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The Boy in the Moon: A Father's Journey to Understand His Extraordinary Son
Ian Brown’s son Walker is one of only about 300 people worldwide diagnosed with cardiofaciocutaneous (CFC) syndrome—an extremely rare genetic mutation that results in unusual facial appearance, the inability to speak, and a compulsion to hit himself constantly. At age thirteen, he is mentally and developmentally between one and three years old and will need constant care for the rest of his life.
Brown travels the globe, meeting with genetic scientists and neurologists as well as parents, to solve the questions Walker’s doctors can’t answer. In his journey, he offers an insightful critique of society’s assumptions about the disabled, and he discovers a connected community of families living with this illness. As Brown gradually lets go of his self-blame and hope for a cure, he learns to accept the Walker he loves, just as he is.
Honest, intelligent, and deeply moving, The Boy in the Moon explores the value of a single human life.
Brown travels the globe, meeting with genetic scientists and neurologists as well as parents, to solve the questions Walker’s doctors can’t answer. In his journey, he offers an insightful critique of society’s assumptions about the disabled, and he discovers a connected community of families living with this illness. As Brown gradually lets go of his self-blame and hope for a cure, he learns to accept the Walker he loves, just as he is.
Honest, intelligent, and deeply moving, The Boy in the Moon explores the value of a single human life.
304 pages, Hardcover
First published April 28, 2009
84 people are currently reading
2600 people want to read
About the author
Ian Brown
207 books43 followersA Canadian journalist and author.
He is currently the host of Human Edge and The View from Here on TVOntario, and has hosted programming for CBC Radio One, including Later the Same Day, Talking Books, and Sunday Morning.
He has also worked as a business writer at Maclean's and the Financial Post, a feature reporter for The Globe and Mail, and a freelance journalist for other magazines including Saturday Night.
Brown is also the editor of What I Meant to Say: The Private Lives of Men a 2006 collection of twenty-nine essays by prominent Canadian writers, including Greg Hollingshead, David MacFarlane, Don Gillmor, Bert Archer, and Brown himself, who asked his contributors to write on subjects that they'd like to discuss with women but had never been able to.
Brown has also published three books, Freewheeling (1989) about the Billes family, owners of Canadian Tire, and Man Overboard. He is an occasional contributor to the American public radio program This American Life. The Boy in the Moon, a book-length version of Brown's series of Globe and Mail features dealing with his son Walker's rare genetic disorder, Cardiofaciocutaneous Syndrome (CFC), was published in the fall of 2009.
In January 2010, Ian Brown won British Columbia's National Award for Canadian Non-Fiction for his book The Boy in the Moon: A Father's Search for His Disabled Son. The award is Canada's richest non-fiction prize and offers the winner a $40,000 prize. In February, 2010, the book won the Charles Taylor Prize, a $25,000 prize which recognizes excellence in literary non-fiction.
Brown is married to Globe and Mail film critic Johanna Schneller.
He is currently the host of Human Edge and The View from Here on TVOntario, and has hosted programming for CBC Radio One, including Later the Same Day, Talking Books, and Sunday Morning.
He has also worked as a business writer at Maclean's and the Financial Post, a feature reporter for The Globe and Mail, and a freelance journalist for other magazines including Saturday Night.
Brown is also the editor of What I Meant to Say: The Private Lives of Men a 2006 collection of twenty-nine essays by prominent Canadian writers, including Greg Hollingshead, David MacFarlane, Don Gillmor, Bert Archer, and Brown himself, who asked his contributors to write on subjects that they'd like to discuss with women but had never been able to.
Brown has also published three books, Freewheeling (1989) about the Billes family, owners of Canadian Tire, and Man Overboard. He is an occasional contributor to the American public radio program This American Life. The Boy in the Moon, a book-length version of Brown's series of Globe and Mail features dealing with his son Walker's rare genetic disorder, Cardiofaciocutaneous Syndrome (CFC), was published in the fall of 2009.
In January 2010, Ian Brown won British Columbia's National Award for Canadian Non-Fiction for his book The Boy in the Moon: A Father's Search for His Disabled Son. The award is Canada's richest non-fiction prize and offers the winner a $40,000 prize. In February, 2010, the book won the Charles Taylor Prize, a $25,000 prize which recognizes excellence in literary non-fiction.
Brown is married to Globe and Mail film critic Johanna Schneller.
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November 21, 2017
3.5
هالكتاب او هالرواية او المذكرة اخذ مني وقت اكثر من اللازم عشان اخلصه كان ممل اغلب الاوقات وحزين جدآ اي شخص حابب يعرف اكثر عن حياة الاشخاص المعاقين ومعاناة الاهل معهم هالكتاب مناسب جدآ .
هالكتاب او هالرواية او المذكرة اخذ مني وقت اكثر من اللازم عشان اخلصه كان ممل اغلب الاوقات وحزين جدآ اي شخص حابب يعرف اكثر عن حياة الاشخاص المعاقين ومعاناة الاهل معهم هالكتاب مناسب جدآ .
March 18, 2011
Many years ago, Dear Abby published an essay in her column called "Welcome To Holland," about how having a handicapped child is like planning a trip to Rome but ending up in Holland. It's not what you were expecting, and at first you're really disappointed, but then you find out Holland is nice. You like it there, it's better than Rome.
In Ian Brown's case, when his son Walker was born with a rare genetic condition called cardiofaciocutaneous (CFC) syndrome, it was "Welcome To Hell." Walker will always operate on the intellecutal level of a one to three year old, requiring intensive 24 hour care for the rest of his life. He can't talk, or feed himself (he takes food through a gastric tube), or use a toilet. He will hit and bite himself for hours. He requires an array of drugs administered through IV tubes.
Brown's description of a typical night of getting Walker to sleep is exhausting. The fact that Brown and his wife Johanna managed to take care of him at home for 11 years is nothing short of amazing.
What's also amazing is that, difficult as Walker was, the Browns found good people to help them. Olga the nanny, friends and family who invited Ian, Johanna, their daughter Hayley and Walker on vacations, who accepted and loved Walker for what and who he was.
Finding the serenity and acceptance promised in the "Welcome To Holland" essay is as difficult for Brown as raising Walker is. He is honest about his feelings, and he is the first to admit that neither he nor Walker fits the popular image of the saintly parent caring for the precious angel child. It's a monumental struggle for Brown to find meaning and joy in Walker's life, but he does. He manages to learn some very profound lessons from caring for his son and he shares them.
You read the book to find out how the Browns managed to cope with the enormous burden of Walker's condition, and you end up finding out why they do it.
In Ian Brown's case, when his son Walker was born with a rare genetic condition called cardiofaciocutaneous (CFC) syndrome, it was "Welcome To Hell." Walker will always operate on the intellecutal level of a one to three year old, requiring intensive 24 hour care for the rest of his life. He can't talk, or feed himself (he takes food through a gastric tube), or use a toilet. He will hit and bite himself for hours. He requires an array of drugs administered through IV tubes.
Brown's description of a typical night of getting Walker to sleep is exhausting. The fact that Brown and his wife Johanna managed to take care of him at home for 11 years is nothing short of amazing.
What's also amazing is that, difficult as Walker was, the Browns found good people to help them. Olga the nanny, friends and family who invited Ian, Johanna, their daughter Hayley and Walker on vacations, who accepted and loved Walker for what and who he was.
Finding the serenity and acceptance promised in the "Welcome To Holland" essay is as difficult for Brown as raising Walker is. He is honest about his feelings, and he is the first to admit that neither he nor Walker fits the popular image of the saintly parent caring for the precious angel child. It's a monumental struggle for Brown to find meaning and joy in Walker's life, but he does. He manages to learn some very profound lessons from caring for his son and he shares them.
You read the book to find out how the Browns managed to cope with the enormous burden of Walker's condition, and you end up finding out why they do it.
June 27, 2015
كتاب طفل في وجه القمر للصحفي الكندي إين براون.. يحكي قصة ابنه ووكر المصاب بمتلازمة نادرة جداً ( متلازمة القلب والوجه والجلد … cardiofaciocutaneous syndrome )..
ووكر واحد من 300 شخص على مستوى العالم مصاب بهذه المتلازمة النادرة.. تنتج هذه المتلازمة عن طفرة جينية تظهر في الشكل الغريب للوجه، التباعد الكبير بين العينين، عدم ظهور الحواجب لبعض المصابين، عدم القدرة على الكلام و قيام المصاب بإذاء نفسه المستمر عن طريق الضرب الشديد، كما يعاني من تأخر عقلي شديد.. أي أنه يحتاج إلى رعاية مكثفة على مدار الساعة طوال حياته..
إين براون والد ووكر سافر حول العالم والتقى بعلماء كبار في علم الجينات والأعصاب وقابل العديد من الأباء لأطفال مصابين بهذه المتلازمة ليجد حلاً لمشكلة ابنه .. لكن لم يستطع الأطباء ولا الآباء الإجابة عن أسألته..
في هذا الكتاب يعرض إين رؤيته عن افتراضات المجتمع عن ذوي الإحتياجات الخاصة.. وعن مجتمع العائلات الحاضنه لأطفال من ذوي الاحتياجات الخاصة..
ذهب إين تدريجيا في لوم ذاته على إنجاب طفل مصاب بهذه المتلازمة وأمله في علاجه.. لكنه توصل في النهاية إلى أن يحب ووكر كما هو ..
…
كتاب رائع جدا.. مليئ بالمشاعر الإنسانية الصادقة.. يأخذك بتسلسل إنسيابي إلى أعماق حياة أسرة لديها طفل ليس كباقي الأطفال.. يعرض الكفاح والتنازلات الكبيرة جدا لأفراد العائلة التي تقدمها في سبيل رعاية ووكر رعاية كاملة.. يأخذك في أعماق نفس الأب الحنون إين.. المحطمة أحيانا والمتفائلة غالبا.. وكيف يحاول أن يجد بصيص أمل ليغير مجرى حياة ابنه العزيز..
هذه المرة الأولى التي أعيش فيها تفاصيل حياة رعاية شخص من ذوي الإحتياجات الخاصة.. التركيز والانتباه المستمر لتصرفات وحركات ووكر .. الترقب الدائم لأي نوبة صراخ أو إيذاء نفسي تنتابه.. المحاولة الشاقة لجعله ينام ليلا.. مواعيد المستشفى التي لا تنتهي.. العدد الهائل من الأدوية.. البكاء والصراخ المستمر لساعات طويلة.. الإرهاق الجسدي والنفسي الذي لا ينتهي.. المبالغ المالية الكبيرة التي تنفق على مستلزماته وأدواته وطعامه وأدويته..
…
هذا الكتاب باختصار يعرض لك قيمة الإنسان في الحياة أيا كان شكل هذا الإنسان
ووكر واحد من 300 شخص على مستوى العالم مصاب بهذه المتلازمة النادرة.. تنتج هذه المتلازمة عن طفرة جينية تظهر في الشكل الغريب للوجه، التباعد الكبير بين العينين، عدم ظهور الحواجب لبعض المصابين، عدم القدرة على الكلام و قيام المصاب بإذاء نفسه المستمر عن طريق الضرب الشديد، كما يعاني من تأخر عقلي شديد.. أي أنه يحتاج إلى رعاية مكثفة على مدار الساعة طوال حياته..
إين براون والد ووكر سافر حول العالم والتقى بعلماء كبار في علم الجينات والأعصاب وقابل العديد من الأباء لأطفال مصابين بهذه المتلازمة ليجد حلاً لمشكلة ابنه .. لكن لم يستطع الأطباء ولا الآباء الإجابة عن أسألته..
في هذا الكتاب يعرض إين رؤيته عن افتراضات المجتمع عن ذوي الإحتياجات الخاصة.. وعن مجتمع العائلات الحاضنه لأطفال من ذوي الاحتياجات الخاصة..
ذهب إين تدريجيا في لوم ذاته على إنجاب طفل مصاب بهذه المتلازمة وأمله في علاجه.. لكنه توصل في النهاية إلى أن يحب ووكر كما هو ..
…
كتاب رائع جدا.. مليئ بالمشاعر الإنسانية الصادقة.. يأخذك بتسلسل إنسيابي إلى أعماق حياة أسرة لديها طفل ليس كباقي الأطفال.. يعرض الكفاح والتنازلات الكبيرة جدا لأفراد العائلة التي تقدمها في سبيل رعاية ووكر رعاية كاملة.. يأخذك في أعماق نفس الأب الحنون إين.. المحطمة أحيانا والمتفائلة غالبا.. وكيف يحاول أن يجد بصيص أمل ليغير مجرى حياة ابنه العزيز..
هذه المرة الأولى التي أعيش فيها تفاصيل حياة رعاية شخص من ذوي الإحتياجات الخاصة.. التركيز والانتباه المستمر لتصرفات وحركات ووكر .. الترقب الدائم لأي نوبة صراخ أو إيذاء نفسي تنتابه.. المحاولة الشاقة لجعله ينام ليلا.. مواعيد المستشفى التي لا تنتهي.. العدد الهائل من الأدوية.. البكاء والصراخ المستمر لساعات طويلة.. الإرهاق الجسدي والنفسي الذي لا ينتهي.. المبالغ المالية الكبيرة التي تنفق على مستلزماته وأدواته وطعامه وأدويته..
…
هذا الكتاب باختصار يعرض لك قيمة الإنسان في الحياة أيا كان شكل هذا الإنسان
January 3, 2015
أني أعشق كل الأعمال التي تتمحور حول تلك العلاقة بين الآباء والأبناء ، كانت البداية مع كتاب إرشادات الحياة القصيرة ثم مع كتاب وصايا لمحمد الرطيان تلك الحوارات والنصائح التي لن تجد أصدق منها بين البشر .
هذا الكتاب هو محاولة صادقة وجادة من أب لفهم ولده الذي أبتلي بداء نادر سلبه القدره على الكلام والتواصل ، لم يفهم الأطباء حتى الآن أسبابه .
تأثرث كثيرا بالأب كتب معاناته بكل صدق احترمته لمحاولاته المستمر لفهم مشاعر وأفكار ولده لكني كرهت إلحاده
ستدفعك كل كلمة ومن الصفحة الأولى للتفكير عميقا بحالهم ... وبحالنا ، ماذا لو كان هذا الصبي الكندي (ووكر) عربياً، هل كان سيعيش ليبلغ السادسة عشر أم سيموت من إهمال طبي ، إين و جوانا والدا ( ووكر) هل كانا سيسعيان لفهم ولدهما ومعرفة سبب مرضه أم سيعتبران الأمر (حسد وعين ) هل ستكون تربيتهما له عقلانيه أم مجرد شفقه وهَم ، هل سنستطيع نحن كمجتمع أن نتعلم من هؤلاء المرضى كبشرأم نعتبرهم مرضى فقط
كتب إين براون :
(( لم يكن ووكر مدعاة كبيرة للتفاخر،من الناحية العقلية أو البدنية، ولكن مثل كثير من الأطفال المصابين بمتلازمة القلب والوجه والجلد، فقد غَيَّر حياة بشر آخَرين، غيَّرحياتي أكثر من أي أحد آخَر؛ فقد عمَّقها ووسعها، وجعلني أكثر تسامحًا وتحمُّلًا، وائتمانًا من الناحية الأخلاقية، ومنحني نظرة أشمل للحياة. وأيضًا ما لم أكن أراه لولاه؛ كقدرته على جعل أية لحظة تمرُّ بنا ذكرى لا تُنسَى، وقدرتي على تقدير أهميتها بَدَا
هذا كأنه شكل من أشكال التطور أيضًا، تطور أخلاقي إيجابي، بالرغم من أنه ليس من النوعية التي يمكن أن يقيسها علم الجينوم الحديث. قد يكون الهدف من وجود المعاقين عقليٍّا مثل ووكر أن يحرِّرونا من العقم الصارخ لنظريةالبقاء للأصلح )) .
(( إنه لتكبُّر منَّا كبير أن نرى أن القدرة على الوعي بما حولنا هي أهم شيء؛ فليست هي كل ما يهم، فشجرة السكويا ليست قادرةعلى الإحساس بما حولها، ولكن لها أهميتها، وليس هناك أروع من هذا، ولا يتطلَّب الأمرمني التفكير فيها حتى أقف مشدوهًا أمامها. أنا لا أريد أن أقلِّل من صعوبة تربية الطفل المعاق، لكن هذا يشير إلى الوضع الذي وصلنا إليه كمجتمع، حيث يخلق تصرفنا على هذا النحو إعاقة خطيرة في هذه المواقف. ولكن من الخطأ تمامًا التفكير فيهم على أنهم أقل منَّا، فليس هناك أحد أقل أهمية من الآخر. هم فقط مختلفون عنا، فليس الأمر يتعلَّق بالعقول الكبيرة فقط، ولكن بالأرواح العظيمة أيضًا ))
هذا الكتاب هو محاولة صادقة وجادة من أب لفهم ولده الذي أبتلي بداء نادر سلبه القدره على الكلام والتواصل ، لم يفهم الأطباء حتى الآن أسبابه .
تأثرث كثيرا بالأب كتب معاناته بكل صدق احترمته لمحاولاته المستمر لفهم مشاعر وأفكار ولده لكني كرهت إلحاده
ستدفعك كل كلمة ومن الصفحة الأولى للتفكير عميقا بحالهم ... وبحالنا ، ماذا لو كان هذا الصبي الكندي (ووكر) عربياً، هل كان سيعيش ليبلغ السادسة عشر أم سيموت من إهمال طبي ، إين و جوانا والدا ( ووكر) هل كانا سيسعيان لفهم ولدهما ومعرفة سبب مرضه أم سيعتبران الأمر (حسد وعين ) هل ستكون تربيتهما له عقلانيه أم مجرد شفقه وهَم ، هل سنستطيع نحن كمجتمع أن نتعلم من هؤلاء المرضى كبشرأم نعتبرهم مرضى فقط
كتب إين براون :
(( لم يكن ووكر مدعاة كبيرة للتفاخر،من الناحية العقلية أو البدنية، ولكن مثل كثير من الأطفال المصابين بمتلازمة القلب والوجه والجلد، فقد غَيَّر حياة بشر آخَرين، غيَّرحياتي أكثر من أي أحد آخَر؛ فقد عمَّقها ووسعها، وجعلني أكثر تسامحًا وتحمُّلًا، وائتمانًا من الناحية الأخلاقية، ومنحني نظرة أشمل للحياة. وأيضًا ما لم أكن أراه لولاه؛ كقدرته على جعل أية لحظة تمرُّ بنا ذكرى لا تُنسَى، وقدرتي على تقدير أهميتها بَدَا
هذا كأنه شكل من أشكال التطور أيضًا، تطور أخلاقي إيجابي، بالرغم من أنه ليس من النوعية التي يمكن أن يقيسها علم الجينوم الحديث. قد يكون الهدف من وجود المعاقين عقليٍّا مثل ووكر أن يحرِّرونا من العقم الصارخ لنظريةالبقاء للأصلح )) .
(( إنه لتكبُّر منَّا كبير أن نرى أن القدرة على الوعي بما حولنا هي أهم شيء؛ فليست هي كل ما يهم، فشجرة السكويا ليست قادرةعلى الإحساس بما حولها، ولكن لها أهميتها، وليس هناك أروع من هذا، ولا يتطلَّب الأمرمني التفكير فيها حتى أقف مشدوهًا أمامها. أنا لا أريد أن أقلِّل من صعوبة تربية الطفل المعاق، لكن هذا يشير إلى الوضع الذي وصلنا إليه كمجتمع، حيث يخلق تصرفنا على هذا النحو إعاقة خطيرة في هذه المواقف. ولكن من الخطأ تمامًا التفكير فيهم على أنهم أقل منَّا، فليس هناك أحد أقل أهمية من الآخر. هم فقط مختلفون عنا، فليس الأمر يتعلَّق بالعقول الكبيرة فقط، ولكن بالأرواح العظيمة أيضًا ))
April 12, 2010
I highly recommend this book. Ian Brown writes so well that I forgot about the writing. This is a book about his handicapped son Walker. Again, Brown's writing skill is such that he could bring the reader up close, right into his nightly routine with his son, and then throughout the rest of the book explore every angle of the question of his son's life - genetics, medical support, schooling, therapies, the extreme pressures of caring for a handicapped child, the guilt of realizing it has become too much, and the desperate search for a truly loving and supportive home for Walker.
Brown travels across the country to meet other children with CFC, the rare syndrome his son suffers from. He also travels to meet Jean Vanier, founder of L'arch - a community for handicapped, and listens to the man explain his vision of what handicapped people have to offer the world.
I found this book easy to read, even the technical aspects of genetics - which is saying a lot. I think this book is valuable to everyone. What is the value of a life filled with suffering? What do handicapped people give to the world? Why are we so uncomfortable with them? What are we afraid of? Strangely enough, though I find Brown's conclusions bleak and very different from my own, I can understand why he feels the way he does and I appreciate his honesty.
If I had the chance to talk to Ian Brown, I would thank him for sharing his son with me. The world needs Walker, because the world is broken and handicapped and unable to fix itself and doesn't acknowledge it. People like Walker scare us because they destroy our own illusions of wholeness. I loved this book. Read it.
Brown travels across the country to meet other children with CFC, the rare syndrome his son suffers from. He also travels to meet Jean Vanier, founder of L'arch - a community for handicapped, and listens to the man explain his vision of what handicapped people have to offer the world.
I found this book easy to read, even the technical aspects of genetics - which is saying a lot. I think this book is valuable to everyone. What is the value of a life filled with suffering? What do handicapped people give to the world? Why are we so uncomfortable with them? What are we afraid of? Strangely enough, though I find Brown's conclusions bleak and very different from my own, I can understand why he feels the way he does and I appreciate his honesty.
If I had the chance to talk to Ian Brown, I would thank him for sharing his son with me. The world needs Walker, because the world is broken and handicapped and unable to fix itself and doesn't acknowledge it. People like Walker scare us because they destroy our own illusions of wholeness. I loved this book. Read it.
August 8, 2017
A book like this is difficult to review; I didn't like the book, but who am I to criticise what is an incredibly intimate and candid true story? I feel like by rating this book poorly I'm saying, your story is bad, where I'm not. I just didn't enjoy the book. The Boy in the Moon is a story of a journalist and his severely disabled son, and the struggles he faced trying to find a place in his home, family, and the world at large, for a boy who was incapable of intellectual growth beyond a two year old.
Brown's prose was flowery, saccharine, sentimental,and almost unbearable to read at times. It wasn't a particularly long book yet it draaaaaaaaagged so long it felt like twice the page count it actually had.
There were moments I enjoyed, particularly when Brown very frankly admitted he considered a murder/suicide scenario for himself and his son, to give his wife and "normal" daughter a chance at a normal life. It was something I had wondered about through the book, so I appreciated that he actually covered the idea.
If this book weren't so unbearably sentimental, it may have been a more enjoyable read, but in all, it was an unpleasant read and I did not like it at all.
Brown's prose was flowery, saccharine, sentimental,and almost unbearable to read at times. It wasn't a particularly long book yet it draaaaaaaaagged so long it felt like twice the page count it actually had.
There were moments I enjoyed, particularly when Brown very frankly admitted he considered a murder/suicide scenario for himself and his son, to give his wife and "normal" daughter a chance at a normal life. It was something I had wondered about through the book, so I appreciated that he actually covered the idea.
If this book weren't so unbearably sentimental, it may have been a more enjoyable read, but in all, it was an unpleasant read and I did not like it at all.
July 14, 2015
تفاصيل حكاية يرويها والد عن ابنه المصاب بمتلازمة نادرة جدا .. ويكأنه في خطابه يصرخ في وجه الآباء الذين يشتكون أطفالهم الأصحاء أن كفوا عن شكواكم والتفتوا لكنزكم ..كما ويشارك مأساة وقلق وأسئلة الأسر التي تحتضن طفلا مصابا
متلازمة نادرة دفعت الأب للانتقال من طبيب لآخر لسنوات عدة يسألهم تشخيصا غير أنهم حاروا وزادوا قلب الأب حرقة
حينما تخوض تجربة فريدة تجهل كنهها وكل ما سيواجهك .. حينما يكون السؤال رفيقك والقلق دائرتك التي تحيط بك .. حينما تُستبدل أمنية قديمة في انجاب طفل موفور الصحة إلى أمنية تشعل قلب الأب رغبة في أن تتحقق ( لو يتكلم ) !!
يخوض الأب صراع نفسي كبير بين حبه لابنه وواجبه تجاهه وبين ارساله لمركز الرعاية بذوي الاحتياجات الخاصة .. يدرك الأب ضعفه بعد مرور السنوات السبع .. فاحتياجات الطفل تزداد وقدرته على الاعتناء في تناقص .. وعقب ارساله المركز ينشأ سؤال لا يغادره .. هل تخليتُ عن ابني ؟ وفي بحثه عن الإجابة يبكي
متلازمة نادرة دفعت الأب للانتقال من طبيب لآخر لسنوات عدة يسألهم تشخيصا غير أنهم حاروا وزادوا قلب الأب حرقة
حينما تخوض تجربة فريدة تجهل كنهها وكل ما سيواجهك .. حينما يكون السؤال رفيقك والقلق دائرتك التي تحيط بك .. حينما تُستبدل أمنية قديمة في انجاب طفل موفور الصحة إلى أمنية تشعل قلب الأب رغبة في أن تتحقق ( لو يتكلم ) !!
يخوض الأب صراع نفسي كبير بين حبه لابنه وواجبه تجاهه وبين ارساله لمركز الرعاية بذوي الاحتياجات الخاصة .. يدرك الأب ضعفه بعد مرور السنوات السبع .. فاحتياجات الطفل تزداد وقدرته على الاعتناء في تناقص .. وعقب ارساله المركز ينشأ سؤال لا يغادره .. هل تخليتُ عن ابني ؟ وفي بحثه عن الإجابة يبكي
November 21, 2011
I picked up this book from the library display. This is a beautifully written memoir by a father of a son with a genetic disease (CFC). It covers the experiences, the challenges, the joy, the science, the disability policies, the spiritual aspects, the moral implications (and lack thereof of all of the above). Unless you experience it yourself, you can't begin to imagine the hardship, and how much things are slowly changing, in the disabled community. Of course most of us would not want to experience this firsthand. This book opened my eyes and my heart, and has educated me.
Towards the end of the book, a thought struck me, and I am writing this mostly for myself, so I can remember this:
The author struggles with Jean Vanier's comment that "you can see God in the face of" a mentally disabled person. He does not see God in his child's face. "He is not a saint, and nor am I" But he misunderstands.... I'm sure Vanier is not implying that the mentally disabled is saintlier or godlier or less sinful than any of us. But Jesus said that "If you do this (kindness: feeding, clothing, loving) to the least of you, you have done it to me." Jesus is the the God who has left the beauty and comforts of heaven, and stooped down to become the suffering servant, who died a humiliating death. But the story does not end there: He is resurrected in victory! This is the hope, and one day our bodies and soul will be perfected because of the God of Love.
May the author take comfort in this promise.
Towards the end of the book, a thought struck me, and I am writing this mostly for myself, so I can remember this:
The author struggles with Jean Vanier's comment that "you can see God in the face of" a mentally disabled person. He does not see God in his child's face. "He is not a saint, and nor am I" But he misunderstands.... I'm sure Vanier is not implying that the mentally disabled is saintlier or godlier or less sinful than any of us. But Jesus said that "If you do this (kindness: feeding, clothing, loving) to the least of you, you have done it to me." Jesus is the the God who has left the beauty and comforts of heaven, and stooped down to become the suffering servant, who died a humiliating death. But the story does not end there: He is resurrected in victory! This is the hope, and one day our bodies and soul will be perfected because of the God of Love.
May the author take comfort in this promise.
June 27, 2017
The author set himself an almost impossible task. How do you write about a boy who is profoundly intellectually disabled? How do you describe his personality, his relationships, his capacity for being human? How do you come to terms with his very existence? How do you know if you love him, or if he loves you?
These are mostly unanswerable questions which makes this book all that much more remarkable.
Although I couldn't come close to imagining what it would be like to have such a child, I did obtain a glimpse of how overwhelming it would be.
The extreme amount of stress the author and his wife endured would break apart most marriages. But he doesn't sugarcoat how bad it got. Nor does he provide facile answers. His struggle to find meaning in his son's existence is all the more impressive because he doesn't have a religious faith to fall back on.
I'm glad this wasn't one of those spiritual books that say that "God has his reasons" or will not give you more than you can bear. I'm not knocking that kind of faith but I'm more interested in how people without religious beliefs get by, because I think their accounts are more honest. Even the devout have "dark nights of the soul."
These are mostly unanswerable questions which makes this book all that much more remarkable.
Although I couldn't come close to imagining what it would be like to have such a child, I did obtain a glimpse of how overwhelming it would be.
The extreme amount of stress the author and his wife endured would break apart most marriages. But he doesn't sugarcoat how bad it got. Nor does he provide facile answers. His struggle to find meaning in his son's existence is all the more impressive because he doesn't have a religious faith to fall back on.
I'm glad this wasn't one of those spiritual books that say that "God has his reasons" or will not give you more than you can bear. I'm not knocking that kind of faith but I'm more interested in how people without religious beliefs get by, because I think their accounts are more honest. Even the devout have "dark nights of the soul."
February 24, 2016
العلاقة التي بناها إين مع ابنه ووكر .. المصاب بـ متلازمة القلب والوجه والجلد (وهي متلازمة نادرة).. كانت علاقة مختلفة
لم تكن مجرد طفل معاق .. يعني من الكثير من مشاكل النمو والمشاكل الصحية.
ووكر كان درسٌ كبير في الأبوة وحسن التصرف
من ينتقل بين حروف إين في رحلتهالاستكشافية المختصرة
سـ يفهم معنى التضحية التي تقدمها لـ أطفالك
.
ما أزعجني بين السطور هو بعض التفاصيل التي لم يكن لـ ذكرها أي أهمية
لم تكن مجرد طفل معاق .. يعني من الكثير من مشاكل النمو والمشاكل الصحية.
ووكر كان درسٌ كبير في الأبوة وحسن التصرف
من ينتقل بين حروف إين في رحلتهالاستكشافية المختصرة
سـ يفهم معنى التضحية التي تقدمها لـ أطفالك
.
ما أزعجني بين السطور هو بعض التفاصيل التي لم يكن لـ ذكرها أي أهمية
April 4, 2016
كل حرف في هذا الكتاب يدفعك إلى شكر الله على النعمة التي أنعمنا بها ألا وهي نعمة الصحة. هذه النعمة التي غالبا ما ننساها في رحلتنا للحصول علو المادة .... صدق رسول الله صلى الله عليه وسلم عندما قال « من أصبح منكم آمنا في سربه، معافى في جسده، عنده قوت يومه، فكأنما حيزت له الدنيا»
November 13, 2016
كتاب جيد ورائع وفكرة جديدة خصوصاً في الفصول الأولي ولكن الوصف والتكرار الزائد فيه أفقده جزء كبير من مفهومه التطويل في بعض الأجزاء والشرح جعله ممل
October 24, 2020
This is long, and an on-going conversation with myself. I had to put this into words to help me move forward in my contemplation. YOUR take (once you have read the book) is welcome!
I'm reading a library book that I keep renewing: the first 2/3 of the book is devastatingly painful to read (as a parent, as a human being) but it is the set up for the last third which I am finding so intensely fascinating, thought provoking, spiritually and philosophically engaging and (again) provoking, that I may just have to buy it.
The question it addresses, for me, is "What does it mean to be fully human? To be socially alive and connected? Especially if you or your child/sibling/etc are severely disabled?"
I have read this section twice and need to read it again, If I have intrigued you, read [reed] it, but keep in mind what I said above...
The Boy in the Moon: a father's journey to understand his extraordinary son. By Ian Brown, St Martin's Press 2011
A college friend wrote:
Are you asking us a question, or recommending we read it? If you're asking a question about what does it mean to be fully human and being severely disabled,... this is a great question, .... humanity is in the connection to other humans. Ability or disability does not take away your humanity, your essence. {Greatly reduced comment]
My response: Actually I'm not asking, I am still thinking through the premises put forward in the last third of the book. This book is talking about really severe disabilities: no verbal communication, minimal motor ability. I'd rather not go further because I really want to re-re-read the part that grabbed my brain and heart.
It's much less a matter of "how much" disability, as (I'm butchering my own thoughts) the idea that that there is a very basic level of communication (perhaps just through the eyes, though touch, through facial expression) that allows ME (say) to grasp the humanity and individuality of the profoundly disabled person I am spending time with.
What I am trying to "grok" (what book was THAT from?) is being lived and written about daily in communities throughout France and some in Canada. The ones in France are called L'Arche (The Ark).
Now, back to that book.....
I'm reading a library book that I keep renewing: the first 2/3 of the book is devastatingly painful to read (as a parent, as a human being) but it is the set up for the last third which I am finding so intensely fascinating, thought provoking, spiritually and philosophically engaging and (again) provoking, that I may just have to buy it.
The question it addresses, for me, is "What does it mean to be fully human? To be socially alive and connected? Especially if you or your child/sibling/etc are severely disabled?"
I have read this section twice and need to read it again, If I have intrigued you, read [reed] it, but keep in mind what I said above...
The Boy in the Moon: a father's journey to understand his extraordinary son. By Ian Brown, St Martin's Press 2011
A college friend wrote:
Are you asking us a question, or recommending we read it? If you're asking a question about what does it mean to be fully human and being severely disabled,... this is a great question, .... humanity is in the connection to other humans. Ability or disability does not take away your humanity, your essence. {Greatly reduced comment]
My response: Actually I'm not asking, I am still thinking through the premises put forward in the last third of the book. This book is talking about really severe disabilities: no verbal communication, minimal motor ability. I'd rather not go further because I really want to re-re-read the part that grabbed my brain and heart.
It's much less a matter of "how much" disability, as (I'm butchering my own thoughts) the idea that that there is a very basic level of communication (perhaps just through the eyes, though touch, through facial expression) that allows ME (say) to grasp the humanity and individuality of the profoundly disabled person I am spending time with.
What I am trying to "grok" (what book was THAT from?) is being lived and written about daily in communities throughout France and some in Canada. The ones in France are called L'Arche (The Ark).
Now, back to that book.....
September 8, 2011
A beautiful, heart-wrenching book -- really something special. Ian Brown is a Canadian journalist whose son, Walker, was born with an incredibly rare genetic mutation that left him severely physically and cognitively disabled; in this memoir Brown describes life with Walker (difficult, stressful, exhausting, joyful), researches the science behind the disorder (don't worry, nothing too technical, and easily digestible), and discusses society's attitudes toward the profoundly disabled -- including some revelatory descriptions of remarkable people and organizations that have crafted uniquely humane approaches to working with them. Brown also asks a lot of tough questions, many of which he can't answer -- why did this happen, what is the meaning of Walker's life, how do the disabled fit into/enhance/burden society, how to handle the guilt and pain of parenting his son. Mostly, though, this is the story of the deep, life-changing love that this father has for his son, even as Brown is bracingly honest about his own shortcomings and sometimes less-than-charitable thoughts and feelings. Wry, frank, and superbly written, this is a deeply affecting read.
January 29, 2016
كتاب مؤثر جداً مؤلم اصابني بالاكتئاب والتعاسة والفرح والبهجة اضاف لي الكثير وانار عقلي وغير بصيرتي لكثير من الاشياء التي لم اكن اضعها في الحسبان شعرت بحزن اكبر لانني اعرف صديقا له ابن يعاني هذه المتلازمة وللاسف لم يدعم كما دعم الكاتب من كل الاطراف بالعكس فقد نبذه حتى اهلة "اهل الوالد للطفل المعاق ولصدمتي ان يبتلي الاب بمرض السرطان سبحان الله لا اعلم هذه الاسرار لكن هذا الواقع الذي نعيشه كبشر ضعفاء جعلني اكره كل شيء في الوقت الحالي
August 3, 2017
فكرة الكتاب جميلة جدا ومفيدة اذ انها تتناول حياة المحيطين بصبي يعاني من متلازمة القلب والوجه والجلد وهي متلازمة نادرة جدا وغريبة في نفس الوقت... بداية الكتاب مشوقة ولكن مع الوقت نجد ان الكاتب وقع في فخ السلبية والسرد المطرد والتكرار الممل لمشاعره... وهي مشاعر انقسمت ما بين الخوف من عدم القدرة على الصمود امام متطلبات مرض ابنه على المدى البعيد وبين الشعور بتانيب الضمير والذنب بعد ايداع ابنه في داررعاية....
March 5, 2016
كتاب جميل بيحكي عن معاناه طويلة عشت معاه شهور لحد ما خلصته
من كتر الألم اللي فيه
وشوفت عالم تاني مكنتش متخيل أنه بالألم ده ولا المعانه ديه كلها
من كتر الألم اللي فيه
وشوفت عالم تاني مكنتش متخيل أنه بالألم ده ولا المعانه ديه كلها
April 20, 2017
"أحب البلهاء , أحب صراحتهم. لكن للأمانة ,دائماً ما يكون المرءٌ أبله من وجهة نظر شخصٍ ما"
رينيه جوسيني
رينيه جوسيني
September 9, 2021
This is one of My Mom's book. And once I read this, it very relates with me and family life. My little brother has a severe autism syndromes and his intellectual is below normal. As a sister who has a special brother like me, it really opened up my eyes for always taking care and understanding my brother and also can accept his condition in sincere. The idea (maybe his fantasy) of Ian Brown, for us normal people who can mingle with special condition people (not in opposite normal life, which special people needs to mingle with normal people) is very interesting, I once has an idea for make an housing for autistic adult in a way that they can has a community so they can be more living in this world. And also In Indonesia (where I lived and also my nationality), special needs people has very least attention. Government can't take care of their needs, it's very different with other country (I read on America, special needs it's becoming Gov responsibility, Gov give them therapy, housing, medical needs, and also some money). It's very different in Indonesia (or maybe I have no clue for this). It's very sad that I can't guarantee my brother life in the future. I hope Indonesia can be more caring with people with special needs. This book is very inspiring, thank you Ian Brown for your beautiful journey!
September 23, 2020
An honest, moving, well-written memoir about raising a child with a rare and tragic syndrome (I hate using words like tragic, but when a symptom of a disorder is unstoppable self-harm it is difficult to avoid.) Having and loving a disabled child comes with many gifts, and many many sacrifices. Brown does a wonderful job of conveying all of that. For me it was perhaps too detailed with regard to accessing services and needed items such as bearing the outrageous costs of simple things like a lifetime of diapers and formula (Brown's son could not swallow or talk or be toilet trained) to hold my interest. All that said, when I finished I immediately gave it to a friend with an adult child severe autism and intellectual disabilities who had had many of the same struggles getting services and laying out a plan for her daughter for after she and her daughter's father are gone. I know it will be a meaningful read for her.
March 28, 2020
A view on disability and the place the disabled hold in our world. From a father's perspective, who sets out on a journey to try and understand why Walker, why CFC, and why does the world have that attitude? It really brought home the miracle of the genetics coming together to form a perfect human - except that it is doesn’t always happen that way. Brown's writing captures his frustration, his love, his need to know, and his hope.
April 22, 2024
4.5 stars
June 18, 2018
Wow! An important story well told.
I couldn't imagine raising a handicapped child, but now I feel like I know the incredible journey inside and out. I still doubt that I would rise to the enormous task.
Ian Brown tells this personal tale with such insight and wisdom. He also reveals his own struggles, including loving his broken boy as he is without mourning what he is lacking. He writes about the immense lake of pain and guilty in which many parents of disabled children try to stay afloat.
Brown's son Walker was born with a rare genetic mutation, so rare that it was ten years before Brown met another child with the debilitating condition.
A tough, but heartfelt read.
I couldn't imagine raising a handicapped child, but now I feel like I know the incredible journey inside and out. I still doubt that I would rise to the enormous task.
Ian Brown tells this personal tale with such insight and wisdom. He also reveals his own struggles, including loving his broken boy as he is without mourning what he is lacking. He writes about the immense lake of pain and guilty in which many parents of disabled children try to stay afloat.
Brown's son Walker was born with a rare genetic mutation, so rare that it was ten years before Brown met another child with the debilitating condition.
A tough, but heartfelt read.
July 28, 2020
Book quotes that stuck with me:
For the first eight years of Walker’s life, every night is the same. The same routine of tiny details, connected in precise order, each mundane, each crucial. The routine makes the eight years seem long, almost endless, until I try to think about them afterwards, and then eight years evaporate to nothing, because nothing has changed.
For all this nightly nightmare—the years of desperate worry and illness and chronic sleep deprivation, the havoc he has caused in our lives, threatening our marriage and our finances and our sanity—I long for the moment when he lets his crazy formless body fall asleep against me. For a short while, I feel like a regular little boy’s father. Sometimes I think this is his gift to me—parcelled out, to show me how rare and valuable it is. Walker, my teacher, my sweet, sweet, lost and broken boy.
I like to think he laughs because he’s with me, but that’s absurd. He’ll laugh with almost anyone.
The strange thing was that all this darkness could be relieved by a few pinpoints of light. A reaction alone was notable; a smile or one of his glee sprees charmed my afternoon.
Most of the time I snuck back into the house quietly, turning the heavy front door lock by hand, leaving my shoes by the door, hoping to get to bed without waking him, without hearing him crying or pounding his head. He had a knack for worming his way into my brain just as I opened a book or began to write a letter, and once I heard him, I was hijacked. I couldn’t bear the sound of his steady agony.
Those were the good days. On the bad ones he stayed with me, hanging on to my arm or lying near me, moaning or wailing or crying. When it snowed too much for him to go outside in his stroller he pitched fits, lying on the floor and slamming his head against it. I know the precise shape of that noise from memory.
He loved being spoken to. He loved a lot of things, or seemed to. I nattered on in his ear, endlessly, but I didn’t mind that he never answered. He made me stretch for him; for inexplicable reasons I am grateful to him for that, always will be. Where would I have gone, without him? He was such a little boy, featherweight, dependent: whoever was with him was his world, and I loved being his world, if he let me.
I often drank gin heartily when it wasn’t my night with him, for the instant lift-off. (I had no time to lose.) Every free minute felt like a sapphire, and yet also stung me with a rebuke: not because I was being irresponsible, but because his need never went away. We frantically tried to relax as much as we could in the time we had.
It’s a charming scene; who knows, maybe what it depicts is genuine curiosity, a moment of clarity in that fogged-in head. Or so I think—until the charm falls away, and the space around my eyes begins to ache, and I can’t look at the picture any longer. Every instant of joy with him is like this, lined at some eventual depth with the lead of sadness, a reminder of—well, never mind that. No need to go too big too fast. But I have to put the pictures of him aside now; that’s as long as I can stand it. It took me ages to let these fantasies go; I daren’t let them back.
I didn’t want anyone to reject him, so I tried to take rejection out of the picture from the start. He felt like my boy that way. I was not going to let anyone hurt him, he had been hurt enough, and so I would wrap his guilelessness in my constant presence to protect him against everything, even rejection. We were in it together, he and I, it didn’t matter about the others. You could hammer away at me, but you’d never get through to him. Like taking a beating: bury yourself, hunker down, survive until the blows stop raining. It was the least I could do as his father, and at least I did that.
Let me ask you this: is what we’ve been through so different from what any parent goes through? Even if your child is as normal as a bright day, was our life so far from your own experience? More intensive, perhaps; more extreme more often, yes. But was it really different in kind? We weren’t disability masochists. I met those people too, the parents of disabled children who seemed to relish their hardship and the opportunity to make everyone else feel guilty and privileged. I disliked them, hated their sense of angry entitlement, their relentless self-pity masquerading as bravery and compassion, their inability to move on, to ask for help. They wanted the world to conform to their circumstances, whereas—as much as I could have put words to it—I simply wanted the rest of the world to admit (a minor request!) that our lives, Walker’s and Hayley’s and my wife’s and mine, weren’t any different from anyone else’s, except in degree of concentration.
On my desk at work is a picture of Hayley reading to Walker. This was up north, on the quiet island. They are lying side by side on a bed, and Walker is looking up at the book in Hayley’s hands, as if riveted by every word. I don’t know if he understands a syllable. But he can hear her voice, is thrilled to be with her and clearly grasps his smart big sister’s affection. He has become the moment and it has become him, because he has nothing else to be. Walker is an experiment in human life lived in the rare atmosphere of the continuous present. Very few can survive there.
What was happening to our marriage? Many days it felt like a man with a lingering sickness he didn’t know he had, getting weaker and thinner, but turning up for work every day nonetheless. “We ask so much of each other, taking care of Walker,” Johanna said one morning, explaining our mutual bad mood to me, “that when it comes to looking after each other, there just isn’t anything left.” Estimates of the number of marriages that fail due to caring for a disabled child range from 60 to 80 percent. The ones that do make it through, according to other studies, are that much stronger for the challenge. I have no idea whether any of the research means anything.
Johanna seems resigned, or at least numbed to our long-coming decision. But I’m a wreck. I feel as if the shape that he gave my life, this deep fate he handed me, is melting away. For what? For the sake of my own comfort? Because there is no such thing as a perfect solution? When I think of this house without him, my body becomes a cave.
I’m sickened by the idea of Walker living anywhere else, but my guilt is by now a luxury. We must act. He can’t be alone for even a minute, twenty-four hours a day. Eventually he’ll have to move.
“Sometimes it’s not a choice between right and wrong,” she says. “Sometimes it’s a choice between bad and slightly less bad. That was a revelation to me—that some things are unfixable.”
In theory, having a handicapped child could bring a family closer together—a mutual project, a joint challenge, a bond. In practice, Walker deprives us of any privacy we ever had—and we are private people, introverts, readers and ponderers. Instead of bringing us together, Walker scatters us, making us both less private and intensely more so at once, desperate for a refuge where there are no interruptions, no surprises.
A disabled child teaches you to make your own rules.
He’s on a new dose of risperidone and a new drug for reflux, and his moods are more even. But it’s his emotional confidence that’s leaping forward. Living only in our world, I’m sure, he saw his limitations everywhere. In his new vacation home, as I think of it, surrounded by peers, he’s as solid as anyone. I hope that is the gift we gave him by giving him up.
The strange thing is that when the incessant watchfulness of having a CFC kid does let up, it’s hard to let go. Ernie Santa Cruz, Molly’s husband, noticed it the first time he and Molly took a weekend away from Emily, when the child was five years old. They left her with Molly’s sister, Kate, who lives fifteen minutes away in the Salinas Valley, not far from their parents, who descend from some of the first missionaries who settled California. Ernie had reserved a room in a great motel next to the Avila Hot Springs, and the setting was perfect. Their first weekend away in five years. And yet what’s the only thing Ernie can think about? Emily. Every few minutes, he has the same thought: what’s Emily doing now? Is she sweeping the books off the bookshelf in the living room? Or is she alone in her room?
There was a lot of religion in the mix: a day rarely passed without someone thanking the Lord for the hidden “blessings” of having a CFC “angel,” without someone else insisting that God “gives special children to special parents.” I understood that impulse: Walker had given my life shape, possibly even meaning. But Walker had also made our lives hell. On the hellish days the mawkish sermonizing about angels and specialness felt like rank self-delusion, the work of anxious cheerleaders desperate to justify themselves to a cynical high school. Disability is no different from politics or even college football: it divides and politicizes people according to their need, simplifying dark and unanswerable experience into a dependable, reassuring stance. But the details of Walker’s life belied any certain path. Johanna had been in touch with Brenda Conger’s CFC network early on, before the Internet existed. But she was impatient then for specific advice, for skin creams and therapies that would help right away. “It seemed to be a lot about Jesus and angels and thinking of the kids as gifts from God,” she told me years later. It was hard to think of Walker as a gift from God, unless God was a sadist who bore a little boy a grudge.
Then, one day when he was 2 years old I realized I was so obsessed with finding his problem and fighting this battle myself that I wasn’t enjoying him … because I was so heartbroken over my dream of “normal” [being] crushed. So, from that point on I accepted Logan as Logan, and I didn’t think about what he should or could be doing but what he WAS doing. Though there are hard days and challenges, there are many GOOD days and now this life for me is normal. I promise it will get easier.
By the time Jaime was eleven, she was too much for Lana and her husband to look after (especially alongside their three other children), and she went to live in one of the top group homes in the United States, in Idaho. “That was the most dramatic, the most difficult thing I have ever done,” Lana said. “There was this hole in my heart.
Melissa’s incredibly empathetic to people, and to dogs and animals,” Fergus said then, on the extension, and I reeled again, in a way that has become familiar to me: crushing to hear a man speak about his daughter that way, reaching for nice things to say and coming up with her empathy for pets in his hand, like a fish he had to his own astonishment pulled from a fast river. I understood, believe me I understood, but it depressed me anyway. Every conversation I had with other CFC parents was like that. What drove Fergus especially crazy was that because of Melissa, he wasn’t allowed to have the same impulses and desires the rest of the world had—because to have regular ambitions for your own life meant you were putting yourself first, or even momentarily ahead of your all-consuming child.
It was as if some people, the government included (in that it made money hard to obtain), believed that Fergus might actually have time or even the desire, in the midst of the hell of looking after a disabled child, to try to use that disability to scam the government and its taxpayers.
“He’s taught us how to accept life for what it is, to deal with it as it comes up. You can be either stuck in a bad rut, or you pick up the pieces and go on the best we can. Right then and there [after Luke was born], we just changed our ways. We bought a camper and went camping, because he likes that. One of the biggest things Luke has taught us is to accept being different, not to be afraid of him.
“Without him, I would have been more interested in material things,” Angie said. “Stuff. And now, it’s just like, you know, I can do without it. I don’t need it. Just having your health and people that you love and a family that’s strong …”
She saw the entire process from a scientific height, as evidence of the elegance of human biology. “There are just so many things that can go wrong in conception,” she said. “The majority of pregnancies are spontaneously aborted, or miscarried very, very early in the pregnancy—it’s just nature’s way of allowing only the right combination to come to term. Even to be born, you are already one of a minority of conceptions—so much has had to go right to get to that point.” This was a new way of understanding Walker—instead of broken, he was simply slightly flawed, like a discounted but perfectly wearable pair of shoes at an outlet mall. He was still “a genetic configuration,” as Estep put it, “that is compatible with life, is a living, breathing human being. So there’s a wide variance. They all have two arms, two legs. Most of the children have a range of emotions. They’re human.”
“Emotionally, I still think if I was any kind of a mother he would still be at home.” She paused, and then the snap happened, as I knew it would. “I don’t feel like his mummy any more. I’m not the person he turns to now.” She was crying, I could tell without looking. I could feel her start to go, as if the floor of the house were falling away. “He turns to others.” It was the best I could do. Yes, yes, she was nodding, there was that. “As long as someone loves him every day, I don’t care who it is.” Sobbing now, one of her fast, efficient sobs. He was an emptiness, a hole in our lives that would always be there. He was here with us and now he wasn’t. Did facing the wound every day make us better people? No. Did we have a choice? No. Did it make us remember the wound? Yes. Does that change anything? I don’t know.
Johanna had been a superb mother, had done everything there was to do and had done it well, but she was convinced it was not enough. Certainly the world had ignored her plight, but it never let her believe she was guiltless either. A lot of CFC mothers felt the same way. Amy Hess and Molly Santa Cruz did, for instance, and they had stayed home to boot, had become the most proactive super disability-moms I knew. But there was no escaping their guilt: it lived deep in them, deep in the germline of the maternal.
When she spoke again she said, “I don’t know what Walker’s value is to the world. I’m not sure that I agree that his lasting value is to have touched people. That his whole life has to be this fucking Gandhi thing, making people feel better about themselves. I don’t think his life should only have value because he makes other people feel more contented with their own lives. I think his life should have a value of its own.”
But the social disapproval is still intense,” I said. “People don’t like to be reminded of the disabled. Why is that?” “I think people are frightened at seeing people with disability,” Vanier replied. “It might say to them, one day, you might have an accident and you will be disabled. You know, we are frightened of death. And the disabled are a sign of death.”
What is it that makes you open your heart to someone else?” Vanier asked. I stared at him. I had no answer. “A weak person,” Vanier said. “Someone who is saying, ‘I need you.’” If the need of the person is too great to be satisfied, as is often the case with parents looking after a severely disabled child on their own, the result is guilt and disaster. “But parents in a village where there are young people who are going to come and sit by Walker and take him for a walk, and all that sort of thing, then life changes. But alone, it’s death.
We all know we’re going to die. Some of us will die at the age of ten. Some of us will die at eighty-five. We begin in fragility, we grow up, we are fragile and strong at the same time, and then we go into the process of weakening. So the whole question of the human process is how to integrate strength and weakness. You talk about your vulnerability with Walker. Something happened to you, which people who haven’t lived what you’ve lived will never be able fully to understand—you have been able to become human by accepting your own vulnerability. Because you were able to say, I didn’t know what to do. “We’re in a society where we have to know what to do all the time. But if we move instead from the place of our weakness, what happens? We say to people, I need your help. And then you create community. And that’s what happened here.”
“The guilt. The guilt. The parents of the disabled were as a group the most pained people, because many of them feel guilty. They ask that terrible question, why has it happened to me? You find in the Knights chapter of St. John, when Jesus and his disciples meet a man born blind. And their immediate question is, why? Whose fault is it? Did he commit a sin, or did the parents commit a sin? Why do you have a son like that and why does someone else not have a son like that? Wracking your brains about that sort of stuff—we can spend a lot of time asking the wrong questions. The right question is, how can I help my son, to be happier? The wrong question is, is it my fault?”
I was near the end of my tether. His screaming had been non-stop for an hour, and under the relentless steamy Florida sun had expanded in my head to the point where the human agony it represented, the displacement and existential isolation it represented, were the only things I could hear or think about or even see: the white band of his noise became a strain of aural glaucoma, closing down all my other senses. I thought, “You know, my boy, there are times when I hate you”—which is not the attitude of the son of the first-time flier, but it was at least momentarily true, and Walker forced me, even allowed me, to admit it. He is the antidote to false consciousness. He will always remind me of where we truly are. And somehow—maybe because of the fierce light of his dogged-ness, or because we had survived another meltdown, another encounter with chaos—a force field of resilience formed around us, and gradually, with hiccupping tears and gulping breaths and finally sighs, he stopped crying, and sat back, and rode with me, with no strength left to do anything except take in the details of the passing world.
That’s the problem with an official policy of inclusion: you can never be who you really are. I suspect I feel in Disneyworld the way Walker feels in the real world: it has its charms, but mostly we don’t quite fit.
I go out often enough that I can recreate every foot of the route in my head. I tend to speed on the drive to get him; when I’m taking him back I am not so eager. Even after three years, the departures (kiss him goodbye more than once and give him a squeeze and kiss him a final time and then step quickly outside and pull the automatically locking front door of the house shut behind me and walk down the wheelchair ramp to the car) are like small deaths, as if the sun is slowly dimming. As if something wicked and deeply unnatural is occurring.
Everything he likes is so important to me. They feel like accomplishments.
For the first eight years of Walker’s life, every night is the same. The same routine of tiny details, connected in precise order, each mundane, each crucial. The routine makes the eight years seem long, almost endless, until I try to think about them afterwards, and then eight years evaporate to nothing, because nothing has changed.
For all this nightly nightmare—the years of desperate worry and illness and chronic sleep deprivation, the havoc he has caused in our lives, threatening our marriage and our finances and our sanity—I long for the moment when he lets his crazy formless body fall asleep against me. For a short while, I feel like a regular little boy’s father. Sometimes I think this is his gift to me—parcelled out, to show me how rare and valuable it is. Walker, my teacher, my sweet, sweet, lost and broken boy.
I like to think he laughs because he’s with me, but that’s absurd. He’ll laugh with almost anyone.
The strange thing was that all this darkness could be relieved by a few pinpoints of light. A reaction alone was notable; a smile or one of his glee sprees charmed my afternoon.
Most of the time I snuck back into the house quietly, turning the heavy front door lock by hand, leaving my shoes by the door, hoping to get to bed without waking him, without hearing him crying or pounding his head. He had a knack for worming his way into my brain just as I opened a book or began to write a letter, and once I heard him, I was hijacked. I couldn’t bear the sound of his steady agony.
Those were the good days. On the bad ones he stayed with me, hanging on to my arm or lying near me, moaning or wailing or crying. When it snowed too much for him to go outside in his stroller he pitched fits, lying on the floor and slamming his head against it. I know the precise shape of that noise from memory.
He loved being spoken to. He loved a lot of things, or seemed to. I nattered on in his ear, endlessly, but I didn’t mind that he never answered. He made me stretch for him; for inexplicable reasons I am grateful to him for that, always will be. Where would I have gone, without him? He was such a little boy, featherweight, dependent: whoever was with him was his world, and I loved being his world, if he let me.
I often drank gin heartily when it wasn’t my night with him, for the instant lift-off. (I had no time to lose.) Every free minute felt like a sapphire, and yet also stung me with a rebuke: not because I was being irresponsible, but because his need never went away. We frantically tried to relax as much as we could in the time we had.
It’s a charming scene; who knows, maybe what it depicts is genuine curiosity, a moment of clarity in that fogged-in head. Or so I think—until the charm falls away, and the space around my eyes begins to ache, and I can’t look at the picture any longer. Every instant of joy with him is like this, lined at some eventual depth with the lead of sadness, a reminder of—well, never mind that. No need to go too big too fast. But I have to put the pictures of him aside now; that’s as long as I can stand it. It took me ages to let these fantasies go; I daren’t let them back.
I didn’t want anyone to reject him, so I tried to take rejection out of the picture from the start. He felt like my boy that way. I was not going to let anyone hurt him, he had been hurt enough, and so I would wrap his guilelessness in my constant presence to protect him against everything, even rejection. We were in it together, he and I, it didn’t matter about the others. You could hammer away at me, but you’d never get through to him. Like taking a beating: bury yourself, hunker down, survive until the blows stop raining. It was the least I could do as his father, and at least I did that.
Let me ask you this: is what we’ve been through so different from what any parent goes through? Even if your child is as normal as a bright day, was our life so far from your own experience? More intensive, perhaps; more extreme more often, yes. But was it really different in kind? We weren’t disability masochists. I met those people too, the parents of disabled children who seemed to relish their hardship and the opportunity to make everyone else feel guilty and privileged. I disliked them, hated their sense of angry entitlement, their relentless self-pity masquerading as bravery and compassion, their inability to move on, to ask for help. They wanted the world to conform to their circumstances, whereas—as much as I could have put words to it—I simply wanted the rest of the world to admit (a minor request!) that our lives, Walker’s and Hayley’s and my wife’s and mine, weren’t any different from anyone else’s, except in degree of concentration.
On my desk at work is a picture of Hayley reading to Walker. This was up north, on the quiet island. They are lying side by side on a bed, and Walker is looking up at the book in Hayley’s hands, as if riveted by every word. I don’t know if he understands a syllable. But he can hear her voice, is thrilled to be with her and clearly grasps his smart big sister’s affection. He has become the moment and it has become him, because he has nothing else to be. Walker is an experiment in human life lived in the rare atmosphere of the continuous present. Very few can survive there.
What was happening to our marriage? Many days it felt like a man with a lingering sickness he didn’t know he had, getting weaker and thinner, but turning up for work every day nonetheless. “We ask so much of each other, taking care of Walker,” Johanna said one morning, explaining our mutual bad mood to me, “that when it comes to looking after each other, there just isn’t anything left.” Estimates of the number of marriages that fail due to caring for a disabled child range from 60 to 80 percent. The ones that do make it through, according to other studies, are that much stronger for the challenge. I have no idea whether any of the research means anything.
Johanna seems resigned, or at least numbed to our long-coming decision. But I’m a wreck. I feel as if the shape that he gave my life, this deep fate he handed me, is melting away. For what? For the sake of my own comfort? Because there is no such thing as a perfect solution? When I think of this house without him, my body becomes a cave.
I’m sickened by the idea of Walker living anywhere else, but my guilt is by now a luxury. We must act. He can’t be alone for even a minute, twenty-four hours a day. Eventually he’ll have to move.
“Sometimes it’s not a choice between right and wrong,” she says. “Sometimes it’s a choice between bad and slightly less bad. That was a revelation to me—that some things are unfixable.”
In theory, having a handicapped child could bring a family closer together—a mutual project, a joint challenge, a bond. In practice, Walker deprives us of any privacy we ever had—and we are private people, introverts, readers and ponderers. Instead of bringing us together, Walker scatters us, making us both less private and intensely more so at once, desperate for a refuge where there are no interruptions, no surprises.
A disabled child teaches you to make your own rules.
He’s on a new dose of risperidone and a new drug for reflux, and his moods are more even. But it’s his emotional confidence that’s leaping forward. Living only in our world, I’m sure, he saw his limitations everywhere. In his new vacation home, as I think of it, surrounded by peers, he’s as solid as anyone. I hope that is the gift we gave him by giving him up.
The strange thing is that when the incessant watchfulness of having a CFC kid does let up, it’s hard to let go. Ernie Santa Cruz, Molly’s husband, noticed it the first time he and Molly took a weekend away from Emily, when the child was five years old. They left her with Molly’s sister, Kate, who lives fifteen minutes away in the Salinas Valley, not far from their parents, who descend from some of the first missionaries who settled California. Ernie had reserved a room in a great motel next to the Avila Hot Springs, and the setting was perfect. Their first weekend away in five years. And yet what’s the only thing Ernie can think about? Emily. Every few minutes, he has the same thought: what’s Emily doing now? Is she sweeping the books off the bookshelf in the living room? Or is she alone in her room?
There was a lot of religion in the mix: a day rarely passed without someone thanking the Lord for the hidden “blessings” of having a CFC “angel,” without someone else insisting that God “gives special children to special parents.” I understood that impulse: Walker had given my life shape, possibly even meaning. But Walker had also made our lives hell. On the hellish days the mawkish sermonizing about angels and specialness felt like rank self-delusion, the work of anxious cheerleaders desperate to justify themselves to a cynical high school. Disability is no different from politics or even college football: it divides and politicizes people according to their need, simplifying dark and unanswerable experience into a dependable, reassuring stance. But the details of Walker’s life belied any certain path. Johanna had been in touch with Brenda Conger’s CFC network early on, before the Internet existed. But she was impatient then for specific advice, for skin creams and therapies that would help right away. “It seemed to be a lot about Jesus and angels and thinking of the kids as gifts from God,” she told me years later. It was hard to think of Walker as a gift from God, unless God was a sadist who bore a little boy a grudge.
Then, one day when he was 2 years old I realized I was so obsessed with finding his problem and fighting this battle myself that I wasn’t enjoying him … because I was so heartbroken over my dream of “normal” [being] crushed. So, from that point on I accepted Logan as Logan, and I didn’t think about what he should or could be doing but what he WAS doing. Though there are hard days and challenges, there are many GOOD days and now this life for me is normal. I promise it will get easier.
By the time Jaime was eleven, she was too much for Lana and her husband to look after (especially alongside their three other children), and she went to live in one of the top group homes in the United States, in Idaho. “That was the most dramatic, the most difficult thing I have ever done,” Lana said. “There was this hole in my heart.
Melissa’s incredibly empathetic to people, and to dogs and animals,” Fergus said then, on the extension, and I reeled again, in a way that has become familiar to me: crushing to hear a man speak about his daughter that way, reaching for nice things to say and coming up with her empathy for pets in his hand, like a fish he had to his own astonishment pulled from a fast river. I understood, believe me I understood, but it depressed me anyway. Every conversation I had with other CFC parents was like that. What drove Fergus especially crazy was that because of Melissa, he wasn’t allowed to have the same impulses and desires the rest of the world had—because to have regular ambitions for your own life meant you were putting yourself first, or even momentarily ahead of your all-consuming child.
It was as if some people, the government included (in that it made money hard to obtain), believed that Fergus might actually have time or even the desire, in the midst of the hell of looking after a disabled child, to try to use that disability to scam the government and its taxpayers.
“He’s taught us how to accept life for what it is, to deal with it as it comes up. You can be either stuck in a bad rut, or you pick up the pieces and go on the best we can. Right then and there [after Luke was born], we just changed our ways. We bought a camper and went camping, because he likes that. One of the biggest things Luke has taught us is to accept being different, not to be afraid of him.
“Without him, I would have been more interested in material things,” Angie said. “Stuff. And now, it’s just like, you know, I can do without it. I don’t need it. Just having your health and people that you love and a family that’s strong …”
She saw the entire process from a scientific height, as evidence of the elegance of human biology. “There are just so many things that can go wrong in conception,” she said. “The majority of pregnancies are spontaneously aborted, or miscarried very, very early in the pregnancy—it’s just nature’s way of allowing only the right combination to come to term. Even to be born, you are already one of a minority of conceptions—so much has had to go right to get to that point.” This was a new way of understanding Walker—instead of broken, he was simply slightly flawed, like a discounted but perfectly wearable pair of shoes at an outlet mall. He was still “a genetic configuration,” as Estep put it, “that is compatible with life, is a living, breathing human being. So there’s a wide variance. They all have two arms, two legs. Most of the children have a range of emotions. They’re human.”
“Emotionally, I still think if I was any kind of a mother he would still be at home.” She paused, and then the snap happened, as I knew it would. “I don’t feel like his mummy any more. I’m not the person he turns to now.” She was crying, I could tell without looking. I could feel her start to go, as if the floor of the house were falling away. “He turns to others.” It was the best I could do. Yes, yes, she was nodding, there was that. “As long as someone loves him every day, I don’t care who it is.” Sobbing now, one of her fast, efficient sobs. He was an emptiness, a hole in our lives that would always be there. He was here with us and now he wasn’t. Did facing the wound every day make us better people? No. Did we have a choice? No. Did it make us remember the wound? Yes. Does that change anything? I don’t know.
Johanna had been a superb mother, had done everything there was to do and had done it well, but she was convinced it was not enough. Certainly the world had ignored her plight, but it never let her believe she was guiltless either. A lot of CFC mothers felt the same way. Amy Hess and Molly Santa Cruz did, for instance, and they had stayed home to boot, had become the most proactive super disability-moms I knew. But there was no escaping their guilt: it lived deep in them, deep in the germline of the maternal.
When she spoke again she said, “I don’t know what Walker’s value is to the world. I’m not sure that I agree that his lasting value is to have touched people. That his whole life has to be this fucking Gandhi thing, making people feel better about themselves. I don’t think his life should only have value because he makes other people feel more contented with their own lives. I think his life should have a value of its own.”
But the social disapproval is still intense,” I said. “People don’t like to be reminded of the disabled. Why is that?” “I think people are frightened at seeing people with disability,” Vanier replied. “It might say to them, one day, you might have an accident and you will be disabled. You know, we are frightened of death. And the disabled are a sign of death.”
What is it that makes you open your heart to someone else?” Vanier asked. I stared at him. I had no answer. “A weak person,” Vanier said. “Someone who is saying, ‘I need you.’” If the need of the person is too great to be satisfied, as is often the case with parents looking after a severely disabled child on their own, the result is guilt and disaster. “But parents in a village where there are young people who are going to come and sit by Walker and take him for a walk, and all that sort of thing, then life changes. But alone, it’s death.
We all know we’re going to die. Some of us will die at the age of ten. Some of us will die at eighty-five. We begin in fragility, we grow up, we are fragile and strong at the same time, and then we go into the process of weakening. So the whole question of the human process is how to integrate strength and weakness. You talk about your vulnerability with Walker. Something happened to you, which people who haven’t lived what you’ve lived will never be able fully to understand—you have been able to become human by accepting your own vulnerability. Because you were able to say, I didn’t know what to do. “We’re in a society where we have to know what to do all the time. But if we move instead from the place of our weakness, what happens? We say to people, I need your help. And then you create community. And that’s what happened here.”
“The guilt. The guilt. The parents of the disabled were as a group the most pained people, because many of them feel guilty. They ask that terrible question, why has it happened to me? You find in the Knights chapter of St. John, when Jesus and his disciples meet a man born blind. And their immediate question is, why? Whose fault is it? Did he commit a sin, or did the parents commit a sin? Why do you have a son like that and why does someone else not have a son like that? Wracking your brains about that sort of stuff—we can spend a lot of time asking the wrong questions. The right question is, how can I help my son, to be happier? The wrong question is, is it my fault?”
I was near the end of my tether. His screaming had been non-stop for an hour, and under the relentless steamy Florida sun had expanded in my head to the point where the human agony it represented, the displacement and existential isolation it represented, were the only things I could hear or think about or even see: the white band of his noise became a strain of aural glaucoma, closing down all my other senses. I thought, “You know, my boy, there are times when I hate you”—which is not the attitude of the son of the first-time flier, but it was at least momentarily true, and Walker forced me, even allowed me, to admit it. He is the antidote to false consciousness. He will always remind me of where we truly are. And somehow—maybe because of the fierce light of his dogged-ness, or because we had survived another meltdown, another encounter with chaos—a force field of resilience formed around us, and gradually, with hiccupping tears and gulping breaths and finally sighs, he stopped crying, and sat back, and rode with me, with no strength left to do anything except take in the details of the passing world.
That’s the problem with an official policy of inclusion: you can never be who you really are. I suspect I feel in Disneyworld the way Walker feels in the real world: it has its charms, but mostly we don’t quite fit.
I go out often enough that I can recreate every foot of the route in my head. I tend to speed on the drive to get him; when I’m taking him back I am not so eager. Even after three years, the departures (kiss him goodbye more than once and give him a squeeze and kiss him a final time and then step quickly outside and pull the automatically locking front door of the house shut behind me and walk down the wheelchair ramp to the car) are like small deaths, as if the sun is slowly dimming. As if something wicked and deeply unnatural is occurring.
Everything he likes is so important to me. They feel like accomplishments.
This entire review has been hidden because of spoilers.
December 15, 2017
ربما سأكتفي بالقول أن هذا الكتاب من الكتب التي تغير نظرتك لأمور في الحياة . تجعلك تلاحظ اشياء لطالما كانت موجودة لكنها في النقطة العمياء أمامك مباشرة بدون ان تلاحظها .
ولد ووكر بطفرة وراثية شديدة الندرة حتى إن الأطباء يسمونها متلازمة يتيمة؛ إذ ربما يوجد على الاكثرسوى 300 شخص فقط في العالم مصابين بها تسمى «متلازمة القلب والوجه والجلد»
يستعرض الكتاب قصة ووكرمن يوم ولادتهن رحلة الوالد و الأسرة مع ابنهم المعاقو تغير نمط حياتهممن أجل هذا المخلوق الفريد الذي تساءل والده هل هو هبة ناذرة و غالية ؟عليه الاحتفاظ والمحافظة عليها.
- رغم قساوة الظروف و الحكاية لكن ما تجده في اين براون بصراحته الصادمة واسلوبه الساخرأيضاهو ايس الألم و المعاناة بقدر ما تجد الأمل و البحث الدؤوب عن الأفضل و ما يمكن عملهو ما لم يتم عمله من أجل ووكر ن رغم ما تكتنفه هذه الرحلة من شك وصعوبات كبيرة و انهاك....
- ووكر الطفل البريئ هو ليس مجرد ابن معاق هو مجموعة من الدروس في الابوة ،الاخوة ،الصداقة، الانسانية ،التضحية ، حسن التصرف ......
يجعلك الكتاب تتساءل عن ماهية الحياة ؟ العدل الالهي ؟ الحق في الحياة ؟ الله ضد الطبيعة و التطور و الوراثة ؟
عن جدوى صرف الملايير من الأموال و الاوقات من أجل 300 انسان في مقابل ملايين الناس التي تعاني سوء التغذية ، التعليم......
تتساءل عن حكمة الله ام قساوة الحياة ؟ الكتاب يخاطب الانسان داخلك .
- في ثنايا الكتاب صادفت اناسا انسانيتهم تتمنى الحصول على الجزء اليسير منها اخص بالذكر هنا " جان فانييه " "jean vanier" صاحب مؤسسةخيرية و كاتب كبير عرفته هنا له كتاب " Becoming Human " واحد من اائل المفكرين في العالمفيما يتعلف بموضوع الاعاقة
قد تخجل من التشكي عند قراءتك لهذا الكتاب .
تقييمي 7/10
افضل الاقتباسات : كثيرة جدا
* فما قيمةُ حياةٍ مثل حياته؛ حياة تُعَاش في الظل، وغالبًا في ألمٍ؟ وما قيمة حياته عند مَن حوله؟
* أحيانًا تُشبه مشاهدةُ ووكر النظرَ إلى القمر؛ فأنت ترى وجه رجلٍ في القمر، ولكنك تُدرك أنه لا يوجد أيُّ شخص بالفعل هناك. ولكن إذا كان ووكر لا قيمةَ له، فَلِمَ يحمل هذا القدْر من الأهمية بالنسبة إليَّ؟
*ادوارد هوبز "سواء أردنا ذلك أم لا، فنحن جميعًا مرتبطون بالأرض، بتجاربنا بالحياة وتفاعلات العقل والقلب والعين، ومشاعرنا لا تتكون البتة من الشكل واللون والتصميم؛ وبهذا فإننا نترك جانبًا كبيرًا من الحياة أظن أنه من المهم التعبير عنه بالرسم، والذي لا يمكن التعبير عنه في الأدب "
* "يقول البوذيون: إن الطريق إلى التنوير، إلى أن تكون كائنًا نقيٍّا، هو أن تنفصل تمامًا بذهنك عن العالم الخارجي. لا أحاول أن أكون مبتذلًا، ولكن ووكر يعرف بالفعل كيف يفعل ذلك؛ فهو كائن نقي، قد يكون لديه تأخُّرفي النمو، أو تأخُّر عقلي متوسط،ولكنه بهذه الطريقة، يسبق معظمنا بالفعل بمسافة كبيرة"
* أولويات الحكومة واضحة: المعاقون لا يصوِّتون؛ لذا لا يستحقون اهتمامًا فرديٍّا كبيرًا، ولا تناسبهم الخطة الحكومية؛ أية خطة.
*كان هناك كلام كثير حول موضوع الرب والملائكة واعتبار الأطفال هبات من لله من الصعب اعتبار ووكر هبةً من الرب، إلا إذا كان الرب ساديٍّا ينتقم منَّا في شخص الولد الصغير !
*جون فانييه :
**" المعاقون قادرون على تعليم الأصحاء اكثر مما يستطيع الاصحاء تعليمهم اياها "
**:" المعاقون من بين أكثر الناس اضطهادا في العالم "
** "في رأيي يصاب الناس بالذعر عند رؤية المعاقين؛ فهذه الرؤية قد توحي إليهم بأنه في أحد الأيام قد تحدث لهم حادثة ويصبحون معاقين. فأنت تعلم، كلنا نخشى الموت، والمعاقون علامة على الموت ".
* *" كن كما أنت، ودَعِ الحياةَ تسير، وما هو مكتوب سيحدث. وأعظم خوف يخشاهالإنسان هو الخوف من القوة، الخوف من الفشل، الخوف من الذنب. أن نكون مذنبين...."
* قد يكون الهدف من وجود المعاقين عقليا مثل ووكر ان يحررونا من العقم الصارخ لنظرية البقاء للاصلح
* ففي عالم ما قبل العلم، عصر شكسبير وسرفانتس، حين كان لكلٍّ من الفن والخيمياء والمنطق والوحي السماوي والخبرة نفس المكانة، كان الجنون كرمح مباشِرفي ظلام الوجود الإنساني. الإنسان الذي وُلِد للألم والحزن، فقط ليواجِه .....الموت.
* جوليان هاكسلي " تمنعنا من المعاناة بما نشعر أنه ظلم على يد الكون؛ كالتشوُّه الخِلْقي، والمعاناة غير المبررة،والكوارث المادية، والموت المبكر للأحباب، ويمثِّل مثل هذا الظلم الكوني عناد الحظ وعدم أخلاقيته في الحياة البشرية؛ فنحن قد نقلِّل بالتدريج مقداره ولكنَّا لن نلغيه بالتأكيد، فالإنسان هو وريث التطور، ولكنه أيضًا شهيده.لكن ليس الإنسان فقط وريث الماضي وضحية الحاضر؛ فهو أيضًا العامل الذي من خلاله قد يكشف لنا التطوُّر عن احتمالاته الأخرى … فيمكنه وضع أخلاقه في قلب التطوُّر" من مقال الأخلاقيات التطورية
ولد ووكر بطفرة وراثية شديدة الندرة حتى إن الأطباء يسمونها متلازمة يتيمة؛ إذ ربما يوجد على الاكثرسوى 300 شخص فقط في العالم مصابين بها تسمى «متلازمة القلب والوجه والجلد»
يستعرض الكتاب قصة ووكرمن يوم ولادتهن رحلة الوالد و الأسرة مع ابنهم المعاقو تغير نمط حياتهممن أجل هذا المخلوق الفريد الذي تساءل والده هل هو هبة ناذرة و غالية ؟عليه الاحتفاظ والمحافظة عليها.
- رغم قساوة الظروف و الحكاية لكن ما تجده في اين براون بصراحته الصادمة واسلوبه الساخرأيضاهو ايس الألم و المعاناة بقدر ما تجد الأمل و البحث الدؤوب عن الأفضل و ما يمكن عملهو ما لم يتم عمله من أجل ووكر ن رغم ما تكتنفه هذه الرحلة من شك وصعوبات كبيرة و انهاك....
- ووكر الطفل البريئ هو ليس مجرد ابن معاق هو مجموعة من الدروس في الابوة ،الاخوة ،الصداقة، الانسانية ،التضحية ، حسن التصرف ......
يجعلك الكتاب تتساءل عن ماهية الحياة ؟ العدل الالهي ؟ الحق في الحياة ؟ الله ضد الطبيعة و التطور و الوراثة ؟
عن جدوى صرف الملايير من الأموال و الاوقات من أجل 300 انسان في مقابل ملايين الناس التي تعاني سوء التغذية ، التعليم......
تتساءل عن حكمة الله ام قساوة الحياة ؟ الكتاب يخاطب الانسان داخلك .
- في ثنايا الكتاب صادفت اناسا انسانيتهم تتمنى الحصول على الجزء اليسير منها اخص بالذكر هنا " جان فانييه " "jean vanier" صاحب مؤسسةخيرية و كاتب كبير عرفته هنا له كتاب " Becoming Human " واحد من اائل المفكرين في العالمفيما يتعلف بموضوع الاعاقة
قد تخجل من التشكي عند قراءتك لهذا الكتاب .
تقييمي 7/10
افضل الاقتباسات : كثيرة جدا
* فما قيمةُ حياةٍ مثل حياته؛ حياة تُعَاش في الظل، وغالبًا في ألمٍ؟ وما قيمة حياته عند مَن حوله؟
* أحيانًا تُشبه مشاهدةُ ووكر النظرَ إلى القمر؛ فأنت ترى وجه رجلٍ في القمر، ولكنك تُدرك أنه لا يوجد أيُّ شخص بالفعل هناك. ولكن إذا كان ووكر لا قيمةَ له، فَلِمَ يحمل هذا القدْر من الأهمية بالنسبة إليَّ؟
*ادوارد هوبز "سواء أردنا ذلك أم لا، فنحن جميعًا مرتبطون بالأرض، بتجاربنا بالحياة وتفاعلات العقل والقلب والعين، ومشاعرنا لا تتكون البتة من الشكل واللون والتصميم؛ وبهذا فإننا نترك جانبًا كبيرًا من الحياة أظن أنه من المهم التعبير عنه بالرسم، والذي لا يمكن التعبير عنه في الأدب "
* "يقول البوذيون: إن الطريق إلى التنوير، إلى أن تكون كائنًا نقيٍّا، هو أن تنفصل تمامًا بذهنك عن العالم الخارجي. لا أحاول أن أكون مبتذلًا، ولكن ووكر يعرف بالفعل كيف يفعل ذلك؛ فهو كائن نقي، قد يكون لديه تأخُّرفي النمو، أو تأخُّر عقلي متوسط،ولكنه بهذه الطريقة، يسبق معظمنا بالفعل بمسافة كبيرة"
* أولويات الحكومة واضحة: المعاقون لا يصوِّتون؛ لذا لا يستحقون اهتمامًا فرديٍّا كبيرًا، ولا تناسبهم الخطة الحكومية؛ أية خطة.
*كان هناك كلام كثير حول موضوع الرب والملائكة واعتبار الأطفال هبات من لله من الصعب اعتبار ووكر هبةً من الرب، إلا إذا كان الرب ساديٍّا ينتقم منَّا في شخص الولد الصغير !
*جون فانييه :
**" المعاقون قادرون على تعليم الأصحاء اكثر مما يستطيع الاصحاء تعليمهم اياها "
**:" المعاقون من بين أكثر الناس اضطهادا في العالم "
** "في رأيي يصاب الناس بالذعر عند رؤية المعاقين؛ فهذه الرؤية قد توحي إليهم بأنه في أحد الأيام قد تحدث لهم حادثة ويصبحون معاقين. فأنت تعلم، كلنا نخشى الموت، والمعاقون علامة على الموت ".
* *" كن كما أنت، ودَعِ الحياةَ تسير، وما هو مكتوب سيحدث. وأعظم خوف يخشاهالإنسان هو الخوف من القوة، الخوف من الفشل، الخوف من الذنب. أن نكون مذنبين...."
* قد يكون الهدف من وجود المعاقين عقليا مثل ووكر ان يحررونا من العقم الصارخ لنظرية البقاء للاصلح
* ففي عالم ما قبل العلم، عصر شكسبير وسرفانتس، حين كان لكلٍّ من الفن والخيمياء والمنطق والوحي السماوي والخبرة نفس المكانة، كان الجنون كرمح مباشِرفي ظلام الوجود الإنساني. الإنسان الذي وُلِد للألم والحزن، فقط ليواجِه .....الموت.
* جوليان هاكسلي " تمنعنا من المعاناة بما نشعر أنه ظلم على يد الكون؛ كالتشوُّه الخِلْقي، والمعاناة غير المبررة،والكوارث المادية، والموت المبكر للأحباب، ويمثِّل مثل هذا الظلم الكوني عناد الحظ وعدم أخلاقيته في الحياة البشرية؛ فنحن قد نقلِّل بالتدريج مقداره ولكنَّا لن نلغيه بالتأكيد، فالإنسان هو وريث التطور، ولكنه أيضًا شهيده.لكن ليس الإنسان فقط وريث الماضي وضحية الحاضر؛ فهو أيضًا العامل الذي من خلاله قد يكشف لنا التطوُّر عن احتمالاته الأخرى … فيمكنه وضع أخلاقه في قلب التطوُّر" من مقال الأخلاقيات التطورية
November 27, 2019
I assigned myself the job of reading this book. I had some idea of the subject matter and themes, and I thought it would be a helpful counter to my deep-seated belief that my own worth stems almost entirely from what I am able to accomplish; that my value lies in the number of tasks I complete. I tell myself that I am more generous to other people, and that I believe in the instrinsic worth of everyone else in the world (just not me) but I also know that it's very hard to truly extend to others the grace that you withhold from yourself.
This book is about Ian Brown's son Walker, who is severely disabled. In the book, Brown asks what is the source of Walker's value, what is the value of his life, and what lessons Walker offers to the people in his life.
Obviously my notion that worth derives from productivity is very ableist (and probably capitalist, too?), which is what led me to this book. If people like Walker are worthy, valuable, if they have something to offer, then maybe it's okay for me to go a couple of days without ticking off any boxes on my numerous to-do lists.
And I think my assignment worked. I think my heart grew two sizes, or maybe half a size, in reading this book. Ian Brown is thorough in his examination of this question, consulting everyone from the founder of the L'Arche homes for people with intellectual disabilities, to the caregivers who help look after Walker. He explores the ideas of value, happiness, moments of grace and joy.
All that didn't stop me from going to bed last night feeling quite pleased with myself for completing many tasks that day. Baby steps.
This book is about Ian Brown's son Walker, who is severely disabled. In the book, Brown asks what is the source of Walker's value, what is the value of his life, and what lessons Walker offers to the people in his life.
Obviously my notion that worth derives from productivity is very ableist (and probably capitalist, too?), which is what led me to this book. If people like Walker are worthy, valuable, if they have something to offer, then maybe it's okay for me to go a couple of days without ticking off any boxes on my numerous to-do lists.
And I think my assignment worked. I think my heart grew two sizes, or maybe half a size, in reading this book. Ian Brown is thorough in his examination of this question, consulting everyone from the founder of the L'Arche homes for people with intellectual disabilities, to the caregivers who help look after Walker. He explores the ideas of value, happiness, moments of grace and joy.
All that didn't stop me from going to bed last night feeling quite pleased with myself for completing many tasks that day. Baby steps.
November 24, 2012
The boy in the moon is Brown’s son, who has an extremely rare genetic disease that has given him both mental and physical handicaps. CFC- cardiofaciocutaneous- syndrome is not a hereditary disease but one that randomly crops up, so the author and his wife had no inkling that their second child might not be like their first one. Walker cannot speak or even swallow (he is fed through a tube directly into his stomach) or control his bladder or bowels, and requires constant care, which his parents (both writers and so home a great deal of the time) and a nanny provide for him at home for the first 11 years of his life. The hardest part of dealing with him, however, is not the diapers or lifting a child growing into his teens or the fact that they never get to sleep an entire night, but the fact that Walker hits himself in the head all the time. As one can guess, that’s agonizing to watch. And it finally comes to a point where they just can’t do it by themselves anymore, physically or emotionally; they have to place Walker in a home.
The first part of the book is biographical: Walker’s and their history, what they did and how they did it. The second half is spiritual and philosophical: what is the meaning of Walker’s limited life? What is the meaning of anyone with a mental handicap? What do they teach the rest of the population? The author gives us a history of how the mentally handicapped and mentally ill have been treated in the past- for the most part, horribly. He spends a good deal of time with the people of a group of communities called L’Arche, founded by Vanier in France forty years ago and extending into Canada and the USA now. In these small communities, the mentally handicapped are treated as the norm. They and their care givers have meals together, go out into the towns, and are all equals. It’s a fairly ideal situation, and there is a twenty year waiting list for people to get into these communities. The home that Walker is in isn’t quite as good as L’Arche, but it’s pretty good. Brown also makes great efforts to medically understand Walker’s disease; he has genetic tests done to try and get a positive diagnosis of CFD (he doesn’t) and an MRI to see what Walker’s brain looks like. He goes from place to place, trying to find out how Walker works, whether Walker has any sense of self. He keeps hoping that there is some way to ‘fix’ Walker.
In the end, Brown really gets no answers. Walker has made his father into a different person that he was before- less selfish, more attuned to others, more appreciative of his friends and family, and, finally, a person who has to accept that Walker cannot be fixed, he can only be loved for who he is. If he has a ‘purpose’, other than to just live, if may be that.
The book is, frankly, pretty grim. No matter how much love there is, taking care of someone who is severely handicapped is hard work and it’s very hard on families. That they were able to keep Walker home for over 10 years is testament to their devotion. But despite its grimness, the book is a well written meditation of what it means to have a family member with a mental disability.
The first part of the book is biographical: Walker’s and their history, what they did and how they did it. The second half is spiritual and philosophical: what is the meaning of Walker’s limited life? What is the meaning of anyone with a mental handicap? What do they teach the rest of the population? The author gives us a history of how the mentally handicapped and mentally ill have been treated in the past- for the most part, horribly. He spends a good deal of time with the people of a group of communities called L’Arche, founded by Vanier in France forty years ago and extending into Canada and the USA now. In these small communities, the mentally handicapped are treated as the norm. They and their care givers have meals together, go out into the towns, and are all equals. It’s a fairly ideal situation, and there is a twenty year waiting list for people to get into these communities. The home that Walker is in isn’t quite as good as L’Arche, but it’s pretty good. Brown also makes great efforts to medically understand Walker’s disease; he has genetic tests done to try and get a positive diagnosis of CFD (he doesn’t) and an MRI to see what Walker’s brain looks like. He goes from place to place, trying to find out how Walker works, whether Walker has any sense of self. He keeps hoping that there is some way to ‘fix’ Walker.
In the end, Brown really gets no answers. Walker has made his father into a different person that he was before- less selfish, more attuned to others, more appreciative of his friends and family, and, finally, a person who has to accept that Walker cannot be fixed, he can only be loved for who he is. If he has a ‘purpose’, other than to just live, if may be that.
The book is, frankly, pretty grim. No matter how much love there is, taking care of someone who is severely handicapped is hard work and it’s very hard on families. That they were able to keep Walker home for over 10 years is testament to their devotion. But despite its grimness, the book is a well written meditation of what it means to have a family member with a mental disability.
May 19, 2011
A writer describes the effects on his family and life when he and his wife have a child with a rare genetic disorder, cardiofaciocutaneous syndrome (CFC). The condition is so rare that only tens of individuals are known with the disorder in the 90s. HIs son is profoundly developmentally retarded. No speech. Cognition not expected to advance beyond the comparative age of 2 or 3. The physicians have difficulty diagnosising it. Since it is so rare, predictions based are effects in others are weak. It is genetic but not inherited; the cause is a mutation occuring during early embryonic development. Later in the book they describe studies to find the genes responsible and the mutations responsible. Rare conditions are poorly funded. Spontaneous mutations mean that every case is likely to be different, and therefore requires more testing.
The first part of the book describes the discovery of the problem and its effect on the family. They adapt. But it is a profound adaptation. The author does a wonderful job describing the combination of love for his son, guilt when he finds himself longing for a normal life, guilt wondering if he is doing enough, joy at simple communication and pleasures with his son and difficulties sharing him with outside facilities when the son becomes too much for he and his wife to care for.
The last part of the book is an exploration of the work of such handicapped people. He discovers different types of homes for the developmentally handicapped and discusses what it means to him as a caring parent. He discovers a community called "L'Arche" (French for Ark, as in Noah and the...). In this community, ... you will have to read it. He is a writer and describes it much better. But it is the most interesting aspect of the book. The philosophy of L'Arch and its founder, Jean Vanier centers around creation of a community rather than institutional care-taking. But what has the most profound effect on the writer of the book is to discover that the questions asked by the residents (they are not called patients)upon meeting someone new is, "Do you like me? Will you be my friend?"
The first part of the book describes the discovery of the problem and its effect on the family. They adapt. But it is a profound adaptation. The author does a wonderful job describing the combination of love for his son, guilt when he finds himself longing for a normal life, guilt wondering if he is doing enough, joy at simple communication and pleasures with his son and difficulties sharing him with outside facilities when the son becomes too much for he and his wife to care for.
The last part of the book is an exploration of the work of such handicapped people. He discovers different types of homes for the developmentally handicapped and discusses what it means to him as a caring parent. He discovers a community called "L'Arche" (French for Ark, as in Noah and the...). In this community, ... you will have to read it. He is a writer and describes it much better. But it is the most interesting aspect of the book. The philosophy of L'Arch and its founder, Jean Vanier centers around creation of a community rather than institutional care-taking. But what has the most profound effect on the writer of the book is to discover that the questions asked by the residents (they are not called patients)upon meeting someone new is, "Do you like me? Will you be my friend?"
May 13, 2011
I considered giving this book a lower rating, then realized that I wasn't seeing the forest for the trees. I was quibbling with the accuracy of some of the medical/genetic information that Brown presented; I had no questions, though, with the depth of thought and feeling and the eloquence in which he conveys them in this memoir about being the father of a profoundly disabled child.
Every special needs child and family has a unique journey. Different family circumstances, different limitations and needs, and different sets of resources make each path individual. But all families must ask, at least on some level, the same questions: What value does my child's life have? I am enough for this child? Where do we fit in this society that seems ill-equipped to accept and nuture both family and child? Does my child's suffering have meaning?
Brown explores all of these questions and more. His answers were not always the same as mine, or didn't satisfy my unanswered ones, but his approach and analysis were similar enough that I felt a kinship with him on his journey.
His writing is not linear and is much like the lives of our children. While it seems haphazard, there is a flow that is hard to describe yet it gives in form and structure. I found comfort in the chaos.
For obvious reasons, I can't be objective about this book. I hope that his wife writes one someday, too, because so many of her thoughts and feelings are conveyed in this book and would be interesting on their own.
Every special needs child and family has a unique journey. Different family circumstances, different limitations and needs, and different sets of resources make each path individual. But all families must ask, at least on some level, the same questions: What value does my child's life have? I am enough for this child? Where do we fit in this society that seems ill-equipped to accept and nuture both family and child? Does my child's suffering have meaning?
Brown explores all of these questions and more. His answers were not always the same as mine, or didn't satisfy my unanswered ones, but his approach and analysis were similar enough that I felt a kinship with him on his journey.
His writing is not linear and is much like the lives of our children. While it seems haphazard, there is a flow that is hard to describe yet it gives in form and structure. I found comfort in the chaos.
For obvious reasons, I can't be objective about this book. I hope that his wife writes one someday, too, because so many of her thoughts and feelings are conveyed in this book and would be interesting on their own.
August 28, 2010
Parenting, especially parenting well, is the hardest task imaginable; but I've wondered often how parents of disabled children manage the pain, the heartache, the endless work. "Through [the hard work, the smells, the intense emotion, the crises:], you hold your child's body, hold its flesh and heat close to you, like a skin of fire, because our need to make us shamelsess,but touch is our truest hunger. Just hang on. Just hang on. Just hang on. Just hang on." The intense fatigue caused by sleeping with his boy caused"my wife and I to fight a lot."
A doctor stated, "The Buddhists say the way to to pure being, is by getting your mind out of the way. Walker already knows how to do that. He is pure being. He may be developmentally delayed or moderately retarded, but in that way, he's already miles ahead of most of us."
"Walker had given my life shape, possibly even meaning. Bug Walker had also made our lives hell."
Brown is best when he is describing his life with his son. It's an incredibly touching work that centres around how much a life — and especially a severely physically and intellectually disabled life — is worth. When he digress to talking about other parents and children the book looses moment, but picks up nearer the end of the book. Well written. It is a must read with a small amount of skimming.
A doctor stated, "The Buddhists say the way to to pure being, is by getting your mind out of the way. Walker already knows how to do that. He is pure being. He may be developmentally delayed or moderately retarded, but in that way, he's already miles ahead of most of us."
"Walker had given my life shape, possibly even meaning. Bug Walker had also made our lives hell."
Brown is best when he is describing his life with his son. It's an incredibly touching work that centres around how much a life — and especially a severely physically and intellectually disabled life — is worth. When he digress to talking about other parents and children the book looses moment, but picks up nearer the end of the book. Well written. It is a must read with a small amount of skimming.
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