not emanate from the pages (although I'm sure that it was there). Instead, I felt that her sense of duty did. For some reason, this bothered me a bit.
I guess that my main problem with the book was that the author's love for her disabled son did not emanate from the pages (although I'm sure that it was there). Instead, I felt that her sense of duty did. For some reason, this bothered me a bit.
July 6, 2009
Vicki Forman delivers a beautifully written story that needed to be told. Although I knew the subject matter and a few of the details before picking up the book, I was unprepared for the rollercoaster of raw emotion I would experience reading it. Vicki's prose is anything but raw, however -- it is polished and poetic, truly wonderful to read through tears.
July 4, 2009
Such a beautiful, thought-provoking book. A story that was heartbreaking and uplifting all at once. Forman is an extraordinary writer.
December 6, 2010
Every year there are more parent memoirs about children who have problems. I'm familiar with a great many, having been following the genre since about 1986, and in all honestly most of them disappoint me. Their repeated shortcomings were the main factor that drove me to write my own (publication expected in 2011). This Lovely Life, however, is in a class by itself. There is so much truth and heart in this book that it feels close to the final word on the subject.
I wholeheartedly second the other reviewer who said this needs to be read by NICU personnel. It's obscene that such people could impose their values on a family, and refuse to accept a Do Not Resuscitate order for a desperately ill preemie who has no realistic hope of ever approximating a normal life. As Vicki Forman's father puts it, "Their decision? How is this their decision? Are these their kids? Are they going to be around to raise them?" (The Goodreads summary says that the problem is state law, but I did not get that from the book. It's pretty clear in saying this was a "policy" of the particular hospital and a "preference" of the individual caregivers involved.)
I say that decision is obscene while keeping in mind the comments of Atul Gawande, MD, in his excellent book Better , to the effect that a physician should fight to achieve the best possible outcome for each patient. And as the parent of a disabled kid, I have a long history of butting heads with doctors who did not even begin to exert themselves in my son's behalf. What the problem boils down to in this story, as Forman explains, is that it is enormously deceptive and cruel, when the odds are overwhelmingly against a favorable outcome, for the professionals to brush aside family wishes with a vague suggestion that things might somehow turn out ok. That is the line they used with Forman's family and mine as well, although to justify diametrically opposing protocols.
One of Forman's twin preemies lived long enough, however, for her also to learn about the side of things I experienced:
If the doctors had lined up at Evan and Ellie's birth to do the impossible, to prove all that medical science could do to save one-pound babies, I was to learn how little those medical professionals on the other side of that accomplishment could or would do to help.
Forman captures the emotional experience of recognizing "how permanently things had changed" and acknowledging that, regardless of what is done, "there's no living with any of the consequences," and yet she avoids making the experience excruciating for the reader. I don't think my similar personal experience is necessary to recognize the authenticity, or the effectiveness, of passages like the following:
I backed my car into a vintage Porsche and crushed in its drivers'-side door. I rented a car while mine was in the shop being repaired. As I was parking the rental car in the hospital lot, I heard the crunch of metal going bad. I had somehow smashed the hood under the fender of the high-profile SUV parked next to me. When I got my own car from the shop, I once again backed into a classic car, this time a Mustang. Grief had made me not safe.
Perhaps I was able to read it without visceral reactions (as opposed to my response to Frank Deford's very intense Alex: The Life of a Child ) because dramatic scenes are not dominant in this narrative. The thread is held together mostly with intelligent summary and, increasingly as the story goes on, with introspection. I don't always follow the author's thinking in the latter kind of passages, particularly when she supposes that her four-day-old daughter might have chosen to die so that the other twin could live, and when she comes to terms with her personal demons of responsibility, blame, and guilt. But I suspect bits like the following might be rendered with sublime beauty if this story were ever adapted to film:
I had my share of moments in which I imagined what it would be like to be her mother had she lived: another dark-haired daughter, more laughter in the dark at bedtime. Images have come to me many times of pushing her on a swing or listening to her talk to Josie in the back seat.
I could spend all day quoting passages. Here's one more that describes one of the effects this experience had on the author:
[Previously] I believed that, like the tough words surrounding Evan's life (blindness, mental retardation, seizure disorder), the truth of life and existence could reveal itself in language. What happened when Evan and Ellie were born was the absolute erasure of this reality for me. So what if I begged for the twins not to be resuscitated? My words were not heard. So what if I understood the medical reasons and terminology for why Evan went blind? That understanding didn't affect the hard reality.
My own memoir has a different story (for starters, my son was not a preemie) and takes a different approach -- which is good, since otherwise Forman's would be a very tough act to follow. In my version, emotions have a more outward manifestation. There's more external action and not so much -- arguably not enough -- mulling and making sense of it all. Perhaps Forman's version and mine, coming at the problem of what to do about disabled children from their respective directions, will complement each other and together, for those physicians open to feedback (I presume there may be a few), nudge healthcare toward something a bit more humane.
I wholeheartedly second the other reviewer who said this needs to be read by NICU personnel. It's obscene that such people could impose their values on a family, and refuse to accept a Do Not Resuscitate order for a desperately ill preemie who has no realistic hope of ever approximating a normal life. As Vicki Forman's father puts it, "Their decision? How is this their decision? Are these their kids? Are they going to be around to raise them?" (The Goodreads summary says that the problem is state law, but I did not get that from the book. It's pretty clear in saying this was a "policy" of the particular hospital and a "preference" of the individual caregivers involved.)
I say that decision is obscene while keeping in mind the comments of Atul Gawande, MD, in his excellent book Better , to the effect that a physician should fight to achieve the best possible outcome for each patient. And as the parent of a disabled kid, I have a long history of butting heads with doctors who did not even begin to exert themselves in my son's behalf. What the problem boils down to in this story, as Forman explains, is that it is enormously deceptive and cruel, when the odds are overwhelmingly against a favorable outcome, for the professionals to brush aside family wishes with a vague suggestion that things might somehow turn out ok. That is the line they used with Forman's family and mine as well, although to justify diametrically opposing protocols.
One of Forman's twin preemies lived long enough, however, for her also to learn about the side of things I experienced:
If the doctors had lined up at Evan and Ellie's birth to do the impossible, to prove all that medical science could do to save one-pound babies, I was to learn how little those medical professionals on the other side of that accomplishment could or would do to help.
Forman captures the emotional experience of recognizing "how permanently things had changed" and acknowledging that, regardless of what is done, "there's no living with any of the consequences," and yet she avoids making the experience excruciating for the reader. I don't think my similar personal experience is necessary to recognize the authenticity, or the effectiveness, of passages like the following:
I backed my car into a vintage Porsche and crushed in its drivers'-side door. I rented a car while mine was in the shop being repaired. As I was parking the rental car in the hospital lot, I heard the crunch of metal going bad. I had somehow smashed the hood under the fender of the high-profile SUV parked next to me. When I got my own car from the shop, I once again backed into a classic car, this time a Mustang. Grief had made me not safe.
Perhaps I was able to read it without visceral reactions (as opposed to my response to Frank Deford's very intense Alex: The Life of a Child ) because dramatic scenes are not dominant in this narrative. The thread is held together mostly with intelligent summary and, increasingly as the story goes on, with introspection. I don't always follow the author's thinking in the latter kind of passages, particularly when she supposes that her four-day-old daughter might have chosen to die so that the other twin could live, and when she comes to terms with her personal demons of responsibility, blame, and guilt. But I suspect bits like the following might be rendered with sublime beauty if this story were ever adapted to film:
I had my share of moments in which I imagined what it would be like to be her mother had she lived: another dark-haired daughter, more laughter in the dark at bedtime. Images have come to me many times of pushing her on a swing or listening to her talk to Josie in the back seat.
I could spend all day quoting passages. Here's one more that describes one of the effects this experience had on the author:
[Previously] I believed that, like the tough words surrounding Evan's life (blindness, mental retardation, seizure disorder), the truth of life and existence could reveal itself in language. What happened when Evan and Ellie were born was the absolute erasure of this reality for me. So what if I begged for the twins not to be resuscitated? My words were not heard. So what if I understood the medical reasons and terminology for why Evan went blind? That understanding didn't affect the hard reality.
My own memoir has a different story (for starters, my son was not a preemie) and takes a different approach -- which is good, since otherwise Forman's would be a very tough act to follow. In my version, emotions have a more outward manifestation. There's more external action and not so much -- arguably not enough -- mulling and making sense of it all. Perhaps Forman's version and mine, coming at the problem of what to do about disabled children from their respective directions, will complement each other and together, for those physicians open to feedback (I presume there may be a few), nudge healthcare toward something a bit more humane.
December 2, 2009
A cautionary tale. Early in her pregnancy, Forman went into labor and delivered twins at 23 weeks gestation. (Abortion is legal until the 24th week.) She immediately requested that they be allowed to die naturally - that is, for an absence of medical intervention. She was overruled.
And from then on, her life - and by proxy, the lives of her husband and toddler - are consumed by the needs of the twins - and by Forman's own (justified) need to control their doctors and medications, to take a part in their lives.
This is a story of grief: make no mistake: and Forman does not fall into the overly-precious territory of "motherhood solves all problems & when you see your babies nothing else will ever matter ever again". She is overwhelmed, terrified, unable to accept the possibility of severe disability for her twins - she holds out hope for the impossible - but as the statistics come closer and closer & finally become reality, life becomes a matter of putting one foot after the other after the other, and hope gives out.
She finally does find a path through her own grief and fear and anger, but it's not a pleasant journey, and for those who recognize the road all this may be a little too much. Contrary to the blurb, there's no 'triumph' to be found in sacrifice.
In between, there's a lot of information on raising disabled children, advocacy for patient advocacy, the limits of doctor knowledge v. limits of parental knowledge, the limits and expression of disability and love and 'bravery'. Et cetera. Not didactical in the least, Forman is generally clear-voiced and forthright; she doesn't protect herself by passionless recounting or dissolve into pretty, pretty prose.
(The Forward - not written by Forman - is tremendously presumptuous & snobby; I recommend that you skip it, collect your 200 dollars, and proceed straight to Go.)
...I forgot to mention how very much I admired Vicki Forman. Courage is a rare thing, and honesty is sometimes rarer. She has both.
And from then on, her life - and by proxy, the lives of her husband and toddler - are consumed by the needs of the twins - and by Forman's own (justified) need to control their doctors and medications, to take a part in their lives.
This is a story of grief: make no mistake: and Forman does not fall into the overly-precious territory of "motherhood solves all problems & when you see your babies nothing else will ever matter ever again". She is overwhelmed, terrified, unable to accept the possibility of severe disability for her twins - she holds out hope for the impossible - but as the statistics come closer and closer & finally become reality, life becomes a matter of putting one foot after the other after the other, and hope gives out.
She finally does find a path through her own grief and fear and anger, but it's not a pleasant journey, and for those who recognize the road all this may be a little too much. Contrary to the blurb, there's no 'triumph' to be found in sacrifice.
In between, there's a lot of information on raising disabled children, advocacy for patient advocacy, the limits of doctor knowledge v. limits of parental knowledge, the limits and expression of disability and love and 'bravery'. Et cetera. Not didactical in the least, Forman is generally clear-voiced and forthright; she doesn't protect herself by passionless recounting or dissolve into pretty, pretty prose.
(The Forward - not written by Forman - is tremendously presumptuous & snobby; I recommend that you skip it, collect your 200 dollars, and proceed straight to Go.)
...I forgot to mention how very much I admired Vicki Forman. Courage is a rare thing, and honesty is sometimes rarer. She has both.
Read
February 15, 2012"Motherhood, for most of us, comes with its own language. We learn to divide our experience into trimesters; we become familiar with all things maternal, including "instinct," "bond" and "leave." Many of our new words slide into a kind of noun-heavy babyspeak: onesies, binkies, sippies, nummies. But there is a kind of motherhood that catches you by surprise, one that empties your heart and mind and leaves you struggling to find any words at all. Vicki Forman writes about such an experience in her memoir, This Lovely Life: A Memoir of Premature Motherhood, which was awarded the Bread Loaf Writers' Conference Bakeless Prize in Creative Nonfiction.
Forman gave birth to Evan and Ellie, each weighing less than a pound, at twenty-three weeks gestation. It was an easy delivery (such small babies were not difficult to birth), but Forman knew that what followed would be fraught with complications: her babies were at great risk for many medical conditions, even death. 'One of life's great illusions,' she writes, 'is the notion we can want -- and get -- things on our own terms, no matter what. It's human nature to seek pleasure and avoid suffering, but what happens when suffering finds you?'"
Read the rest of Jennifer Graf Gonneberg's review at Literary Mama
Forman gave birth to Evan and Ellie, each weighing less than a pound, at twenty-three weeks gestation. It was an easy delivery (such small babies were not difficult to birth), but Forman knew that what followed would be fraught with complications: her babies were at great risk for many medical conditions, even death. 'One of life's great illusions,' she writes, 'is the notion we can want -- and get -- things on our own terms, no matter what. It's human nature to seek pleasure and avoid suffering, but what happens when suffering finds you?'"
Read the rest of Jennifer Graf Gonneberg's review at Literary Mama
April 22, 2013
This was an amazing book. With courage and honesty, the author describes the experience of giving birth to her twins prematurely, of losing one and of discovering over time how severe the surviving twin's medical needs and disabilities were to be. The author offers up her doubts, her fears, her weakness and her strength. This is not an "I proved the professionals wrong and my child beat the odds" kind of story; there is no happy ending. Rather, it is a story lived out by an increasing number of families as medical interventions push the age of viability lower and lower. It is sad and poignant and beautiful and raises the question of whether it is truly best to intervene at all costs; of whether any life is worth living in spite of its hardships. This book is a tribute to Ellie and Evan, born into this world too soon and with too much to bear.
January 26, 2010
First off, this book is not for everyone. And it's certainly not going to be five stars for everyone. But for a survivor of the NICU or PICU, a parent who has seen his or her child fighting for life, and a parent who's had to face down the medical establishment and sometimes win and sometimes lose, it's beautiful, a tear-jerker, and poignant. One reviewer commented that no one of child-bearing age should read this book. It could completely terrify prospective or new parents. But it all depends on one's perspective...and how one sees the world. As a mother of a 24-weeker myself and a NICU survivor, I found this book to be very touching, unflinchingly honest, and deeply bittersweet.
Vicki Forman is the mother of fraternal twins, Evan and Ellie. When she goes into labor around 23 or 24 weeks gestation, she knows all too well what their risks are. She asks that the babies be allowed to die. She didn't want any heroic measures to save their lives. Somewhere deep in her soul, she felt it wasn't worth the potential costs. But the doctors ignored her request and rescusitated the babies.
Ellie lived for 4 days, and Evan survived. But just barely. The twins' birth catapulted Vicki, her husband Cliff, and their daughter Josie, into the world of neonatal intensive care, and the complications that often ensue.
Evan was not one of the lucky micropreemies who escape with just a few minor disabilities. He went blind because of retinopathy of prematurity, had extreme feeding issues, and had a severe seizure disorder that most likely compromised his ability to develop "normally." He also had a serious heart condition.
I had discovered Forman's wonderful way with words through the online ezine, Literary Mama. I read everything she wrote. She wrote about loving Evan passionately, but being acutely conscious of how different he was from other children and what they have lost. I put off reading this book until I was ready, because I knew it would leave me raw...especially because Evan suddenly and unexpectedly died last year from an intestinal blockage, probably connected to his prematurity (scarring from a g-tube). This book does not have a traditional happy ending.
To my husband's chagrin, I dog-eared countless pages in this book to remember passages that resonated with me:
--The doctors often do not mention the lasting complications or lifelong disabilities that micropreemies can face...and that "two babies born on the same day at the same birth weight can have two absolutely different outcomes." We grew well aware of this in the NICU, as other babies appeared to do better than Chris, while others did much worse. In Chris' case, we were told of the high chance of disabilities, but only a few days after his birth. We were pretty ignorant.
--Vicki Forman went into labor in much the same way I did--she ignored small signs that things were wrong, just as I did, and we both felt the resulting guilt of not following those signs soon enough.
--One chapter opens with a description of people and the categories they fall into after a preemie birth: the rocks, the wanna-be-theres, and the gingerbread men. The rocks attempt to do everything they can to provide support and love. The wanna-be-theres want to help but don't know how. They often say the wrong thing. And the gingerbread men--they run, run, run as fast as they can away from you. We knew people in all three categories when Chris was born. Some people we hardly knew were rocks. And some people turned out to be gingerbread men. As our close friends (who lost a 23-weeker after 1 week of life) say, "grief reorders your address book." This is true whether it's grief from death, or grief from loss of a "normal" experience.
--Forman worries about what Evan must feel, lying alone in his hospital isolette, and wondering where his twin has gone. Evan was always nonverbal, so I suppose she never found out if Evan missed his twin in his very core of being. I suspect he did.
--I could so relate to Forman's frustration with the nazi nurse who told her she had to take her daughter to the other end of the hallway on a day when siblings were not allowed to visit (even though they were not visiting, but merely restocking breast milk in the refrigerator). I got so mad at certain nurses for similar reasons. I will never forget those feelings of rage.
--"They say it's your baby, but until you go home it's not your baby."
--I sobbed when I read about the first time Forman saw Evan's bare face (when they extubated him). I too remember the first time I saw Christopher's face without a tube forced down his throat. And how normal baby breaths, baby coughs, and baby sneezes could become.
--I remember how when we first got to start holding Christopher when he was about 6 weeks old, we had to alternate days--an hour per day...and how much I ached to hold him longer than that, every single day.
--I remember seeing some of the monster babies in the NICU and wondering what could possibly be wrong with them--they were so huge! Forman has the same feeling about such a baby and her mom, only to grow close to that family and learn their story, a difficult one, too.
--The many doctors calling Evan "the baby" instead of his name reminded me of one neonatologist who cared for Chris who had that very annoying habit. It bothered me so much that I finally spoke to a nurse about it, and she passed the feedback along to him. Bless him--he started using Christopher's name after that.
--Forman writes about how bizarre that the world can go on around her while she grieves for her baby girl. I could relate to this feeling. I stopped reading the comic pages when Chris was in the NICU. They just weren't funny any more. When women complain about minor pregnancy symptoms or make jokes about wanting their babies to come early, I am not amused.
Vicki Forman and I approached the prospect of having premature babies in very different ways. When I went into premature labor, we were given the option to have a c-section (and give him a 50% chance of survival--although these statistics were, at best, a guess, and no chance of disabilities was mentioned) or to have a vaginal birth and risk certain death. We chose the c-section, and we wanted them to do everything possible to save him.
I believe our approach was due to three factors: (1) our complete ignorance about what we were facing--I believe Forman had a much better understanding of the risks involved, (2) a generally optimistic belief system, and (3) our belief that everything happens for a reason, and that whatever happened was meant to be. If the doctors had told us that he would have a 90% chance of disability, would that have changed our mind? But what is a disability? Wearing glasses? A learning disability? Cerebral palsy? Blindness? It could be any or several of those. No one could predict what would happen.
Even though we approached our children's births in very different frames of mind, I deeply admire and respect the choices Forman made (or tried to make), and even more, her brutal honesty about why she made that choice. This book brings to light one of the many challenges of saving these very early preemies. Parents need to be informed of what's at risk and what the potential cost could be. As much as I didn't want to hear all the scary statistics during the NICU experience, I believe it's important for parents to understand the full picture and how things could turn out--just as they need to understand that these are only statistics and no one has a clear crystal ball. Our son Chris is an excellent example of a baby that no one would have expected to do so well. We have friends whose 24-weekers have serious medical and developmental issues.
The doctors are only there for a short time in these children's lives. But the parents are the ones who are there forever--whose lives are never the same. Forman loved her son passionately, even though at first she did not want heroic measures. Whether she would have made the same choices if she were faced with the same at-risk birth again, I do not know. This book is a wonderful tribute to what turned out to be a lovely, but tragically short, life of her son.
Vicki Forman is the mother of fraternal twins, Evan and Ellie. When she goes into labor around 23 or 24 weeks gestation, she knows all too well what their risks are. She asks that the babies be allowed to die. She didn't want any heroic measures to save their lives. Somewhere deep in her soul, she felt it wasn't worth the potential costs. But the doctors ignored her request and rescusitated the babies.
Ellie lived for 4 days, and Evan survived. But just barely. The twins' birth catapulted Vicki, her husband Cliff, and their daughter Josie, into the world of neonatal intensive care, and the complications that often ensue.
Evan was not one of the lucky micropreemies who escape with just a few minor disabilities. He went blind because of retinopathy of prematurity, had extreme feeding issues, and had a severe seizure disorder that most likely compromised his ability to develop "normally." He also had a serious heart condition.
I had discovered Forman's wonderful way with words through the online ezine, Literary Mama. I read everything she wrote. She wrote about loving Evan passionately, but being acutely conscious of how different he was from other children and what they have lost. I put off reading this book until I was ready, because I knew it would leave me raw...especially because Evan suddenly and unexpectedly died last year from an intestinal blockage, probably connected to his prematurity (scarring from a g-tube). This book does not have a traditional happy ending.
To my husband's chagrin, I dog-eared countless pages in this book to remember passages that resonated with me:
--The doctors often do not mention the lasting complications or lifelong disabilities that micropreemies can face...and that "two babies born on the same day at the same birth weight can have two absolutely different outcomes." We grew well aware of this in the NICU, as other babies appeared to do better than Chris, while others did much worse. In Chris' case, we were told of the high chance of disabilities, but only a few days after his birth. We were pretty ignorant.
--Vicki Forman went into labor in much the same way I did--she ignored small signs that things were wrong, just as I did, and we both felt the resulting guilt of not following those signs soon enough.
--One chapter opens with a description of people and the categories they fall into after a preemie birth: the rocks, the wanna-be-theres, and the gingerbread men. The rocks attempt to do everything they can to provide support and love. The wanna-be-theres want to help but don't know how. They often say the wrong thing. And the gingerbread men--they run, run, run as fast as they can away from you. We knew people in all three categories when Chris was born. Some people we hardly knew were rocks. And some people turned out to be gingerbread men. As our close friends (who lost a 23-weeker after 1 week of life) say, "grief reorders your address book." This is true whether it's grief from death, or grief from loss of a "normal" experience.
--Forman worries about what Evan must feel, lying alone in his hospital isolette, and wondering where his twin has gone. Evan was always nonverbal, so I suppose she never found out if Evan missed his twin in his very core of being. I suspect he did.
--I could so relate to Forman's frustration with the nazi nurse who told her she had to take her daughter to the other end of the hallway on a day when siblings were not allowed to visit (even though they were not visiting, but merely restocking breast milk in the refrigerator). I got so mad at certain nurses for similar reasons. I will never forget those feelings of rage.
--"They say it's your baby, but until you go home it's not your baby."
--I sobbed when I read about the first time Forman saw Evan's bare face (when they extubated him). I too remember the first time I saw Christopher's face without a tube forced down his throat. And how normal baby breaths, baby coughs, and baby sneezes could become.
--I remember how when we first got to start holding Christopher when he was about 6 weeks old, we had to alternate days--an hour per day...and how much I ached to hold him longer than that, every single day.
--I remember seeing some of the monster babies in the NICU and wondering what could possibly be wrong with them--they were so huge! Forman has the same feeling about such a baby and her mom, only to grow close to that family and learn their story, a difficult one, too.
--The many doctors calling Evan "the baby" instead of his name reminded me of one neonatologist who cared for Chris who had that very annoying habit. It bothered me so much that I finally spoke to a nurse about it, and she passed the feedback along to him. Bless him--he started using Christopher's name after that.
--Forman writes about how bizarre that the world can go on around her while she grieves for her baby girl. I could relate to this feeling. I stopped reading the comic pages when Chris was in the NICU. They just weren't funny any more. When women complain about minor pregnancy symptoms or make jokes about wanting their babies to come early, I am not amused.
Vicki Forman and I approached the prospect of having premature babies in very different ways. When I went into premature labor, we were given the option to have a c-section (and give him a 50% chance of survival--although these statistics were, at best, a guess, and no chance of disabilities was mentioned) or to have a vaginal birth and risk certain death. We chose the c-section, and we wanted them to do everything possible to save him.
I believe our approach was due to three factors: (1) our complete ignorance about what we were facing--I believe Forman had a much better understanding of the risks involved, (2) a generally optimistic belief system, and (3) our belief that everything happens for a reason, and that whatever happened was meant to be. If the doctors had told us that he would have a 90% chance of disability, would that have changed our mind? But what is a disability? Wearing glasses? A learning disability? Cerebral palsy? Blindness? It could be any or several of those. No one could predict what would happen.
Even though we approached our children's births in very different frames of mind, I deeply admire and respect the choices Forman made (or tried to make), and even more, her brutal honesty about why she made that choice. This book brings to light one of the many challenges of saving these very early preemies. Parents need to be informed of what's at risk and what the potential cost could be. As much as I didn't want to hear all the scary statistics during the NICU experience, I believe it's important for parents to understand the full picture and how things could turn out--just as they need to understand that these are only statistics and no one has a clear crystal ball. Our son Chris is an excellent example of a baby that no one would have expected to do so well. We have friends whose 24-weekers have serious medical and developmental issues.
The doctors are only there for a short time in these children's lives. But the parents are the ones who are there forever--whose lives are never the same. Forman loved her son passionately, even though at first she did not want heroic measures. Whether she would have made the same choices if she were faced with the same at-risk birth again, I do not know. This book is a wonderful tribute to what turned out to be a lovely, but tragically short, life of her son.
October 1, 2010
An essential read for any NICU nurse or doctor. The author tells the story of having 23 week twins and their long stay in the NICU. She delves into many of the ethical dilemmas faced in the NICU, ultimiately deciding to remove her daughter from life support when she learns the baby has grade four bleeds. Her son ends up staying in the NICU for months and months and finally goes home with severe developmental delays and medical challenges. He continues to be in and out of the hospital, suffering with reflux, blindness, and chronic lung disease. The author is very good at telling her story and she brings new light to how parents of ill children feel. She learns how to be an advocate for her child and how to get him the medical attention he needs. This book inspired me as a NICU nurse to have compassion on the parents I work with and to realize that when I get to clock out at the end of the day, they do not. Ultimately, the parents are the one who have to take their child home and learn how to care for them. This book changed the way I work as a nurse and reminded me to always include the parents in everything I do.
June 24, 2016
As the mama of 23 week twins who were not taken to the NICU, I absolutely could not put this book down. Just as the author dares to wonder what her life would have been without heroic measures, she gave me a glimpse of the life I always suspected lay on the other side of our family's circumstantial door. The what ifs of this kind of parenthood are a constant plague, and she does such a brilliant job of demonstrating how we all love our children as fiercely and as long as we possibly can, even in the moments all our choices are stripped away.
December 30, 2009
Stunning, breathtaking, and absolutely heartbreaking. Forman's memoir of the premature birth of her twins was beautiful and so, so sad. I had to put the book down and walk away from it because I could not stop sobbing.
October 30, 2010
I didn't love the tone of this book because I didn't get a sense that the Foreman loved her child, just that she was angry about the hand she had been dealt. She never appeared to value her son as an individual but instead seemed to measure him only by the sum of his disabilities.
June 29, 2009
Astonishing.
September 12, 2017
Excellent book about the true journey of twins born at week 24.
March 11, 2021
I enjoyed reading this book because it made me think about moral dilemmas created by modern medicine, specifically for parents. While I may never be a Mom, I do like learning about all kinds of life experiences and I did learn a lot from this memoire. As medicine develops to increase survival from all kind of maladies, does it decide FOR us and our unborn children when to live or die? After the doctors and nurses save your babies life in an extreme early term delivery, do they give the parent back a life that wouldn't have been or lifetime of ailments that wouldn't have been? I've been contemplating these unanswerable questions since reading this book.
The author does a great job reflecting on all the emotions and heartbreaking decisions her and her husband had to make throughout Evan's NICU stay and multiple surgeries at such a delicate early stage of life. She also describes well her stages of grief for her daughter and denial of her son's devastating heath problems.
While this book might be too much for an expecting Mother or any parent, it was a moving and enlightening story from the Mother's point of view.
The author does a great job reflecting on all the emotions and heartbreaking decisions her and her husband had to make throughout Evan's NICU stay and multiple surgeries at such a delicate early stage of life. She also describes well her stages of grief for her daughter and denial of her son's devastating heath problems.
While this book might be too much for an expecting Mother or any parent, it was a moving and enlightening story from the Mother's point of view.
November 21, 2020
A powerful and deeply moving account of caring for twins who were born at 23/24 weeks, just at the threshold of viability. Vicki Forman's prose is clear-eyed and wonderfully perceptive, and her writing brings you into those first few months in the NICU and the shock and anger and love she felt as her babies suffered from conditions associated with their prematurity. She loses her daughter within days, and her son survives for eight years, but with serious long-term disabilities. Forman's book is a fierce account of a mother who overcomes her shock and her anger and who finds the grace inside herself to do right by her child. Her husband and older daughter are present in the book, but not central to the narration. This is really her story, and it has stayed with me.
This entire review has been hidden because of spoilers.
September 7, 2022
This is the story of a mom who has twins at an early gestational age and then the fight that follows. At first she wants to sign a DNR for both babies and let them die because she thought it was too early for them to live a good life, but then she changed her mind. One twin dies anyway and the other one is severely disabled. I almost feel like the title of this book is meant to be sarcastic because this wasn't the most positive book. In fact I'm not really sure if this served a purpose beyond being cathartic for the author and highlighting some of the ethical issues in NICU care. As a current NICU mom, I felt part of this relatable, but overall I have read more impactful and inspiring memoirs of this challenging time.
November 27, 2020
Vicki Forman writes a raw and heart-breaking account of the birth of her extremely premature twins born "on the edge of viability." Her honest and emotional reactions are relatable - I imagine that I would feel how she did had I gone through what she had. Through the unbearable pain and suffering, there is also love, and dare I say it... joy. Upon finishing this book, the reader is made to reflect on the fragility of life, and what it truly means to be a mother, no matter the circumstances. Thank you for having the courage to share your story.
August 5, 2018
Beautiful. Heartbreaking. The part that made me cry? The giving of the handbag, because it was such a simple act of kindness in a maelstrom of heartache.
December 21, 2018
heart-wrenching and incredible
September 18, 2019
Five stars for this stunning heartbreaker.
November 9, 2019
Compelling
I’m not even a mother but this mother’s story captivated me. Kudos to any mom who has had premature babies or Chavez list a child.
I’m not even a mother but this mother’s story captivated me. Kudos to any mom who has had premature babies or Chavez list a child.
March 13, 2023
Apparently read this before in 2011 but don’t remember reading it then. A very compelling read, about 23- week gestation twins. The parents begged the doctors to let them die, but the doctors refused, citing this and that reason and pressuring the parents with slim hopes. As it turns out, the girl died a few days after birth, and the boy had (no surprise) a plethora of medical complications and died just before his 8th birthday. Not only very well written and articulately presents the competing pulls and pushes the parents endure, but also how the mom grows very attached to this blind, very disabled boy that she had wanted to die at birth. (PS The influence of author’s psychiatrist dad is evident, in her insights and ability to describe her inner state[s] )
April 27, 2013
As a memoir of one woman's experiences with premature infants, including loss and suffering, the book succeeds admirably. There is raw truth here, and courage, and grief, and a keen sense of outrage at the circumstances in which Vicki Forman found herself. For anyone interested in health care (and its problems), medical authority, understandings of "life," infant mortality, reproductive politics, and motherhood, there is much here to provoke thinking and dialogue. Throughout, we see how Forman and her family are caught up in institutional and cultural forces bigger than them, forces that challenge our notions of survival, quality of life, marriage, faith, and motherhood.
Where I found the book lacking was in Forman's portrayal of the other people in her life...her husband, her son, her older daughter. None of these characters in the story really come to life. They appear, and then disappear, from the narrative, never staying long enough for readers to build a connection to them. Evan, particularly, is a puzzle, despite most of the book being devoted to him. Throughout the narrative, he is less fully realized person than object or problem (and maybe this is the nature of this particularly constellation of disabilities). Forman occasionally hints at his personality, but we don't get enough to sense who he is. Ditto for Forman's husband, to whom this tragedy also happened...but we only see him through Forman's eyes.
While this catastrophic set of circumstances clearly affected this entire family, this is really a book of one woman's experience of motherhood. And maybe that's okay, given how much of the caretaking of any child typically falls to women...but the story would have had more texture for me if Forman's family members had been more vividly rendered.
Where I found the book lacking was in Forman's portrayal of the other people in her life...her husband, her son, her older daughter. None of these characters in the story really come to life. They appear, and then disappear, from the narrative, never staying long enough for readers to build a connection to them. Evan, particularly, is a puzzle, despite most of the book being devoted to him. Throughout the narrative, he is less fully realized person than object or problem (and maybe this is the nature of this particularly constellation of disabilities). Forman occasionally hints at his personality, but we don't get enough to sense who he is. Ditto for Forman's husband, to whom this tragedy also happened...but we only see him through Forman's eyes.
While this catastrophic set of circumstances clearly affected this entire family, this is really a book of one woman's experience of motherhood. And maybe that's okay, given how much of the caretaking of any child typically falls to women...but the story would have had more texture for me if Forman's family members had been more vividly rendered.
April 28, 2013
I found this book after we lost our baby, finding out at our 19-week gender scan that the baby had been gone for five weeks. In a desperate attempt to make sense of my own loss, to connect in some way with the sorority of heartache that us "loss moms" belong to, I grabbed up this book and subsequently devoured it. I was spellbound by it's words and by Forman's raw prose and painful journey. The transformation that takes place in her is one I hope I see occur in my own heart someday.
After going into labor with twins (a boy and a girl) at 23 weeks, Vicki Forman begs the doctors to just let her babies go, knowing the formidable obstacles they'll have to face just to survive. The doctors encourage her not to sign a DNR and in the aftermath of her severely premature delivery, her daughter dies after four days; her son survives. The story that follows is a dual tale of grieving the loss of her daughter and clinging to the hope that her son will pull through somewhat unscathed. Unfortunately, his survival is fraught with the medical issues that often plague severely premature babies.
There were so many times while reading this book that I wanted to put the book down, the sadness that pervaded the beginning of the story too palpable. But you can't help yourself, Forman pulls you in and doesn't let you go. My soul was in such turmoil when I read this book, and in so many ways, it still is. I felt comforted by her words and her feelings, by every detail of her brokenness. In the end, Forman finds peace and I think I did, too. Through her sorrow and eventual reawakening, I found my own road to solace.
I recommend this book to anyone that has suffered the loss of a baby or child, and anyone that wants to glimpse the truths that can only come from losing a child.
After going into labor with twins (a boy and a girl) at 23 weeks, Vicki Forman begs the doctors to just let her babies go, knowing the formidable obstacles they'll have to face just to survive. The doctors encourage her not to sign a DNR and in the aftermath of her severely premature delivery, her daughter dies after four days; her son survives. The story that follows is a dual tale of grieving the loss of her daughter and clinging to the hope that her son will pull through somewhat unscathed. Unfortunately, his survival is fraught with the medical issues that often plague severely premature babies.
There were so many times while reading this book that I wanted to put the book down, the sadness that pervaded the beginning of the story too palpable. But you can't help yourself, Forman pulls you in and doesn't let you go. My soul was in such turmoil when I read this book, and in so many ways, it still is. I felt comforted by her words and her feelings, by every detail of her brokenness. In the end, Forman finds peace and I think I did, too. Through her sorrow and eventual reawakening, I found my own road to solace.
I recommend this book to anyone that has suffered the loss of a baby or child, and anyone that wants to glimpse the truths that can only come from losing a child.
August 29, 2009
I have no children, I will never be a mother and I knew how the book ended before I started, but I could not put this book down.
Vicki Forman's story of delivering and caring for her extremely premature twins is both gut-wrenching and inspiring in equal measure. The number of medical setbacks and complications that the author and her family have to get through is unbelievable. Somehow, she always finds the strength not only to get through each situation, but to be an advocate for her children at the same time.
There are a few weakness to the book. The author glosses over the financial aspect of her childrens' care and I would have loved to have heard more about this. I was left wondering how her family was impacted by the expense of the incredible amount of care her children needed. At the same time, I wondered whether children from families not as well-situated as the author would have received the same level of care. This is especially relevant given today's healthcare debates. This is a minor complaint, though, as I realize this book is a personal memoir and not a book about current affairs.
When I first started reading this book, I thought I would never recommend it to anyone expecting a child. Now I think maybe it should be required reading because it can inspire parents to realize that nothing is insurmountable.
Vicki Forman's story of delivering and caring for her extremely premature twins is both gut-wrenching and inspiring in equal measure. The number of medical setbacks and complications that the author and her family have to get through is unbelievable. Somehow, she always finds the strength not only to get through each situation, but to be an advocate for her children at the same time.
There are a few weakness to the book. The author glosses over the financial aspect of her childrens' care and I would have loved to have heard more about this. I was left wondering how her family was impacted by the expense of the incredible amount of care her children needed. At the same time, I wondered whether children from families not as well-situated as the author would have received the same level of care. This is especially relevant given today's healthcare debates. This is a minor complaint, though, as I realize this book is a personal memoir and not a book about current affairs.
When I first started reading this book, I thought I would never recommend it to anyone expecting a child. Now I think maybe it should be required reading because it can inspire parents to realize that nothing is insurmountable.
June 8, 2010
This book was recommended to me during a class I took for my job. In the class we were learning about new machines and treatments that give extremely premature babies the chance to live. This book presents the same story from a different point of view, a mother’s.
Due to an untreatable infection, Vicki goes into premature labor at 23 weeks gestation with twins. Realizing the huge challenges encountered by babies who are born so very early, she begs the medical staff to not take any heroic measures. She pleads with them to let her babies die peacefully. The nurses quickly tell her that California law requires resuscitation of all newborns, and that she has no say in the matter.
And that is how the story begins. The story of, in her words, “the one who died and the one who did not.” One twin dies a few days after delivery, and the other lives for eight years. He encounters nearly every imaginable complication. Evan’s life is full of surgeries, hospitals, pain, seizures, machines, tests, and medications. This story was written to be, and certainly is, a compelling argument regarding medical treatments that provide quantity of life but certainly not quality.
Vicki presents a profoundly sad story that is also full of hope. It’s a memoir about unconditional love.
Due to an untreatable infection, Vicki goes into premature labor at 23 weeks gestation with twins. Realizing the huge challenges encountered by babies who are born so very early, she begs the medical staff to not take any heroic measures. She pleads with them to let her babies die peacefully. The nurses quickly tell her that California law requires resuscitation of all newborns, and that she has no say in the matter.
And that is how the story begins. The story of, in her words, “the one who died and the one who did not.” One twin dies a few days after delivery, and the other lives for eight years. He encounters nearly every imaginable complication. Evan’s life is full of surgeries, hospitals, pain, seizures, machines, tests, and medications. This story was written to be, and certainly is, a compelling argument regarding medical treatments that provide quantity of life but certainly not quality.
Vicki presents a profoundly sad story that is also full of hope. It’s a memoir about unconditional love.
July 9, 2016
I had a similar experience to the author of this book, giving birth to twins at twenty three weeks. I clung to this book for dear life in the months and years following that experience. Because I hoped, simultaneously, for both life and death for those two tiny people who were my children. This book was an honest reflection of that ambivalence, that sudden plunge into an icy cold motherhood that nobody expects or plans for.
'I had only one wish: to let them go.'
But, as the author and I were to discover, that choice is often not ours to make.
Those fuzzy miracle baby stories you read in the newspapers don't come close to the gut wrenching experiences of life in the neonatal intensive care unit. Because it is no picnic, what those babies go through, for very uncertain outcomes. It is absolutely brutal and there are no guarantees.
That is the beauty of this book. It is unflinching and I am grateful for that. With some experiences there are no neat endings. This book has never left my thoughts over the years since my own twins were born and is a source of comfort to me still.
'I had only one wish: to let them go.'
But, as the author and I were to discover, that choice is often not ours to make.
Those fuzzy miracle baby stories you read in the newspapers don't come close to the gut wrenching experiences of life in the neonatal intensive care unit. Because it is no picnic, what those babies go through, for very uncertain outcomes. It is absolutely brutal and there are no guarantees.
That is the beauty of this book. It is unflinching and I am grateful for that. With some experiences there are no neat endings. This book has never left my thoughts over the years since my own twins were born and is a source of comfort to me still.
January 23, 2015
The main reason I read this book, was that I decided to do a challenge to read certain books throughout the year, and one of the challenges was to read a book by an author with my same initials. I looked through the catalog of books at the Library and came across this one, and then read a synopsis of the book, and knew I needed to read it.
I am glad I read it, but it made me realize that I fell down on something I received by revelation many years ago, that I need to write a book of what I know. This book in a way mirrors a lot of what I would write about Hanna's premature birth, but there are so many differences. Like my trust in the Plan of Salvation and the Gospel. I think I still need to write it, so I'm glad I have my journals and other things I've written over the years. My perspective on what we all went through 31 years ago is not totally forgotten, things have changed, but I am thankful Hanna was and is a part of our lives. And I recommend this book to everyone who's life has been touched by premature birth.
I am glad I read it, but it made me realize that I fell down on something I received by revelation many years ago, that I need to write a book of what I know. This book in a way mirrors a lot of what I would write about Hanna's premature birth, but there are so many differences. Like my trust in the Plan of Salvation and the Gospel. I think I still need to write it, so I'm glad I have my journals and other things I've written over the years. My perspective on what we all went through 31 years ago is not totally forgotten, things have changed, but I am thankful Hanna was and is a part of our lives. And I recommend this book to everyone who's life has been touched by premature birth.
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