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A Life Beyond Reason: A Father's Memoir
An unflinching and luminous memoir that explores a father’s philosophical transformation when he must reconsider the questions what makes us human? and whose life is worth living?
Before becoming a father, Chris Gabbard was a fast-track academic finishing his doctoral dissertation at Stanford. A disciple of Enlightenment thinkers, he was a devotee of reason, believed in the reliability of science, and lived by the dictum that an unexamined life is not worth living. That is, until his son August was born.
Despite his faith that modern medicine would not fail him, August was born with a severe traumatic brain injury as a likely result of medical error and lived as a spastic quadriplegic who was cortically blind, profoundly cognitively impaired, and nonverbal. While Gabbard tried to uncover what went wrong during the birth and adjusted to his new role raising a child with multiple disabilities, he began to rethink his commitment to Enlightenment thinkers—who would have concluded that his son was doomed to a life of suffering. But August was a happy child who brought joy to just about everyone he met in his 14 years of life—and opened up Gabbard’s capacity to love. Ultimately, he comes to understand that his son is undeniably a person deserving of life.
A Life Beyond Reason will challenge readers to reexamine their beliefs about who is deserving of humanity.
Before becoming a father, Chris Gabbard was a fast-track academic finishing his doctoral dissertation at Stanford. A disciple of Enlightenment thinkers, he was a devotee of reason, believed in the reliability of science, and lived by the dictum that an unexamined life is not worth living. That is, until his son August was born.
Despite his faith that modern medicine would not fail him, August was born with a severe traumatic brain injury as a likely result of medical error and lived as a spastic quadriplegic who was cortically blind, profoundly cognitively impaired, and nonverbal. While Gabbard tried to uncover what went wrong during the birth and adjusted to his new role raising a child with multiple disabilities, he began to rethink his commitment to Enlightenment thinkers—who would have concluded that his son was doomed to a life of suffering. But August was a happy child who brought joy to just about everyone he met in his 14 years of life—and opened up Gabbard’s capacity to love. Ultimately, he comes to understand that his son is undeniably a person deserving of life.
A Life Beyond Reason will challenge readers to reexamine their beliefs about who is deserving of humanity.
240 pages, Hardcover
Published May 28, 2019
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Displaying 1 - 19 of 19 reviews
November 13, 2024
This book was written by one of my previous English professors. I also have a step dad who has a disability so this book hits more of a personal spot for me. This book made me feel seen and understood in some ways. Although, I have not gone through the exact same situations as discussed in this book, I can relate to many things.
He describes the anger he felt for how his son was treated at times. It is hard to see your loved one struggle so much and then have to deal with others being unkind to them. He discussed the ways in which some people think about people with disabilities and their misunderstandings about what it means to have a disability. He discusses multiple perspectives about what it means to be human. He discusses his wrestling with this as some of those meanings meant that his son was not viewed as a human.
It really opened up my eyes and helped me to remember to find joy in the small things. I found parallels in my stepdad and his son in how they both may have experienced pain but kept smiling. This reminds us to keep going.
He describes the anger he felt for how his son was treated at times. It is hard to see your loved one struggle so much and then have to deal with others being unkind to them. He discussed the ways in which some people think about people with disabilities and their misunderstandings about what it means to have a disability. He discusses multiple perspectives about what it means to be human. He discusses his wrestling with this as some of those meanings meant that his son was not viewed as a human.
It really opened up my eyes and helped me to remember to find joy in the small things. I found parallels in my stepdad and his son in how they both may have experienced pain but kept smiling. This reminds us to keep going.
November 10, 2020
This book is a very real depiction of a family caring for a child with disabilities, the author articulates very clearly the struggles and challenges that the family faced, and more importantly how it challenges his perspective on the worthiness of one’s life.
In this book, Chris portrayed himself as a person that endorsed the era of enlightenment proudly, and considers himself a devotee of reason, he goes as far as to suggest that people who didn’t conduct their lives in the lights of reason is unspeakably stupid – p11. He embraces the mantra “The unexamined life is not worth living”, not knowing that this supposedly universal truth will be challenged by a supposedly joyous moment that turned out to be a life altering experience, the birth of August.
August’s birth was met with a string of unfortunate events, perhaps, due to negligence of care by the medical team, or just a sad twist of fate that could not have been prevented. The author certainly wants his reader to take the former position than the latter. In his book he spends the early chapters narrating the possible lapse in care during the days leading up to the delivery of August, and the at the final chapters concluded the seemingly undeniable facts that August’s unfortunate events may have very well be prevented if more care was being considered.
In the book, Chris also shared how he goes through a series of re-examining his views of what constitutes a person, though he appeared to have suggest his former views were concluded prematurely, it appears to me his change of perspective is concluded rather naively and may have linger with a tinge of biasness in view of his own life-experience.
There are few incidents that unquestionably makes me wonder have the author indeed accepted that the worthiness of life goes beyond having the ability to reason, this can be seen not just in his inability coming to an acceptance on the series of events that happened during August birth but also the whole-hearted motivation to cure or improve August’s condition that led to more complications and August’s eventual death. This is indeed a very real dilemma, by embracing the abnormalities of his own son will mean forgoing the possibility of a better outcome through treatment, but at the same time it will mean that one has to agree that the disability is not a matter of being different but abnormal. A hard pill to swallow indeed.
One of my pet peeves against this book is the seemingly misleading title of the book, the author sadly did not seem to convey a convincing message that the worthiness of life is beyond reason, rather more on his unhappiness on the lapse in the medical scene that resulted in the death of August.
Though this doesn’t necessarily mean that this isn’t a book worth reading, it is more suited for reader who may want to know more about the struggles caring for person with disability, it also functions as a means for parents with disabled child to relate. Nevertheless, the book provided multiple pointers that are worth discussing
1) The concept of impairment vs disability – Impairment “is the physical fact of lacking”, e.g lacking an arm or a leg; disability is the social process that turns an impairment into a negative by creating barrier, e.g. a building without a ramp turns mobility impairment into a disability
Though that being said, I’m still rather reserved to say the least that disability is due to a social process, though that doesn’t mean that as a society we cannot progress to alleviate one’s impairment or even negate their impairment issues, but the fact that an active action is require over a passive suggests that the flow is reversed. Such as the process of needing the societal progress to ensure the impairment doesn’t become a disability and not the other way round.
2) There are also the different ideas of impairment, not just in types but also in degree, which makes advocacy for disability rather complex, you have on one hand an advocacy to become independent for some by incorporating certain measures, at the same time you have August who is unable to live independently, as most advocacy work bundle them together even though within the disabled community there are disagreements in what is best for their community.
3) The concept of personhood, in this book, the author cited Peter Singer’s definition of a person, it equates personhood with the ability to be self-reliant, having the sense of autonomy, and a sense of individuality. In other words, a self-conscious entity with the awareness of itself. Of course, this will mean August is being treated less of a person, and in the most controversial stance, not worth living. This is indeed a contentious topic, even for myself, as my wife works closely with students who are like August, accepting Singer’s position will mean these students are not worth living. In this sense, the author attempted to offer a view that a life’s worthiness goes beyond one’s ability of self-consciousness, but imo, is still a hard case to argue.
4) Pure pragmatism could lead to inhumanity, in the name of being practical, we may unknowingly subscribe to a state of transactional that devoid of any humane values. Sacrifice without gaining is not only impractical but foolish, however, it is also precisely having no intention to gain from an act is what make us humane. This Is perhaps what it means to go beyond reasons, the effort to love unconditionally that goes beyond a transactional state that focuses on a the relational aspects of life. Seeing things beyond the binary choices of dependence Vs independence, but an third alternative of interdependence.
5) The concept of care and cure, in most medical intervention there’s this component of care and cure, sometimes, we are faced with a dichotomy to favour one over another, the concept of cure is associate with an effort to correct an underlying condition, in contrast, the concept of care, encompasses the overall well-being of the person. In this sense, although the author participates in the caring of August, he doesn’t appear to see beyond the underlying condition of August, which led to the unwise decision to aggressive treat August. Such is the case of pseudo-empathic behaviour, a behaviour that masked to look like being empathic but is motivated by a desire to get rid of the unwanted negative feeling within oneself.
In summary, this book provides a good depiction of the struggles and challenges of caring people with disabilities, at the same time provide pointers for discussion, however, it does not convey the intended message as suggested by the book title, there is nothing much about the concept of beyond reason.
In this book, Chris portrayed himself as a person that endorsed the era of enlightenment proudly, and considers himself a devotee of reason, he goes as far as to suggest that people who didn’t conduct their lives in the lights of reason is unspeakably stupid – p11. He embraces the mantra “The unexamined life is not worth living”, not knowing that this supposedly universal truth will be challenged by a supposedly joyous moment that turned out to be a life altering experience, the birth of August.
August’s birth was met with a string of unfortunate events, perhaps, due to negligence of care by the medical team, or just a sad twist of fate that could not have been prevented. The author certainly wants his reader to take the former position than the latter. In his book he spends the early chapters narrating the possible lapse in care during the days leading up to the delivery of August, and the at the final chapters concluded the seemingly undeniable facts that August’s unfortunate events may have very well be prevented if more care was being considered.
In the book, Chris also shared how he goes through a series of re-examining his views of what constitutes a person, though he appeared to have suggest his former views were concluded prematurely, it appears to me his change of perspective is concluded rather naively and may have linger with a tinge of biasness in view of his own life-experience.
There are few incidents that unquestionably makes me wonder have the author indeed accepted that the worthiness of life goes beyond having the ability to reason, this can be seen not just in his inability coming to an acceptance on the series of events that happened during August birth but also the whole-hearted motivation to cure or improve August’s condition that led to more complications and August’s eventual death. This is indeed a very real dilemma, by embracing the abnormalities of his own son will mean forgoing the possibility of a better outcome through treatment, but at the same time it will mean that one has to agree that the disability is not a matter of being different but abnormal. A hard pill to swallow indeed.
One of my pet peeves against this book is the seemingly misleading title of the book, the author sadly did not seem to convey a convincing message that the worthiness of life is beyond reason, rather more on his unhappiness on the lapse in the medical scene that resulted in the death of August.
Though this doesn’t necessarily mean that this isn’t a book worth reading, it is more suited for reader who may want to know more about the struggles caring for person with disability, it also functions as a means for parents with disabled child to relate. Nevertheless, the book provided multiple pointers that are worth discussing
1) The concept of impairment vs disability – Impairment “is the physical fact of lacking”, e.g lacking an arm or a leg; disability is the social process that turns an impairment into a negative by creating barrier, e.g. a building without a ramp turns mobility impairment into a disability
Though that being said, I’m still rather reserved to say the least that disability is due to a social process, though that doesn’t mean that as a society we cannot progress to alleviate one’s impairment or even negate their impairment issues, but the fact that an active action is require over a passive suggests that the flow is reversed. Such as the process of needing the societal progress to ensure the impairment doesn’t become a disability and not the other way round.
2) There are also the different ideas of impairment, not just in types but also in degree, which makes advocacy for disability rather complex, you have on one hand an advocacy to become independent for some by incorporating certain measures, at the same time you have August who is unable to live independently, as most advocacy work bundle them together even though within the disabled community there are disagreements in what is best for their community.
3) The concept of personhood, in this book, the author cited Peter Singer’s definition of a person, it equates personhood with the ability to be self-reliant, having the sense of autonomy, and a sense of individuality. In other words, a self-conscious entity with the awareness of itself. Of course, this will mean August is being treated less of a person, and in the most controversial stance, not worth living. This is indeed a contentious topic, even for myself, as my wife works closely with students who are like August, accepting Singer’s position will mean these students are not worth living. In this sense, the author attempted to offer a view that a life’s worthiness goes beyond one’s ability of self-consciousness, but imo, is still a hard case to argue.
4) Pure pragmatism could lead to inhumanity, in the name of being practical, we may unknowingly subscribe to a state of transactional that devoid of any humane values. Sacrifice without gaining is not only impractical but foolish, however, it is also precisely having no intention to gain from an act is what make us humane. This Is perhaps what it means to go beyond reasons, the effort to love unconditionally that goes beyond a transactional state that focuses on a the relational aspects of life. Seeing things beyond the binary choices of dependence Vs independence, but an third alternative of interdependence.
5) The concept of care and cure, in most medical intervention there’s this component of care and cure, sometimes, we are faced with a dichotomy to favour one over another, the concept of cure is associate with an effort to correct an underlying condition, in contrast, the concept of care, encompasses the overall well-being of the person. In this sense, although the author participates in the caring of August, he doesn’t appear to see beyond the underlying condition of August, which led to the unwise decision to aggressive treat August. Such is the case of pseudo-empathic behaviour, a behaviour that masked to look like being empathic but is motivated by a desire to get rid of the unwanted negative feeling within oneself.
In summary, this book provides a good depiction of the struggles and challenges of caring people with disabilities, at the same time provide pointers for discussion, however, it does not convey the intended message as suggested by the book title, there is nothing much about the concept of beyond reason.
August 29, 2019
This memoir of a father's years with his severely handicapped son should be depressing-but i isn't. It's a story of love and, ultimately faith.
January 13, 2020
A devastating, moving memoir about the ethics of caregiving that is both accessible and intimately vulnerable. A powerful read in the face of current healthcare debates and disability activism.
October 4, 2020
Beautifully written - but man, be prepared to have all your heart strings pulled. I laughed, I cried, and mostly I got ridiculously angry.
June 8, 2019
This book is a beautiful account of a father’s intellectual and spiritual journey. Existential questions about life’s meaning are thoroughly explored through a prism of a non-believer and a rational thinker.
Chris’s brilliant storytelling sets a page-turning cadence. I was instantly hooked by the bursts of factual information followed by reflective and deeply philosophical analyses.
I read the book from the perspective of someone who met the author’s family. The acquaintanceship didn’t form on any specific date. When living in San Marco area I used to drive by the author’s house daily. On a couple of occasions I caught a glimpse of August using a Rifton device to walk along the driveway with the assistance of a caregiver. Comparing the timeframe of my living in the neighborhood with that of the events from the book, it would have been the time before the Relaxanoid pump was implanted in August. A few years later, my 13 year old daughter would tell me that on her early morning runs she always waved at Clio’s mom who walked the dog along the duck pond. This would have been after August’s death when the family welcomed the emotional support of a dog. I vaguely remember assuming that Clio was a girl either from my daughter’s school or the ballet studio. Just this past year my daughter was part of the ballet performance where Clio danced in the main role and I finally realized that it was Clio whose mom my daughter waved at during her morning runs. At that time I still had not known anything about August. Several months later, my husband and I found ourselves at a ballet fundraiser socializing with the author and his wife. In a conversation about post graduate education and Chris’s teaching career at UNF, the story of August came up in a context of his upcoming book. At a loss for words to express my sympathy and admiration for Chris’s and Ilene’s strength and poise, I uttered “I cannot even imagine...”. Now after reading the book, I sincerely hope those worlds didn’t come across as anything but the expression of deep compassion.
So tenderly and lovingly written, the book offered an enriching experience for me. As a non-believer myself, the subject of life’s meaning has always lingered in my thoughts. Following Chris’s initial logical approach aligned with Enlightenment movement was like traveling a familiar path but now with an articulate tour guide who pointed out new surprising nuances.
Chris’s turbulent and complicated search for a meaning of August’s life led him to self-discovery and personal growth where the path of logic and reason proved inadequate.
Chris mentions Socrates’s quote, “The unexamined life is not worth living" and implies that some may argue that a severely impaired individual’s life is not worth living. The quote always presented me with a problem which Chris has visited throughout the book. What level of ability (cognitive, physical, emotional, etc) of an examiner is sufficient in order to “examine life”?
While in a state of conflict between the rationality on the one hand and overflowing love and affection on the other, Chris recognized the deficiency of the logical approach and accepts that “the spirit dwells” in everyone.
Chris’s brilliant storytelling sets a page-turning cadence. I was instantly hooked by the bursts of factual information followed by reflective and deeply philosophical analyses.
I read the book from the perspective of someone who met the author’s family. The acquaintanceship didn’t form on any specific date. When living in San Marco area I used to drive by the author’s house daily. On a couple of occasions I caught a glimpse of August using a Rifton device to walk along the driveway with the assistance of a caregiver. Comparing the timeframe of my living in the neighborhood with that of the events from the book, it would have been the time before the Relaxanoid pump was implanted in August. A few years later, my 13 year old daughter would tell me that on her early morning runs she always waved at Clio’s mom who walked the dog along the duck pond. This would have been after August’s death when the family welcomed the emotional support of a dog. I vaguely remember assuming that Clio was a girl either from my daughter’s school or the ballet studio. Just this past year my daughter was part of the ballet performance where Clio danced in the main role and I finally realized that it was Clio whose mom my daughter waved at during her morning runs. At that time I still had not known anything about August. Several months later, my husband and I found ourselves at a ballet fundraiser socializing with the author and his wife. In a conversation about post graduate education and Chris’s teaching career at UNF, the story of August came up in a context of his upcoming book. At a loss for words to express my sympathy and admiration for Chris’s and Ilene’s strength and poise, I uttered “I cannot even imagine...”. Now after reading the book, I sincerely hope those worlds didn’t come across as anything but the expression of deep compassion.
So tenderly and lovingly written, the book offered an enriching experience for me. As a non-believer myself, the subject of life’s meaning has always lingered in my thoughts. Following Chris’s initial logical approach aligned with Enlightenment movement was like traveling a familiar path but now with an articulate tour guide who pointed out new surprising nuances.
Chris’s turbulent and complicated search for a meaning of August’s life led him to self-discovery and personal growth where the path of logic and reason proved inadequate.
Chris mentions Socrates’s quote, “The unexamined life is not worth living" and implies that some may argue that a severely impaired individual’s life is not worth living. The quote always presented me with a problem which Chris has visited throughout the book. What level of ability (cognitive, physical, emotional, etc) of an examiner is sufficient in order to “examine life”?
While in a state of conflict between the rationality on the one hand and overflowing love and affection on the other, Chris recognized the deficiency of the logical approach and accepts that “the spirit dwells” in everyone.
November 27, 2019
Chris Hubbard’s A Life Beyond Reason was a serendipitous choice for me; I was at the library to retrieve a book on hold and walked out with two books: I ended up reading this one in a few days while the other sat untouched.
Hubbard’s memoir of the short life of and full attention to his son August, afflicted with cerebral palsy, impacted me on different levels. It is filled with literary references, and shows a wide reading of medical literature. As a resident of Jacksonville, Florida, also with Hubbard, I read of places he’d been that I’d visited, and of the city’s growth around the St. John’s river. Due to the book I’ve now visited Craig Creek, and the Phillips Cemetery. I grew to appreciate his marriage, which grew stronger as the couple, also raising a daughter not afflicted with illness, continually faced financial ruin, saw their careers stall, and lived lives of physical and emotional exhaustion serving August and labyrinth-ing through the modern medical establishment. Medicine in Hubbard’s book becomes its own character, a possible archetype of both good and evil in the Enlightenment worldview that the author lived.
I was touched by the many friendships that developed between the Hubbards and the numerous caregivers that passed through their home through the years, and was taken aback at the amount of hospital time August needed to receive to continue life.
Key throughout is the author’s deep belief in the secular Enlightenment worldview and how a life with August enabled him to see a deeper life, one containing mystery and a depth that went beyond modernity. His interaction with Peter Singer, and his review of Enlightenment thought via Foucault were powerful. Hubbard ends A Life Beyond Reason as a seeker, where atheism can no longer be a belief after being exposed to the concept/reality of grace.
The book also succeeds in that it doesn’t force the family’s story into an arc of resolution. For his wife August’s death was “a laceration in time, and no healing could ever occur.” (page 201, 2019 hardback edition). Hubbard recounts his review of August’s medical papers, with little satisfaction. A family friend, whose son took his own life, recently posted how, if she could, she’d go back and do about a thousand things differently. I can’t touch this type of familial pain, one akin to the Hubbard’s. It’s a service to the reader that anguish follows through the final chapter.
And yet…most impacting to me was the love that developed between Chris and August, one filled with dedication, one that became transcendent as the father felt he could see God through the eyes of August. It was not pointless, but was enlightened. It’s the story of a father who wrote to recover from those years, yet continues to embrace the story as it made him human in ways he could not have known had he remained untouched.
Hubbard’s memoir of the short life of and full attention to his son August, afflicted with cerebral palsy, impacted me on different levels. It is filled with literary references, and shows a wide reading of medical literature. As a resident of Jacksonville, Florida, also with Hubbard, I read of places he’d been that I’d visited, and of the city’s growth around the St. John’s river. Due to the book I’ve now visited Craig Creek, and the Phillips Cemetery. I grew to appreciate his marriage, which grew stronger as the couple, also raising a daughter not afflicted with illness, continually faced financial ruin, saw their careers stall, and lived lives of physical and emotional exhaustion serving August and labyrinth-ing through the modern medical establishment. Medicine in Hubbard’s book becomes its own character, a possible archetype of both good and evil in the Enlightenment worldview that the author lived.
I was touched by the many friendships that developed between the Hubbards and the numerous caregivers that passed through their home through the years, and was taken aback at the amount of hospital time August needed to receive to continue life.
Key throughout is the author’s deep belief in the secular Enlightenment worldview and how a life with August enabled him to see a deeper life, one containing mystery and a depth that went beyond modernity. His interaction with Peter Singer, and his review of Enlightenment thought via Foucault were powerful. Hubbard ends A Life Beyond Reason as a seeker, where atheism can no longer be a belief after being exposed to the concept/reality of grace.
The book also succeeds in that it doesn’t force the family’s story into an arc of resolution. For his wife August’s death was “a laceration in time, and no healing could ever occur.” (page 201, 2019 hardback edition). Hubbard recounts his review of August’s medical papers, with little satisfaction. A family friend, whose son took his own life, recently posted how, if she could, she’d go back and do about a thousand things differently. I can’t touch this type of familial pain, one akin to the Hubbard’s. It’s a service to the reader that anguish follows through the final chapter.
And yet…most impacting to me was the love that developed between Chris and August, one filled with dedication, one that became transcendent as the father felt he could see God through the eyes of August. It was not pointless, but was enlightened. It’s the story of a father who wrote to recover from those years, yet continues to embrace the story as it made him human in ways he could not have known had he remained untouched.
May 19, 2019
I approached this book a bit differently than many because I teach high school students very much like August. My students are all nonverbal and have severe and profound intellectual disabilities and many have physical and medical challenges also. My niece also has a daughter with similar challenges who is 9 and lives around the corner from me, so I have a family perspective also. I was very excited about reading this book, and for the most part it didn't disappoint. Because of my background, however, I wanted to hear more about handling the day-to-day living with August and how they handled different situations. I did not particularly want to read about the attempts to sue doctors and facilities in such detail. That got a bit tedious at times. It was actually rather frightening to read of all the mistakes made not only in August's birth but in his treatment, and it has not increased my faith in the health care industry. All of the errors and lack of competence was surreal at times. I learned that there are actually people who support child euthanasia, a disturbing thought in light of my job and something I have not encountered in my career, thankfully. What I did love so much about the book was reading of loving parents who supported their son, made sacrifices for him, and found joy in being with him. If you haven't spent time with these young people, you have missed an incredible experience. There are well-meaning adults, even in education, who assume these students cannot learn and who feel sorry for them. I will set anyone straight - these young adults can and do learn, and they love life and experience it to the fullest. They have taught me many lessons over the years about love and acceptance and wonder and joy. Gabbard has done a good job of giving a parent's perspective, and I would recommend it to anyone.
**I received a free copy of this book from LibraryThing in return for an unbiased review.**
**I received a free copy of this book from LibraryThing in return for an unbiased review.**
October 10, 2019
I once read a book by Meg Jay, “Supernormal” that had me emotionally and psychologically prepared for this read. From the outset, I could tell... the Father was going to be a character that I’d completely understand, at times, and at others, question everything he was doing. A father myself, I was awestruck with the demands on his, and his wife’s, time. He easily waved his hand at the sleepless nights, the constant crying, the surgeries, the consecutive hospital stays.... This family was remarkable. In the end, it’s easy to question his train of thought, why he decided to subject his son to so much and so frequently. As a parent, we are always justifying why we do what we do for our children. Normally, people say, “have you ever consulted the kid and asked how/what they feel about a situation?” When your child is non-verbal, you’re left to TRY and think, “what WOULD they want me to do for them.” Just the thought of that is crushing. While trying to provide his disabled son every opportunity for a “normal” life, he may have possibly been the cause of shortening it.
And for the Meg Jay reference, the story that is less often told are the siblings of special needs children. There was a second child in this story that was completely overlooked because there wasn’t enough time/space for her needs and her cerebral palsy-strickened older brother. Meg Jay puts them at the fore and shows how resilient the siblings have to be just to survive in a household like that. When I read this story, my eyes watered for the parents in their predicament AND for the baby sister that had a very traumatic childhood with her needs being sort of an afterthought.
And for the Meg Jay reference, the story that is less often told are the siblings of special needs children. There was a second child in this story that was completely overlooked because there wasn’t enough time/space for her needs and her cerebral palsy-strickened older brother. Meg Jay puts them at the fore and shows how resilient the siblings have to be just to survive in a household like that. When I read this story, my eyes watered for the parents in their predicament AND for the baby sister that had a very traumatic childhood with her needs being sort of an afterthought.
August 5, 2019
As the parent of a child with disabilities, I identified very emotionally with this book. This family’s story should serve as a cautionary tale for families of young children with disabilities just beginning this journey through this new life, particularly those with children who need a lot of medical intervention. Parents should never underestimate the potential destructiveness and self-interest of the medical establishment and the medical/pharmaceutical industry that is “in bed” with them. They should be forewarned that their child’s medical professionals may have motivations that have nothing to do with their child’s health or quality of life. Even as smart, informed, worldly people, this author and his wife found it very difficult at times to successfully advocate for their child.
But beyond that, this book is about understanding what makes a human life precious and valuable and worth having and knowing in one’s family and life. This author’s description of his awakening in that regard is lovely and heartfelt, and one I experienced with my own precious child. Those words of his spoke to my heart.
In practical terms, I found some of his many literary references unrelatable and perhaps a little pedantic. But I excuse that because it is his background, and it was important to his framing what happened in his life in an understandable way.
A good read that made me cry, which is always a pretty good measure for me of how good a book is.
But beyond that, this book is about understanding what makes a human life precious and valuable and worth having and knowing in one’s family and life. This author’s description of his awakening in that regard is lovely and heartfelt, and one I experienced with my own precious child. Those words of his spoke to my heart.
In practical terms, I found some of his many literary references unrelatable and perhaps a little pedantic. But I excuse that because it is his background, and it was important to his framing what happened in his life in an understandable way.
A good read that made me cry, which is always a pretty good measure for me of how good a book is.
July 11, 2023
“Just because a family member has a disability does not mean they should not be treated with love and compassion. This beautiful book describes a father’s journey from a British Enlightenment reader and devotee to a a person who is accepting and loving towards his son and the journey his son is teaching him despite his many disabilities. Even though his son cannot speak he still communicates with the author in noticeable but small ways that bring joy to his father and make their relationship closer. Richer. Deeper. Fulfilled. From my personal experience of having been mute in the past and having disabilities as well I admire and cheer on anyone who writes a family history on disabilities and their experiences of living with it. A fantastic work! It isn’t East being disabled and having vocal issues. But language is also through the body and facial expressions something much needed nowadays when words fail us sometimes. Look at your family member and read their body language, facial cues, and motions. They are telling you something. So listen and appreciate the beauty in the way they are communicating.”
July 22, 2019
I was lucky enough to win this book in a Goodreads giveaway. It has taken me a long time to finally write my review because I have such mixed feelings about its content. Chris Gabbard states soundly that he is a man of science, yet he and his wife did not insist on scientific answers during the days leading up to delivery of his son, August.
I feel this is a cautionary tale, a warning to self advocate when dealing with the medical world. I could not imagine not insisting of a physician's attendance 10-11 & 12 days after a baby's due date. It was bad enough when his wife felt no movement, worse when the nurses felt something was wrong, and worse yet when she was having acute paiand no attending felt it necessary to check it out!. I grieve for the child August might have been if the delivery had been done 11 days earlier.
Chris said he no longer had religious belief, yet he blindly trusted of OB-GYN team when they kept putting them off. Why not a sonogram at 10 days past due? When having the relaxanoid pump were there no academic papers available on its efficacy?
The dedication and love the Gabbards gave August was amazing - to say nothing of the money spent. And no medical personnel was forced to take responsibility. It took me a long time to read the book, the content provoked so much anger and resentment to the medical community.
It seems impossible that an academic would not realize how another academic's (whatever the field) main interest was in furthering his development than in anything else. The CYA statement that other patients' results could not be revealed due to confidentiality was just that CYA - case histories needn't have been given just general results of the study.
August was truly a human being - joyous and receptive. A life lost to malpractice. I sorry you
and he had to suffer so needlessly. Your enlightenment was up to you - is enlightenment necessary to a life well lived?.
The book was well written - I especially appreciated Chris's proper grammar - the subject matter prompted tremendous anger. August and Clio certainly bonded despite the many problems and had rich lives.
I feel this is a cautionary tale, a warning to self advocate when dealing with the medical world. I could not imagine not insisting of a physician's attendance 10-11 & 12 days after a baby's due date. It was bad enough when his wife felt no movement, worse when the nurses felt something was wrong, and worse yet when she was having acute paiand no attending felt it necessary to check it out!. I grieve for the child August might have been if the delivery had been done 11 days earlier.
Chris said he no longer had religious belief, yet he blindly trusted of OB-GYN team when they kept putting them off. Why not a sonogram at 10 days past due? When having the relaxanoid pump were there no academic papers available on its efficacy?
The dedication and love the Gabbards gave August was amazing - to say nothing of the money spent. And no medical personnel was forced to take responsibility. It took me a long time to read the book, the content provoked so much anger and resentment to the medical community.
It seems impossible that an academic would not realize how another academic's (whatever the field) main interest was in furthering his development than in anything else. The CYA statement that other patients' results could not be revealed due to confidentiality was just that CYA - case histories needn't have been given just general results of the study.
August was truly a human being - joyous and receptive. A life lost to malpractice. I sorry you
and he had to suffer so needlessly. Your enlightenment was up to you - is enlightenment necessary to a life well lived?.
The book was well written - I especially appreciated Chris's proper grammar - the subject matter prompted tremendous anger. August and Clio certainly bonded despite the many problems and had rich lives.
October 23, 2019
A parent confronts his every notion of the world and how it operates, and what it means to be human, when he engages fully in caring for his son born with multiple deficits and in need of lifelong care Unstinting in confronting the politics infant euthanasia such as Peter Singer (founder of PETA!), and unapologetic in describing the rage the medical community can provoke.
A must read for anyone who ever dared to offer gratuitous advice to the parent of a disabled (yes, that word is appropriate) child.
A must read for anyone who ever dared to offer gratuitous advice to the parent of a disabled (yes, that word is appropriate) child.
March 17, 2020
I recommend that everyone read this touching depiction of a father and son relationship unlike any you've experienced before. Gabbard is a skilled wordsmith who brings you on his journey in a matter-of-fact, uncondescending manner. It's easy to slip in and feel invested in the tale, and it's definitely not for the faint hearted. But you will learn so much just from reading it. I can't give this book enough praise because it's difficult to formulate all of the emotions and thoughts I felt and had throughout my reading.
September 20, 2021
I didn’t think this book would make me laugh and cry but it has done both. It is really touching and sad. This man really cared about his son a lot. He’s pro life about this situation and that is rare. His son changed a lot of his perception. It’s so amazing. Now I don’t really agree with his agnosticism but I appreciated that he was honest about it.
Content warning: bad language.
Content warning: bad language.
December 24, 2025
I was very touched by this book. I thought I understood what it meant to be a caregiver. I thought I understood because I spent years by Lisa's side, and saw first hand her experience as a caregiver. This book opened my eyes, and had me go back and reflect on what I saw and what I missed. I've completed the book, but have just started the journey of reflection.
November 27, 2025
Chis starts the road to fatherhood ambivalent towards the whole notion. An ironic SF hipster completing his doctorate on the age of enlightenment. He and Eileen, his wife do everything right pre and during pregnancy...
their son Augustus turns out to be profoundly disabled, non verbal. Yet his parents love him deeply, fail in initial attempts to sue the hospital as law firms won't take cases they feel they can't win.
Almost bankrupt themselves paying for therapies and equipment and extra help. Their own careers stall due to not being able to avail of opportunities to spend more time or travel. He describes it as living on an island where no family outing is spontaneous friends don't get it.
Sadly August dies in his teens and the family never succeed in getting justice.
their son Augustus turns out to be profoundly disabled, non verbal. Yet his parents love him deeply, fail in initial attempts to sue the hospital as law firms won't take cases they feel they can't win.
Almost bankrupt themselves paying for therapies and equipment and extra help. Their own careers stall due to not being able to avail of opportunities to spend more time or travel. He describes it as living on an island where no family outing is spontaneous friends don't get it.
Sadly August dies in his teens and the family never succeed in getting justice.
April 10, 2019
Difficult subject matter well narrated and examined
January 29, 2019
Really beautiful
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