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.
About the author
ASHLEY BRISTOWE has been a radio producer, development planner and a portrait and editorial photographer whose work has appeared around the world in print and online, from The Globe and Mail to Raygun to the South China Morning Post. In the 1980s she was the child star of ACCESS TV's Harriet's Magic Hats. She lives in Calgary with her family.
Excerpt: My Own Blood: A Memoir (by (author) Ashley Bristowe)
In 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 The Simpsons. 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).
Our 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 really do?”
I 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.
We 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.
When 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.
Then, 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.
That was the last independent, unrushed, unpanicked decision we made for years to come.
Now I have a special-needs child.
In real life I say, He was unexpectedly born disabled. Not unexpectedly born—we totally knew he was coming. But we didn’t know he’d be disabled.
There’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.
Did it work for you?
Here we go:
The 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.
“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.”
They 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.”
But Genetics kept at it. Months went by. Two more DNA tests, more specific, showed nothing.
Then they found it.
Our 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.
When 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.
A 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 does 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.
But 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.
Turner and I got tested, and we don’t have this deletion, and we’re not carriers. So our son’s deletion is considered de novo, 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.
And 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.”
When I said, “Huh” what? Does “huh” mean anything?, 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.”
At 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.”
Did 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.
We 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?”
I said no, and hung up.
Done and done, back to the pool.
And five months later, Alexander was born.
My 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.
Turner 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.
I waved hard at Sloane: Bye-bye! Bye-bye! We’re going!—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.
Everything is going to change today, yes, I wanted to tell her. But this is our golden life. This will be good. To her and to myself, a prayer, a susurration of wings trying to take flight, a gear belt trying to catch: This will be good.
We 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, Shut up shut up jesus christ you two, fucking shuddup.
When 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, Let’s talk about pain management right now.
Then 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.
Turner 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, plop.
“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 My Own Blood is that kind of book. You need to read it, as soon as possible.” —Ian Brown
“My Own Blood 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.” —Deepa Mehta
“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.” —Karen Connolly
“Written with spare, feisty, sparkling prose, My Own Blood 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.” —Gabor Maté, MD
“My Own Blood 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.” —Gill Deacon
“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.” —Sheila Heti
“Bristowe has blended courage, bluntness, humour and terrific writing in [My Own Blood].” —Edmonton Sun