My Own Blood: A Memoir of Madness and Special Needs Parenting
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- Create Date：2021-04-15 15:51:20
- Update Date：2025-09-06
- Status：finish
- Author：Ashley Bristowe
- ISBN：0735278164
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Summary
Mothering under normal circumstances takes all you have to give。 But what happens when your child is disabled， and sacrificing all you've got and more is the only hope for a decent future？ Full of rage and resilience， duty and love， Ashley Bristowe delivers a mother's voice like no other we've heard。
When their second child， Alexander， is diagnosed with a rare genetic disorder， doctors tell Ashley Bristowe and her husband that the boy won't walk， or even talk--that he is profoundly disabled。 Stunned and reeling， Ashley researches a disorder so new it's just been named--Kleefstra Syndrome--and she finds little hope and a maze of obstacles。 Then she comes across the US-based "Institutes，" which have been working to improve the lives of brain-injured children for decades。 Recruiting volunteers， organizing therapy， juggling a million tests and appointments， even fundraising as the family falls deep into debt， Ashley devotes years of 24/7 effort to running an impossibly rigorous diet and therapy programme for their son with the hope of saving his life， and her own。 The ending is happy: he will never be a "normal" boy， but Alexander talks， he walks， he swims， he plays the piano （badly） and he goes to school。
This victory isn't clean and it's far from pretty; the personal toll on Ashley is devastating。 "It takes a village，" people say， but too much of their village is uncomfortable with her son's difference， the therapy regimen's demands and the family's bottomless need。 The health and provincial services bureaucracy set them a maddening set of hoops to jump through， showing how disabled children and their families languish because of criminally low expectations about what can be done to help。
My Own Blood is an uplifting story， but it never shies away from the devastating impact of a baby that science couldn't predict and medicine couldn't help。 It's the story of a woman who lost everything she'd once been--a professional， an optimist， a joker， a capable adult--in sacrifice to her son。 An honest account of a woman's life turned upside down。
When their second child， Alexander， is diagnosed with a rare genetic disorder， doctors tell Ashley Bristowe and her husband that the boy won't walk， or even talk--that he is profoundly disabled。 Stunned and reeling， Ashley researches a disorder so new it's just been named--Kleefstra Syndrome--and she finds little hope and a maze of obstacles。 Then she comes across the US-based "Institutes，" which have been working to improve the lives of brain-injured children for decades。 Recruiting volunteers， organizing therapy， juggling a million tests and appointments， even fundraising as the family falls deep into debt， Ashley devotes years of 24/7 effort to running an impossibly rigorous diet and therapy programme for their son with the hope of saving his life， and her own。 The ending is happy: he will never be a "normal" boy， but Alexander talks， he walks， he swims， he plays the piano （badly） and he goes to school。
This victory isn't clean and it's far from pretty; the personal toll on Ashley is devastating。 "It takes a village，" people say， but too much of their village is uncomfortable with her son's difference， the therapy regimen's demands and the family's bottomless need。 The health and provincial services bureaucracy set them a maddening set of hoops to jump through， showing how disabled children and their families languish because of criminally low expectations about what can be done to help。
My Own Blood is an uplifting story， but it never shies away from the devastating impact of a baby that science couldn't predict and medicine couldn't help。 It's the story of a woman who lost everything she'd once been--a professional， an optimist， a joker， a capable adult--in sacrifice to her son。 An honest account of a woman's life turned upside down。
Reviews
Moonira
，
Ashley is so honest about that crazy balancing act of being a person and also a parent。。。She writes so poignantly about how dreams and goals had to be recalibrated， about reinventing herself because she was on a path she never imagined。 I was overwhelmed by Ashley's strength and determination to dig in and move forward。 And oh my goodness， you find yourself celebrating and sinking into all the moments of this wonderfully written journey （the audiobook is pretty fun to listen to as well）。 As well Ashley is so honest about that crazy balancing act of being a person and also a parent。。。She writes so poignantly about how dreams and goals had to be recalibrated， about reinventing herself because she was on a path she never imagined。 I was overwhelmed by Ashley's strength and determination to dig in and move forward。 And oh my goodness， you find yourself celebrating and sinking into all the moments of this wonderfully written journey （the audiobook is pretty fun to listen to as well）。 As well， this book made me reflect on how it is to be a therapist 'in the system' working with families who are moving through incredible journeys with their children--how we are with them， and moreso， how we can do better to support。 It is a great book if you are a pediatric therapist of any kind。 。。。more
Jan Markley
，
Riveting and gripping。 This isn’t your typical ‘rainbows， cupcakes， and unicorns what I learned about love from my disabled child’ memoir。 Ashley Bristowe book My Own Blood: A Memoir of Madness and Special Needs Parenting is a raw and visceral account of the cataclysmic rupture a disabled child has to a family， and the impact it makes on every aspect of your life: financial， emotional， psychological， and physical。 Her story takes us inside her existential reckoning as she comes to terms with the Riveting and gripping。 This isn’t your typical ‘rainbows， cupcakes， and unicorns what I learned about love from my disabled child’ memoir。 Ashley Bristowe book My Own Blood: A Memoir of Madness and Special Needs Parenting is a raw and visceral account of the cataclysmic rupture a disabled child has to a family， and the impact it makes on every aspect of your life: financial， emotional， psychological， and physical。 Her story takes us inside her existential reckoning as she comes to terms with the reality of having a disabled son in a society that doesn’t want to know， and loving her boy on his terms。 Against the advice of well meaning family， friends， and conventional medical doctors who tell her to accept that her son will never talk or walk， she starts an unconventional intensive therapy program that takes her to the brink of her sanity。 As her acceptance of the diagnosis incrementally deepens and her son incrementally improves， she understands that in saving her son she is saving her family and ultimately herself。 Bristowe gives voice to every parent’s deepest fear and the self-destructive feelings that accompany their darkest hour。 When I say it’s raw， I mean raw like your skin after you’ve popped a wheelie on your banana bike and wiped out on gravel。 。。。more
Andrew Taylor
，
You will find yourself re-reading passages just for the turn of phrase or the never-before-heard similes。 Bristowe's writing is entertaining， to be sure: I kept searching the text for a "like button" （weird reflex， but there it is）。 The paradox， though， is that as much as you'll enjoy the agility of her prose， her message is profound and unsettling。 You'll read and read， only to feel beaten bloody by the narrative when you finally put it down for a meal or to go pick up your own kids。。。 A must-r You will find yourself re-reading passages just for the turn of phrase or the never-before-heard similes。 Bristowe's writing is entertaining， to be sure: I kept searching the text for a "like button" （weird reflex， but there it is）。 The paradox， though， is that as much as you'll enjoy the agility of her prose， her message is profound and unsettling。 You'll read and read， only to feel beaten bloody by the narrative when you finally put it down for a meal or to go pick up your own kids。。。 A must-read for all families， friends， caregivers， health providers and （yes） politicians invested in the welfare of special needs individuals。 There is heart， grit， love， defeat， and exhausted hope from a smart， capable， and committed parent， who expects the same of you as a reader。 Definitely worth the brain calluses。 。。。more
Jana E
，
This book made me laugh， cry， feel ashamed and feel empowered。 That is a lot of feelings for someone who isn’t a parent at all， but the gut-wrenchingly honest tone of this book which is filled with both hope and despair， all packaged in a funny while-now-you-know tone， evokes ALL the feels。If ever you’ve felt alone while you tried to do the impossible because there were no other options， you'll be able to relate。 This book made me laugh， cry， feel ashamed and feel empowered。 That is a lot of feelings for someone who isn’t a parent at all， but the gut-wrenchingly honest tone of this book which is filled with both hope and despair， all packaged in a funny while-now-you-know tone， evokes ALL the feels。If ever you’ve felt alone while you tried to do the impossible because there were no other options， you'll be able to relate。 。。。more
Jennifer
，
This book is a soul rending combination of devastating and uplifting。 It does for motherhood with Glennon Doyle’s Untamed did for womanhood。 It is honest， brave， full of my favourite swearwords， and a voice that will resonate with women and parents everywhere。 It truly made me laugh， it truly made me cry， it made me cheer， swear along with her， and gasp at times in both delight and horror。 I could not put it down， except when I needed to catch my breath。 Highly recommend it。
Carla Bellamy
，
It’s amazing how this brilliant， funny， bracingly honest book about parenting a special needs child perfectly encapsulates the rage， exhaustion， isolation， and borderline madness I’ve gone through attempting to parent two standard-issue children through this pandemic while also trying to maintain some semblance of a so-called professional life。 For me， Ashley Bristowe’s sharp， hilarious， pitch-perfect description of what it feels like get up every morning to run another leg of a seemingly endles It’s amazing how this brilliant， funny， bracingly honest book about parenting a special needs child perfectly encapsulates the rage， exhaustion， isolation， and borderline madness I’ve gone through attempting to parent two standard-issue children through this pandemic while also trying to maintain some semblance of a so-called professional life。 For me， Ashley Bristowe’s sharp， hilarious， pitch-perfect description of what it feels like get up every morning to run another leg of a seemingly endless and decidedly unfun obstacle course was totally absorbing and validating。 And while this memoir made me laugh really hard， in its unflinching description of family relationships and painful truth-telling， it reminds me of Karl Ove Knausgaard’s My Struggle。 A challenging yet highly readable read。 。。。more
Renee Kerman
，
In her raw， poetic， and heart-wrenching memoir Ashley Bristowe takes the reader with her through the completely unexpected diagnosis of her son Alexander with a rare genetic disorder。 Despite the lack of support by the medical establishment， the government assistance programs， and her own extended family， Ashley， her husband and their young daughter undertake an extensive therapy program which transforms their house， diet， friendships， familial relationships and financial stability in order to u In her raw， poetic， and heart-wrenching memoir Ashley Bristowe takes the reader with her through the completely unexpected diagnosis of her son Alexander with a rare genetic disorder。 Despite the lack of support by the medical establishment， the government assistance programs， and her own extended family， Ashley， her husband and their young daughter undertake an extensive therapy program which transforms their house， diet， friendships， familial relationships and financial stability in order to unlock Alexander’s potential。 Fuelled by instinct and sheer single-mindedness， Ashley demonstrates a level of maternal love and commitment that strains her own mental and physical health。 At its core， this book is about dashed expectations and the strength it requires to forge tenuous new ones。 。。。more
Cherry Rob
，