{"product_id":"my-own-blood-isbn-9780735278189","title":"My Own Blood","description":"\u003cb\u003eMothering 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.\u003c\/b\u003e\u003cbr\u003e\u003cbr\u003eWhen 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.\u003cbr\u003e\u003cbr\u003eThis 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 gives them a maddening set of hoops to jump through, displaying criminally low expectations about what they can do to help.\u003cbr\u003e\u003cbr\u003e\u003ci\u003eMy Own Blood\u003c\/i\u003e 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.“Most books about raising children with serious disabilities aim for optimism, and sound exactly alike.  But once in a while, a gifted writer produces a brutally honest and utterly readable account of that dark, detailed, furious, unseen world, after which you can’t see ordinary life the same way again.  It’s a rare gift, but Ashley Bristowe’s \u003ci\u003eMy Own Blood\u003c\/i\u003e is that kind of book.  You need to read it, as soon as possible.” —\u003cb\u003eIan Brown\u003c\/b\u003e\u003cbr\u003e\u003cbr\u003e“\u003ci\u003eMy Own Blood\u003c\/i\u003e is like the clearest window pane, through which we have the privilege to observe, absorb, the extraordinary journey of love between a mother and her very special child, and also view the price she, and all of us, pay for freedom, perseverance, hope and fulfillment. A stunner of a memoir in which each sentence either sings or stings.” —\u003cb\u003eDeepa Mehta\u003c\/b\u003e\u003cbr\u003e\u003cbr\u003e“This memoir is as unputdownable as the best thriller. Really, I was awake until 3 AM reading this true story of a sharp-witted, foul-mouthed mother losing her mind as she saves (and utterly transforms) her severely disabled son’s life. Ashley Bristowe meets our collective silence about disability head-on and speaks, cries, sings and laughs in its (our) face. This is not a tidy depiction of singular heroism. It’s shockingly real, painful, hilarious, and, at times, terrifying. Over and over again, she shows how we, too, each of us, can and must summon the political will and the moral courage to respect, to love and to share our power with the most vulnerable people among us. An extraordinary testament to human connection. And swearing.” —\u003cb\u003eKaren Connolly\u003c\/b\u003e\u003cbr\u003e\u003cbr\u003e “Written with spare, feisty, sparkling prose, \u003ci\u003eMy Own Blood\u003c\/i\u003e places the reader squarely inside a human experience few could imagine but many must endure—raising a special-needs child amidst a society far less caring than we pretend to ourselves.  A gripping and defiant memoir of parental commitment, distress, struggle and vindication.” —\u003cb\u003eGabor Maté, MD\u003c\/b\u003e\u003cbr\u003e\u003cbr\u003e“\u003ci\u003eMy Own Blood\u003c\/i\u003e is a look-you-in-the-eye conversation about motherhood—the glory and the wretchedness. Ashley Bristowe tells her remarkable story with ferocious candour and hard-won insights into how we regard disability and parents who grapple with its challenges. A wonderful book, just bursting at the seams with bravery, honesty and heart. My own heart beat faster as I read it.” —\u003cb\u003eGill Deacon\u003c\/b\u003e\u003cbr\u003e\u003cbr\u003e“I was completely swept away by Ashley Bristowe’s book. For three days I could do nothing but read it. I felt totally immersed in her life, her struggles, and her thoughts. She writes about her son’s early years, not retrospectively, but in the midst of the experience, ongoingly, from that high-stakes perspective where nothing is resolved. I don’t think I will ever forget my encounter with her frankness, her devotion, her lostness, her immersion in the extremes of life, or her propulsive and urgent writing.” —\u003cb\u003eSheila Heti\u003cbr\u003e\u003cbr\u003e\u003c\/b\u003e“Bristowe has blended courage, bluntness, humour and terrific writing in [\u003ci\u003eMy Own Blood\u003c\/i\u003e].” —\u003ci\u003eEdmonton Sun\u003c\/i\u003e\u003cb\u003e\u003cbr\u003e\u003c\/b\u003eASHLEY BRISTOWE is a Canadian author and disability advocate. She is a past Ambassadorial Scholar with Rotary International in India. Co-founder of the YYC Women's March, she gives her time to feminist causes and mentorship, in particular protections of pro-choice work. In the 1980s she was the child star of ACCESS TV's \u003ci\u003eHarriet's Magic Hats. \u003c\/i\u003eShe is married to the author and journalist Chris Turner. They have two children.1.\u003cbr\u003e\u003cbr\u003eIn May 2009 I was nine months pregnant with my second child. In those last days before I delivered, our family was three: me, my husband and our four-year-old daughter. We lived in a little green house in  Ramsay,  a  Calgary  community  close  to  the  Stampede  grounds. I  was  an  editorial  and  portrait  photographer,  and  a  media  project manager. I loved my work; I was building a solid reputation as a book runner, and was never idle. My husband, Chris Turner—whom I call Turner, in this book and in real life—was (and remains) an award-winning writer on sustainability and climate change, though earlier in  his  career  he’d  written  an  international  bestseller  about  the  TV show \u003ci\u003eThe Simpsons\u003c\/i\u003e. We worked together on projects—him writing, me  shooting  photos,  researching  together—across  Canada  and abroad,  bringing  our  daughter,  Sloane,  with  us  when  we  travelled (which was often).\u003cbr\u003e\u003cbr\u003eOur  lives  were  unusual  in  Calgary.  We  were  some  of  the  only full-time freelance culture workers we knew of in the city. We’d head to Toronto a few times a year to see our Ontario friends and keep our professional  circles  alive,  but  lived  in  the  West,  where  being  a  full-time  writer  seemed  so  unlikely  that  for  the  first  year  after  Turner arrived,  people  didn’t  believe  he  was  working  on  a  book.  He  got, “Uh, but what do you \u003ci\u003ereally\u003c\/i\u003e do?”\u003cbr\u003e\u003cbr\u003eI was known locally as a photographer, but my business card still had “chase producer” on it too, from my earlier work in radio, which I’d loved. Albertans’ eyes would go wide, and many asked if I organized car chases for movies. I don’t know why this seemed more possible to people than Turner being a full-time writer.\u003cbr\u003e\u003cbr\u003eWe lived in Calgary because my father, Bruce, is here, and my brother,  John,  was  here,  and  I  had  other  relatives  in  town  and nearby. I’d grown up here. And the city has an international airport. We  didn’t  see  ourselves  in  Alberta  forever,  and  we  threw  around vague plans about moving back to Asia (where we’d been for a long stint  before  children),  or  maybe  buying  a  summer  shack  near Antigonish, Nova Scotia (where Turner’s people are from). But by 2009 we were settled in our bungalow on Spiller Road, and Calgary tempered by lots of travel did us fine. We had a trampoline, and a cat named Loki, and we threw a big annual Christmas party. We had  friends,  solid  neighbours,  and  a  car  that  worked  (this  last  is mandatory  for  survival  in  Calgary).  It  was  a  periodically-fancy-always-interesting life.\u003cbr\u003e\u003cbr\u003eWhen I was pregnant with the second baby, we had lots of cool plans for the coming year. We’d spend three months of that summer and  fall  doing  work  and  research  in  Europe,  with  the  kids  in  tow. Turner and I each had new book projects starting later on in the year, and I had grant money for travel to Dubai in early 2010 to explore a different direction with my photography: large-scale collage.\u003cbr\u003e\u003cbr\u003eThen, just after midnight on May 11, 2009, I went into labour. You  know  what  I’m  going  to  say  next,  because  the  story  is  clearly about to go sideways. We’d gone to bed with ten thousand ideas for the future, all of which were doable, achievable, or in progress. Less than twenty-four hours later our lives had changed totally—and forever. We now had a son, and we chose to name him Alexander.\u003cbr\u003e\u003cbr\u003eThat  was  the  last  independent,  unrushed,  unpanicked  decision we made for years to come.\u003cbr\u003e\u003cbr\u003e\u003cbr\u003eNow I have a special-needs child.\u003cbr\u003e\u003cbr\u003eIn real life I say, \u003ci\u003eHe was unexpectedly born disabled. Not unexpectedly born—we totally knew he was coming. But we didn’t know he’d be disabled\u003c\/i\u003e.\u003cbr\u003e\u003cbr\u003eThere’s an edge to the “not unexpectedly born” part that strikes people as funny. Helps them relax, before I gut-punch them with the bit nobody wants to hear.\u003cbr\u003e\u003cbr\u003eDid it work for you?\u003cbr\u003e\u003cbr\u003e—\u003cbr\u003e\u003cbr\u003eHere we go:\u003cbr\u003e\u003cbr\u003eThe pregnancy was normal, fine, even easy in comparison to my first. But soon after our boy arrived, it was clear there was something wrong. First “they” said it was a blood sugar problem, but then they noticed the other things—flared nostrils, a heart murmur, a forehead birthmark,  strange  ear  folds.  He  couldn’t  breathe  on  his  own  and needed to be in NICU, in a box, on oxygen. We met with Genetics on day three, a rush referral. The doctor came right to Alexander’s bedside and looked him over carefully. Dr. Innes was smart and reserved and funny, a type of man I enjoy. We might have been friends, had we met out in the regular world.\u003cbr\u003e\u003cbr\u003e“This is a syndrome of some kind,” he said, tracing two fingers down Alexander’s body, like half the sign of the cross. “See the midline  markers?  All  these  things  on  the  midline  of  his  body,  like  the hernia . . . or they repeat on both sides, like the folds on his ears.” He paused, and looked up. “We’ll run his DNA.”\u003cbr\u003e\u003cbr\u003eThey didn’t find anything, that first time. We wanted to believe there  was  nothing  to  find.  The  nurses  in NICU kept  saying,  “Don’t worry, it’s likely just routine to test him.” Later, the pediatrician said, “He’ll catch up.”\u003cbr\u003e\u003cbr\u003eBut Genetics kept at it. Months went by. Two more DNA tests, more specific, showed nothing.\u003cbr\u003e\u003cbr\u003eThen they found it.\u003cbr\u003e\u003cbr\u003e\u003cbr\u003eOur son has a chromosomal deletion. He’s missing a tiny piece off the bottom of one of his chromosomal pairs; these pairs are called alleles. Humans have twenty-three pairs of chromosomes, and they’re numbered. At the bottom of one of the alleles, in Alexander’s ninth pair, there’s a little piece missing. It was just never made.\u003cbr\u003e\u003cbr\u003eWhen  this  child  was  conceived,  something  went  wrong,  for  no reason  other  than  sometimes,  something  goes  wrong.  A  tiny  bit  of data wasn’t there in the sperm when it arrived, or in the egg when it exited  my  ovary,  or  the RNA sequence  was  copied  incorrectly  as Alexander’s  cells  divided  in  those  first  days  after  conception.  Then the  omission  replicated  over  and  over  as  the  little  fertilized  bunch went  from  2  cells  to  4  to  16  to  256,  and  exponentially  forth  from there, onward and expanding for nine months.\u003cbr\u003e\u003cbr\u003eA newborn baby has about 26 billion cells. And all of those cells in our son are missing one copy of a specific gene, called EHMT-1. The other allele in his ninth pair \u003ci\u003edoes\u003c\/i\u003e contain this gene, so our son has what’s  called  “haploid  expression”:  half  the  expression  of  this  one gene. The role of EHMT-1 is not conclusively determined. But missing one  copy  of  that  gene  on  the  ninth  pair  of  chromosomes  earns Alexander a diagnosis of Kleefstra syndrome.\u003cbr\u003e\u003cbr\u003eBut  that  came  later.  When  he  was  first  diagnosed,  it  was  still called  “9q34.3  telomeric  deletion  syndrome.”  Really  rolls  off  the tongue. Fewer than seventy-five cases had been identified worldwide when Alexander joined their ranks and our whole world changed.\u003cbr\u003e\u003cbr\u003eTurner  and  I  got  tested,  and  we  don’t  have  this  deletion,  and we’re not carriers. So our son’s deletion is considered \u003ci\u003ede novo\u003c\/i\u003e, Latin for “something spontaneous,” something that’s happened for the first time  in  our  genetic  line.  Translation:  it’s  not  my  fault  and  it’s  not Turner’s  fault.  You  might  think  this  doesn’t  matter,  but  it  matters. Being blameless is huge. When something like this goes wrong, fingers begin to point.\u003cbr\u003e\u003cbr\u003eAnd as I say, we didn’t know it was coming. I’d had the nuchal translucency test that checks the thickness of the fluid at the back of the  embryo’s  neck,  which  was  deemed  normal.  The  related  bloodwork  came  back  kind  of  funny,  but  without  actual  red  flags.  The doctors just looked at the results and said, “Huh.”\u003cbr\u003e\u003cbr\u003eWhen  I  said, \u003ci\u003e“Huh”  what?  Does  “huh”  mean  anything?\u003c\/i\u003e, they said, “No, no, it’s fine, just not what we usually see, but everything else is good. We don’t need to run it again.”\u003cbr\u003e\u003cbr\u003eAt about the twelve-week mark, I had an amniocentesis, mandated by the Alberta health-care system because I was thirty-five. I was the youngest  woman  in  the  waiting  room  and  considered  the  amnio  a formality. The procedure itself was gross and handled badly by the clinic, but the results came back “normal.”\u003cbr\u003e\u003cbr\u003eDid you know that amnios test for only the most common abnormalities?  Down  syndrome,  cystic  fibrosis,  Trisomy  18—that  stuff. I didn’t. They can test for other things if requested, and if they’d been looking for Kleefstra syndrome, in theory they could’ve detected it. But there’s such a low possibility of anything “going wrong” other than the handful of the most common going-wrong things that they don’t test for anything else. Kleefstra syndrome itself is an impossibly rare diagnosis, one in probably tens of millions. I was a believer in statistical probability. Ruling out just the common genetic problems made sense to pre-second-baby me.\u003cbr\u003e\u003cbr\u003eWe  were  on  holiday  at  my  father’s  holiday  house  in  Costa  Rica when  I  called  back  to  Calgary  for  the  results.  The  nurse  said, “Everything’s fine, all clear. Do you want to know the sex of the baby?”\u003cbr\u003e\u003cbr\u003eI said no, and hung up.\u003cbr\u003e\u003cbr\u003eDone and done, back to the pool.\u003cbr\u003e\u003cbr\u003e\u003cbr\u003eAnd five months later, Alexander was born.\u003cbr\u003e\u003cbr\u003e\u003cbr\u003e2.\u003cbr\u003e\u003cbr\u003eMy  water  broke  on  the  floor  of  our  bedroom  while  I  was  on  the phone with Peggy, my dad’s partner. She had called to tell me that my father is proud of me, that he thinks I am an exceptional mother. It was perfect timing. If she’d phoned even ten minutes later, I would have missed that simple and generous call.\u003cbr\u003e\u003cbr\u003eTurner  hustled  us  out  of  the  house  and  down  to  the  car.  My cousin Jana, who’d come to doula the birth, crammed in beside me and closed the passenger door as the next contraction came on. After it released, I glanced at the house as Turner struggled with the gear shift. Sloane was at the living-room window, with one hand on the glass, standing up on the back of the couch, watching us leave. Jay, Jana’s husband, was behind her. I could see him speaking to Sloane, explaining what was happening. Uncle Jay, now the adult in charge, was rolling out their plan for the day. Probably something about the zoo. But Sloane didn’t move, just stood at the window, big eyes looking out at me, as Turner swore and finally jiggled the vehicle into gear.\u003cbr\u003e\u003cbr\u003eI waved hard at Sloane: \u003ci\u003eBye-bye! Bye-bye! We’re going!\u003c\/i\u003e—smiling big on purpose, pretending away the meconium on the floor when my water broke, ignoring the hurry. My girl and I looked at each other through two sheets of glass and across fence and grass. I saw myself there, in her, as she looked right back at me.\u003cbr\u003e\u003cbr\u003e\u003ci\u003eEverything is going to change today, yes\u003c\/i\u003e, I wanted to tell her. \u003ci\u003eBut this  is  our  golden  life.  This  will  be  good. \u003c\/i\u003eTo  her  and  to  myself,  a prayer, a susurration of wings trying to take flight, a gear belt trying to catch: \u003ci\u003eThis will be good.\u003cbr\u003e\u003cbr\u003e\u003c\/i\u003eWe  drove  the  back  way,  out  the  old  road,  and  inside  another contraction I could hear myself moaning. Then my leg was cramping at the hip but there was no room to stretch. Turner went through a light on Blackfoot so red that everyone at the intersection knew our car contained a woman in labour. “I would’ve done that, too. Good job, Turner,” Jana said. They kept reassuring each other over the din of my moos and the flaps of my hands, \u003ci\u003eShut up shut up jesus christ you two, fucking shuddup.\u003c\/i\u003e\u003cbr\u003e\u003cbr\u003eWhen we arrived at the hospital, Jana helped me to the elevators while Turner parked the car. Then the ride up, and standing at the desk  in  the  intake  room,  the  nurse  going  slow  and  making  sure, because that’s triage. Another woman behind a curtain off the hallway was calling out, “Allahhhh, Allahhhh.” Between contractions I put my palm down hard on the counter and said to the nurse through my hair, \u003ci\u003eLet’s talk about pain management right now.\u003c\/i\u003e\u003cbr\u003e\u003cbr\u003eThen  a  delivery  room,  big  and  surgical,  no  windows  or  wallpaper. No time for an epidural to kick in, they said. This baby was coming fast and now, and I hollered loud loud very loud. A nurse told me to shush because it wouldn’t help to yell. She stepped back quick and got busy in another spot because I was about to jut my soccer knee into her jaw. Nurses know these things, somehow. But Jana was perfect, Teflon, knew all the staff’s names immediately, her gift alight, my beloved cousin keeping the room awake to me, this animal on the bed being torn in half.\u003cbr\u003e\u003cbr\u003eTurner held my hand, putting his head down during the contractions, petting my hair while I clutched the bed like it was a crashing plane. Jana said my vagina opened then, like a sea creature unfurling. The baby emerged, head coming slowly as the foldy bits of me went wider and wider, and then one shoulder emerged and the rest of the baby came all at once, \u003ci\u003eplop\u003c\/i\u003e.A Memoir of Special-Needs Parenting","brand":"Vintage Canada","offers":[{"title":"Default Title","offer_id":46300614656229,"sku":"NP9780735278189","price":17.0,"currency_code":"USD","in_stock":false}],"thumbnail_url":"\/\/cdn.shopify.com\/s\/files\/1\/1842\/7735\/files\/9780735278189.jpg?v=1767733361","url":"https:\/\/k12savings.com\/es\/products\/my-own-blood-isbn-9780735278189","provider":"K12savings","version":"1.0","type":"link"}