Writing with Grace: A Journey Beyond Down Syndrome
by Judy McFarlane
In 2006, Judy McFarlane, an aspiring writer herself, was asked by a friend if she would help a young woman with Down syndrome write a book. “I always dream to be a famous writer,” twenty-three year old Grace Chen had written in her notebook.
Read more here.
One Good Year: A Mother and Daughter’s Educational Adventure
by Laura Brodie
I was eager to read this memoir about homeschooling, being that I have recently waded into the homeschooling waters myself.
Ten years ago, Laura Brodie decided to pull her ten-year old daughter, Julia, from public school in order to homeschool her. The decision was made after much contemplation, and was based on Julia’s social, academic, and emotional difficulties with what seemed to be the institutionalized school setting itself. A free spirit who related to animals better than humans, who bristled at the confinement of school, and whose mind tended to withdraw and wander to such an extent that focusing on schoolwork was a real problem, Laura decided to give her daughter a respite for her fifth grade year. She hoped that a change of scenery for a year would give Julia a chance to regroup, refuel, and prepare for middle school.
There were certainly things in Brodie’s contemplation of homeschooling that I could relate to.
“Every child has a misery quotient, the line at which mere whining turns into real unhappiness . . . . And there’s nothing like homework to squash a child’s joy. In Julia’s mind, homework was the shadow haunting every day, the shapeless dread that grew larger with each passing year.”
This very much sums up my decision to pull my own daughter from public school in order to homeschool her; the misery school was causing her wasn’t worth whatever benefits she was supposedly getting from the experience, and I finally decided to take matters into my own hands in the hope that I could turn things around for her.
I didn’t get very far into the book, however, before I found myself irritated with the author. She scoffs at the propensity of parents to “grasp at straws of genius” in their children, but seems oblivious to her own tendency to do the same. All three of her daughters are above average, apparently – at least in the author’s eyes.
“Clearly, Julia had a unique intelligence churning inside her head . . .”
“I never did worry very much about Rachel, largely because of her intellectual gifts . . .”
And although I can’t locate the quote now, I believe her other daughter, Kathryn, was deemed “bored” with the academic aspect of school because she was so bright.
And, of course, Julia is a better violinist than any of her peers taking violin lessons.
This, too, rankled:
“The thought that in forty-nine states any parent who’d scraped through high school with a D average could then teach high school to their own children struck me as setting the bar very low.”
(As if letter grades are the only – or even the best – indication of ability and intelligence; as if there aren’t a million factors that might play into low grades in high school – from depression, to poverty, to various traumas, to illness, to instability of family life, and the list goes on and on – none of which are indicative of one’s ability to teach one’s own children. This struck me as appallingly narrow-minded, and even elitist. The author’s elitism continued to bother me; a Harvard graduate with a Ph.D., she clearly saw herself as more qualified to homeschool than the “average” parent, and had no qualms throwing around terms like “idiot” and “spelling moron,” and even calling her daughter a “dumbass” in a fit of temper – which she admittedly regretted, but, it seemed to me, more because name-calling isn’t nice and not because her terminology is disparaging to certain sectors of the population. There was also a remark by her husband about the stigma of being held back a grade: “Being held back is one step above wearing a helmet.”)
It seemed to me that trouble started brewing as soon as Brodie and her daughter began that year of homeschooling. When she describes how, “She and I had agreed that if her sisters were going to attend school from 8:30 to 3:00 every day, she would follow a similar routine . . . For the sake of sibling equality, we would find activities to fill six and a half hours each day,” it struck me how oblivious she seemed to the utter arbitrariness of a six-and-a-half hour school day, and the fact that much of that time is spent on classroom management and paper shuffling in “regular” school, and not on actual learning. And what about meeting each child’s individual needs? If she was going to base their school days on “sibling equality,” it seemed to me something important would be lost – namely, the meeting of Julia’s unique needs.
From the very beginning, Brodie sets stringent expectations for Julia, and from almost the beginning, tempers flare and mother and daughter clash again and again. I wanted so badly to see Brodie just stop and take a deep breath and change tack – and eventually she does, sort of, but not until the spring when their year together is already drawing to a close.
I don’t know . . . I know myself to be an anal-retentive control freak, but Brodie made me feel like a lamb. In the end, I don’t think that their year of homeschooling was any sort of “respite” for Julia. Brodie acknowledges this when she says,
“Still, part of my goal in homeschooling had been to reduce Julia’s misery, and it seemed that over the past few months I had only managed to give her misery a new name. I had granted her a break from traditional schooling, but not a respite from oppressive expectations.”
***
“In the end, our version of homeschooling had not escaped the worst aspects of school: the pressures of daily work, the crush of high expectations.”
Ten years later, I wonder what Julia would say about her homeschooling experience; I wonder how she feels that it benefited her, how it impacted her return to public school through her completion of high school, and how she feels it affected her relationship with her mother.
Brodie knows how to write (she’s an English Professor, after all), and thus her book is very readable, though I didn’t find it very relatable. She makes a lot of good points:
On conventional school –
“The division of children’s attention into arbitrary time slots is an artifice established for the convenience of schools, and is not designed to match the development of the human brain.”
On motherhood and anger –
“There’s plenty of anger in American society, and some of it might require therapy, but if all moms had to consult a psychologist every time they blew their tops, most U.S. households would be bankrupt . . . Mothers were supposed to be endlessly loving and encouraging. We were supposed to resemble Carol Brady or Shirley Partridge or June Cleaver, unfailingly good humored in the face of enormous exasperation. Now, in the new millennium, I find those saccharine maternal stereotypes to be as unhealthy as Barbie’s grotesquely arched and tiptoed body.”
Still, the writing and the author seem to lack a measure of warmth, and that kept me at arm’s length.
Ultimately, I thought the title of this book to be misleading, because it doesn’t seem like their year of homeschooling was good; in the end, I see it as more a cautionary tale than anything else.
The North Side of Down: A True Story of Two Sisters
by Nancy Bailey and Amanda Bailey
Memoirs written by parents about raising children with Down syndrome are not hard to come by. This memoir offers a unique perspective, as it’s written by a sibling rather than a parent, and it centers around an adult with Down syndrome rather than the usual stories about babies and kids with Down syndrome . . .
Read more here.
Drunk Mom: A Memoir
by Jowita Bydlowska
I was contacted by the author’s publicist a few months back with a request that I read and review this book, a memoir of alcoholism. “Sure,” I said. “Send me the book.” The book arrived in the mail, and it sat on my night table, merged with the pile of other to-read books on my night table. It took awhile for me to get to it, partly because that to-read pile never, ever shrinks, and partly because I sort of dreaded reading a memoir about alcoholism because alcoholism has profoundly impacted my own life – I knew this book would strike some painful nerves for me.
That Bydlowska, a Polish transplant to Canada as a teen, had a drinking problem was not news to her. She had confronted her alcoholism in her twenties and achieved sobriety through Alcoholics Anonymous for a number of years. Then at her best friend’s bachelorette party, the bartender asks her “Just soda?” when she orders her usual non-alcoholic drink, and suddenly, her defenses against alcohol evaporate in an instant. So begins her relapse. Shortly after, she discovers she is pregnant – the morning after a drunken binge – and manages to stay mostly sober for the duration of her pregnancy. But when her son is born, Bydlowska quickly descends into full-blown alcoholism – and it isn’t pretty.
On these pages she recounts the horrors of experiencing blackouts on a regular basis – of coming to with mysterious bruises and injuries and no recollection of how they occurred, of giant blank spots in her memory, of hiding bottles of vodka in her baby’s diaper bag, of her “mental map” of liquor stores, of drinking until passing out while caring for her son, of researching how poisoned her breast milk was after indulging again and again – and of the lies she repeatedly told her
boyfriend, her friends, and most of all, herself. It is a sad tale of an addict’s capacity for delusion and rationalization.
As she dissolves into full-blown alcoholism once again, she throws frequent barbs at AA. She attempts a “harm reduction” group, which rejects the label of “alcoholic” and attempts to teach moderation in drinking. She goes into inpatient rehab when her son is less than a year old. She makes deals with herself about her drinking. She makes promises. Nothing, of course, works. All the while, I’m reading, often with my fists clenched, thinking, “You stupid bitch. You pathetic loser.” Because, you see, I’ve had too many alcoholics in my life, and my sympathies tend to lean towards those around the addict, and less towards the addict who is wreaking hell on everyone around them. And yet, I was secretly rooting for her. I couldn’t help it. When finally, “limping on my broken toe, I march all the way across town to an AA meeting,” I pumped my fist in the air, going, “Yes!” with tears in my eyes.
Obviously this book will stay with me. Bydlowska is a gifted writer, and though the subject matter is not pleasant, she writes with clarity and utter honesty, with a thread of dark humor running through the whole thing. Ultimately, this is a story of hope and possibility. I hope it acquires a huge readership.
You can find out more about Jowita Bydlowska here.
Waking Up White, and Finding Myself in the Story of Race
by Debby Irving
I was intrigued by the synopsis of this non-fiction book and jumped at the chance to review it for TLC Book Tours.
In recent years, I’ve found myself becoming ever more conscious of classism and the accompanying attitudes of condescension towards those not belonging to the “desirable” class. It all hits me in a somewhat raw place because although in my adulthood I’ve joined the ranks of the upper-middle class, I always feel like something of an outsider because my roots and background are decidedly lower-middle class, and I’m very conscious of the great degree to which the class ranking most of us end up with has to do with advantages and disadvantages we are born into rather than “earn.”
“I’ve often heard people debate the entangled relationship between race and class. ‘Which one is the real issue?’ people ask. ‘Is it race or is it class?’ I’ve wondered myself how my socioeconomic advantage versus my skin color advantage shaped my life and skewed my worldview. I’ve come to believe it’s not an either/or issue. Both are real, and both matter. Trying to determine which one is the ‘real’ issue does a disservice to both. Concluding class is the real issue would give me permission to avoid thinking about race. Similarly, assuming race is the more significant issue overlooks the complications faced by white people caught in a vicious cycle of poverty. Both can trap people in a kind of second-class citizenship. If you can’t get the education you need to get a job to pay for healthy food, medical care, transportation, and a home in a neighborhood with good schools, then you can’t educate your children in a school that will prepare them for a job that will . . . and so on. Any cycle that traps someone in a state of perpetual disadvantage is the real issue for the person experiencing it.
“And yet, class and race are inextricably linked. Because class has long been easier for me to understand than race, this book focuses on the more elusive role skin color has played in my life. In grappling with whiteness, I’ve tried as much as possible to tease out and examine the race factor.”
In Waking Up White, Debby Irving recounts her odyssey to delve into issues of race that over the course of her life impacted relationships and her worldview in ways that she wasn’t able to understand until she began to actively learn about race – including whiteness. Having grown up in an affluent world populated almost entirely by white people, Irving grew up with the belief, like many people, that success in life depends solely on one’s own merit and determination, and the opportunities available in America are available to everyone. One of her first wake up calls was when she discovered that her father, who had fought in WWII, was able to buy his first home and attend law school courtesy of the GI Bill, but that the vast majority of black men who fought in WWII were denied the benefits of the GI Bill, and that in the post WWII era as housing developments exploded across the nation, neighborhoods were “redlined,” preventing people of color from moving into white neighborhoods, thereby virtually guaranteeing a cycle of more affluent neighborhoods being populated by whites and poorer neighborhoods by blacks, Hispanics, and other non-white minorities. Although the practice of “redlining” may no longer exist, the cycle certainly still continues today, with the vast majority of middle-class, upper-middle class, and affluent neighborhoods across the country being populated mostly by whites, and lower-middle class and poor neighborhoods by non-white minorities. And then we have the audacity to make moral judgments about the people who populate each type of neighborhood.
“White has long stood for normal and better, while black and brown have been considered different and inferior. Social value isn’t just a matter of feeling as if one belongs or doesn’t; it affects one’s access to housing, education, and jobs, the building blocks necessary to access the great American promise – class mobility.”
Irvine acknowledges that for the longest time, she believed as many of us do – that “racism” means being openly intolerant or hostile concerning those of different races. Most of us do not believe ourselves to be racist and would be indignant at the suggestion that we might be, but the truth is that whether we buy into and/or perpetuate stereotypes, or hold some nebulous belief that “they” would be better off if they could just be more like “us,” most of us are racist in one way or another, to varying degrees. Perhaps the most insidious form of racism is failing to recognize and acknowledge white privilege.
“My ancestors did sacrifice and work hard, and I am a diligent worker. But no longer could I deny that my life has been borne on the wings of whiteness. I’ve had an unfair advantage since before I was born. Just as time has compounded disadvantages for people living on the downside of systemic racism, it has compounded the advantages I and other white people enjoy. My life is built on family members able to get citizenship status without a fight, land grants for free, GI Bill benefits, low-rate loans, good education, and solid health care. Each generation has set up the starting point for the next, perpetuating the illusion that white people are more successful, not beneficiaries of an inequitable system.”
“Discrimination and privilege are the flip sides of the same coin. What must make it so infuriating for people of color is the double whammy that white folks, unaware of their skin color advantage, pose: To really get racism, a white person must get both pieces. It’s not enough to feel empathy towards people on the downside; white people must also see themselves on the upside to understand that discrimination results from privilege. You can’t have one without the other . Like a seesaw, the upside and downside are joined together.”
There are really so many quotes I could pull from this book; I was dog-earing pages and highlighting passages from beginning to end. Extremely well-written, thought-provoking, and eye-opening, I want all of my white friends to read it. I want my kids to read it at some point. I think it’s a book that needs to be read, and a conversation that needs to be had, by every American.
To read more about Debby Irving and race, check out her website: debbyirving.com.
Know the Night: A Memoir of Survival in the Small Hours
by Maria Mutch
This debut memoir is Mutch’s account of a two-year period during which her oldest son Gabriel, from age eleven to thirteen, didn’t sleep much, and as a result, neither did she.
This book stands apart from other parental memoirs of disability on many fronts. Far from being a hand-wringing rant, or even a tale of coming to terms, Know the Night is deeply contemplative, and reading it felt a little like being allowed into a quiet, private chamber. During the chronic night wakings, as she staggered through days of mind-numbing sleep deprivation, Mutch became intimately acquainted not only with her son, but with the night itself, in all it’s vastness and mystery.
“I tend to think that if he spoke, the night, too, would be different. The spell broken. Night would seem cold and clean and beautiful again. I have stood on the lawn in November wearing five layers of clothes to watch the Leonid meteor showers, or bathe my face in moonlight, or simply to see how immense the sky is and experience that twinge of becoming tiny in its indifferent embrace as it twirls unstoppably. I’ve witnessed aurora borealis, too, when I was twenty-one and floating at night on an Ontario lake in a small rowboat. I slipped over the side to swim in black water, drifted on my back, the dark rim of pines seeming very close. Above me drifted the smudged galaxy, and Leo, Hercules, and Cassiopeia. I floated there, felt myself being erased in the lake’s black ink. And there it was, a brilliant green rolling over the Earth’s magnetic arc, one stream after another. And along with it, a physical presence, a silence, enveloping and dark and honed.”
Born with Down syndrome and later diagnosed with autism, Gabriel began developing a vocabulary as a toddler, but had lost all of his speech by the age of six. During those sleepless nights, Mutch pondered Gabriel’s absence of speech and discovered that there are many languages that are not verbally spoken, that communication comes in surprising forms, including silence, which she observes not only in her son, but in the story of Thelonious Monk being detained by police in the 1950s, and in the frozen desolation of Antarctica.
Jazz and the Antarctic both play major roles in Mutch’s memoir. Jazz is a refuge for Gabriel, and a language he understands and loses himself in. Mutch, clearly a knowledgeable fan herself, plays jazz for Gabriel at home, and they are such regulars at local jazz clubs that several of Gabe’s birthday parties are held in one or another.
Interspersed with Mutch’s recollections of their sleepless nights and her contemplation of jazz is also the story of Admiral Richard Byrd‘s expedition to Antarctica in the 1930s. Mutch read Byrd’s account of his expedition, which included five months of utter solitude living in a hut and barely escaping with his life, during the period of Gabriel’s sleeplessness. Byrd’s isolation and harrowing polar survival struck a chord with Mutch as she navigated nights of isolation and harrowing survival of a different kind; it’s an interesting parallel and juxtaposition.
In the end, this memoir lacks the usual heart wrenching, tear-jerking, and even soapbox-stomping which makes it stand apart. Although there is a patina of melancholy, her telling of “survival in the small hours” during Gabriel’s prolonged period of wakefulness reads like a meditative odyssey in search of a deeper understanding of her son.
Her prose is gorgeous and begs to be savored. As I read, I folded down the corners of many pages because there were so many passages I wanted to reread just to let the words roll over me.
With or Without You: A Memoir
by Domenica Ruta
Here is yet another memoir about addiction and destructive love – this time between a mother and daughter, the author being the daughter.
Ruta grew up in Danvers, a town outside of Boston. The only child of a drug addicted single mother who got pregnant at the age of twenty, already well down the road of addiction, Ruta’s mother claimed to have loved her daughter so much that she immediately got clean and sober the moment she discovered herself pregnant. Whether she actually stayed clean for the duration of her pregnancy is unknown, but she was back in full swing popping pills and snorting coke before her daughter was out of diapers. Some of Ruta’s earliest memories are of syringes, blackened spoons, straws, and dinner plates with remnants of white powder clinging to them scattered casually about their run-down house. It wasn’t long before Ruta dipped her toes into the cesspool of drug abuse herself – at her mother’s urging; Ruta popped her first Oxycontin at the age of ten. By the time she was midway through high school, she was snorting “Oscars,” dropping acid, smoking copious amounts of weed and drinking copious amounts of alcohol. Through all of this, Ruta and her mother teetered on a seesaw of love and hate; theirs was a classic toxic relationship.
Somehow through all of this, Ruta managed to do very well in school and earned a scholarship first to a boarding school, and then to a small college in Ohio. She continued to spiral out of control with her addiction, however, and involved herself in several dead-end romantic relationships. Her mother became more and more an albatross around her neck, and finally, Ruta cuts all ties with her mother – a difficult and painful, but utterly necessary undertaking.
Finally, Ruta is ready to face her own addiction – and the pain and resentment she’s carried around her whole life at her mother’s neglect, trashy life, and failure to protect her from being raped repeatedly as a child by an uncle – that he was a pedophile and had a “thing” for Ruta was an open secret in the family. She joins a twelve-step program, and after a few false starts and relapses, she finds herself clean and sober, hopefully for good.
Ruta is a gifted writer, and her descriptions and recounting are so vivid, I felt like I could picture it all in my mind’s eye. A lot of her story resonates with me – the toxic mother who had to be excised, the filthy childhood house, the feelings of loneliness, and addiction – though not my own. I found myself feeling angry as I read; although I could relate to the author herself, I also felt disgusted at her spiral into addiction. I guess I’ve just had too many addicts in my own life to dredge up much compassion.
Very readable, but I wonder why we haven’t grown tired of these types of stories. Shitty childhoods and addictions – the market is flooded with these memoirs. Very well-written, but nothing new.
Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion
by Sandra Assimotos McElwee
Unlike the countless other memoirs written and published about raising a child with Down syndrome – woman gives birth; woman learns baby has Down syndrome; woman weeps, rails, and wrings hands; woman discovers acceptance and joy in having a child with Down syndrome (I’m not poking fun – this is very much my own story) – Who’s the Slow Learner is a chronicle of the author’s son’s schooling from preschool through high school graduation. This is a sorely needed book in the landscape of disability and education.
Sandra McElwee recounts her determination to see her son Sean, an only child, fully included in general education classrooms. A tenacious advocate, McElwee found what a lot of us parents are finding: that inclusion is much easier to accomplish in elementary school than it is in junior high and high school. From kindergarten through sixth grade, Sean was accepted in his neighborhood public school, and battles for inclusion on his behalf were minimal. The benefits of inclusion were clear: self-esteem, peer modeling, a sense of community and belonging, and far more learning opportunities for Sean, and lessons in compassion, tolerance, and embracing diversity for the other kids and the teachers.
Once Sean entered seventh grade, however, it all changed. He entered a hostile environment of blatant prejudice and exclusion. It took such a toll on Sean’s behavior and self-esteem that his mother finagled for him to skip eighth grade just so he wouldn’t have to return to such an unwelcoming atmosphere for a second year. In high school Sean slowly found his footing and flourished in making a place for himself in the social structure of high school, but acceptance by the teaching staff was still largely difficult and often hostile.
I read this book with great interest in anticipation of my own son’s IEP meeting that would determine his kindergarten placement for the upcoming school year. We’ve already had such terrible battles with our school district concerning our son who has Down syndrome – it’s been emotionally and financially draining, to say the least. I was especially interested because the McElwees are fairly local to me, although not in the same school district, so I thought it would give me a pretty good glimpse of what the future might hold for us regarding Finn’s schooling.
Like I said, this book is different from all the other personal stories of Down syndrome out there, and it fills a gap in the Down syndrome/disability literary landscape that has very much needed filling.
However.
My only criticism – and it’s a big one – is that the writing is very much in need of professional editing. This is a self-published book, and unfortunately, it shows. There are too many inspirational quotes (and too many faith-based passages which tend to alienate readers who don’t share the same beliefs), too many typos, not enough formatting, and not enough polish. It really needs a professional hand – especially for the price (ten bucks for Kindle and eighteen bucks for paperback). I think this book fills such a needed space, but would have so much more impact – on parents and educators – with a major editorial overhaul.
The Anti-Romantic Child: A Story of Unexpected Joy
by Priscilla Gilman
Where to start?
I honestly can’t decide if I loved this book or disliked it. I suppose both.
In this memoir, Gilman tells of her idyllic childhood and the pain that was wrought by her parents’ split when she was ten. Always a pleaser, she spent much of the next couple of decades trying to fulfill the wishes and expectations placed on her by her family and teachers, pursuing a life of academia. Through it all, she pines for the romanticized version of her early childhood and longs to replicate it with children of her own.
When her first child is born, he is different from what she had expected from the beginning: he is “floppy” and not the cuddly child she had envisioned. In fact, he resists most forms of physical contact and in many ways appears an island. As Benj progresses into toddlerhood, he remains distant, he is clumsy and slow to meet gross motor milestones, and is plagued by inexplicable anxieties and tics. At the same time, he begins reading fluently by age two and shows a remarkable capacity for memorization, and an obsession with letters, numbers, and lining up and ordering things.
“Part of what made my dawning realizations about Benj so disconcerting and devastating was that I had thought I knew him so well. After the initial sense of alienation and despite my continued sense of a fundamental difference or distance between us, Benj, with all his quirks, had become utterly familiar to me. There had been no one more familiar to me than my son. I had considered myself totally tuned in to his needs and had accepted him on his own terms. In fact, I had embraced him for what he was, because I still wanted to be the devoted mother of the romantic child I’d imagined; even if (or especially because) the child didn’t match the ideal, my love for him would. But now I wondered: was this acceptance instead based on a ‘fond illusion of my heart’ (Wordsworth, ‘Peele Castle’)? Was it a kind of denial, a refusal to help or even accurately perceive him? To question your grasp of your child is to suffer a great loss.”
Every aspect of Gilman’s life is informed by the poetry of William Wordsworth, of which she is both a student and a professor, and her book is liberally peppered with Wordsworth poetry that acted as both knife and balm to her mother’s heart.
Around the age of two and a half, Benj’s issues become troubling enough that Gilman decides to begin the process of having him evaluated. Certain aspects of her story resonated so strongly with me with regard to my own child who has Down syndrome:
“Now, with the outside world’s judgments and prescriptions infecting our family, with the knowledge that we would have to have him formally evaluated in clinical settings, our peaceful happy private life, a life in which we – not teachers or doctors or therapists – defined his value and his identity, was gone. Benj was still his same sweet self, but my entire sense of him, of our family, of his and our future had changed.”
I could very much relate to that feeling of loss relating to allowing the sterile, clinical world intrude on our family to assess our child and break him down into scores and numbers and deficiencies.
Benj is diagnosed with hyperlexia (which is like the opposite of dyslexia) and a myriad of delays, sensory issues, and obsessive-compulsivity, and so begins his entrance into special schooling and intensive therapies. Indeed, nearly their entire lives seem to be taken up with various therapies for young Benj. Meanwhile, Gilman leaves academia behind and her fairy-tale marriage breaks up, due in large part to a polarization in her and her husband’s feelings about their son’s issues.
Gilman’s prose is beautiful and from the heart; she is a gifted writer and tells her story vividly. I think what I found frustrating – as a parent of a child with special needs myself – was what I perceive as a juxtaposition, or maybe just waffling, between Gilman’s determination to accept her son and value him exactly as he is, rejecting notions of achievement-based valuing of human beings, and a strong sense of ableism and very much wanting to normalize Benj as much as possible, by relentlessly plunging him into therapy after therapy aimed at changing him. Perhaps, however, her summing up of her feelings explains it best:
“Wordsworth has strengthened my commitment to simultaneously helping Benj integrate into society and honoring his differences. Our therapeutic efforts have been, of course, designed to help Benj be more ‘romantic’: more spontaneous, imaginative, intrepid, playful, connected to others. But even while striving so hard to help Benj become more romantic, I always wanted to remember that Benj’s antiromantic traits are valuable and wonderful and an essential part of who he is. They are strengths and gifts. I never want them denigrated or dismissed as ‘splinter skills.’ Both my reading of Wordsworth and my experience with Benj have taught me the danger of the very idea of ‘normalcy.’ I will always resist mightily any orientation or approach that sees Benj as a problem or somehow ‘broken’ rather than as simply and profoundly himself.”
It was perplexing to me that her son never received a formal diagnosis; so much of what she describes seems like autism, but that may admittedly be my own misconceptions and assumptions. I wondered if it was a form of denial on her part, or a manifestation of the ableism I perceived in her. And yet, she explains very eloquently,
“Despite numerous evaluations over the past seven years by developmental pediatricians, psychologists, speech and language therapists, occupational therapists, and psychiatrists, Benj has never received an official label or diagnosis. He clearly has shades of obsessive-compulsive disorder, and could be grouped under the headings of sensory-integration disorder and social-pragmatic language disorder; now, as he gets older, I often describe him as ‘borderline Asperger’s,’ usually as a kind of shorthand when I need to succinctly explain why he’s in a special school. I’ve always been ambivalent about the idea of labels. They’re undeniably useful for securing the much-needed therapies and special services, but I’ve often wondered how a label would be helpful in understanding Benj. Would a label make people more sympathetic to him? Or would it get in the way of appreciating the complex, intricate person Benj is? How much detail, nuance, subtlety do we lose when we slap labels on people, and especially on still-developing kids? Reducing Benj to a label would me the loss of mystery, romance, respect for the idea of identity as something that can never be precisely defined of fully known or mastered.”
But there are children like my own who are born with a recognizable, inescapable diagnosis or label; and so, while I fully appreciate Gilman’s hesitancy at using labels, I can’t help but also recoil a bit at her feeling that labels are reductive. In reality, sometimes they can’t be avoided, for all of their pitfalls.
This is a very different sort of memoir that I’ve read before, generally and pertaining to having a child with special needs, in large part because it is so heavily informed by the author’s passion for literature. Despite my misgivings, it has definitely given me pause to consider how other parents approach disability.
Ghostbelly: a memoir
by Elizabeth Heineman
Every once in a while, a book falls into my hands that rips my heart out a little, and keeps me awake at night.
“I think we ought to read only the kind of books that wound or stab us. If the book we’re reading doesn’t wake us up with a blow to the head, what are we reading for? So that it will make us happy, as you write? Good Lord, we would be happy precisely if we had no books, and the kind of books that make us happy are the kind we could write ourselves if we had to. But we need books that affect us like a disaster, that grieve us deeply, like the death of someone we loved more than ourselves, like being banished into forests far from everyone, like a suicide. A book must be the axe for the frozen sea within us. That is my belief.” – Franz Kafka
Ghostbelly is one such book.
Elizabeth Heineman, or Lisa to her friends, has lived an unconventional life, making unconventional choices. So, it’s not surprising to those who know her when she falls in love anew in her mid-forties and decides to get pregnant at the age of 45. What might be surprising, however, is that she chooses to have a home birth, eschewing the barrage of unneccessary medical interventions routinely present in the medical model of maternity care and childbirth. It is not a decision Lisa makes lightly; she agonizes over it, researches it, and ultimately chooses a home birth attended by a certified nurse midwife because Lisa believes in evidence-based practices, and nobody she consults with can offer her any concrete medical reason that she would not be a good candidate for an out-of-hospital birth. Indeed, regardless of her “advanced age,” she’s extremely healthy and fit and is deemed “low risk” by the hospital midwives she sees through a good part of her pregnancy, as well as her family practice doctor.
After an easy, happy, uneventful pregnancy that continues past her due date, Lisa goes into labor one November evening in 2008. Something goes terribly wrong during her labor, however, and her longed-for baby, nicknamed Thor, is stillborn.
What ensues is the story of a woman whose love for the child she never saw draw breath is inseparable from the gut-wrenching grief she inhabits over her loss of Thor. Making yet more unconventional choices, Lisa demands more than the half-hour allotted time with her dead baby’s body that the medical examiner’s arbitrary protocol allows; she and her partner, Glenn, instead spend six hours with Thor that first morning in the hospital, cradling him, lovingly examining him from head to toe, rocking him, singing to him, and talking to him – as loving parents do with their new babies.
“I see Thor. I feel him. I smell him. They have handed him to me in a blanket, and he is heavy in my arms. I rock him and smile at him and sing to him and kiss him and inhale him.
“Glenn watches me and cannot understand: I seem happy.
“He is right. I am happy, because in this strange new life I have just begun, the life of the mother of a dead child, this is what counts as happiness: I have my baby, I am cradling him and talking to him, and they will not take him away in half an hour, and so I am happy.”
***
“This is what I want to do in those six hours. To take that moment, in which Thor will not grow six hours older, and inhabit it fully. To fully absorb Thor, because it will be our only chance.
“And because this is so important, other things can wait. Like crying. Like thinking about Thor’s absence. I will have a lifetime to explore Thor’s absence, every inch of it; to acquaint all my senses with it, to inhabit it. Any time we spend crying now, bewailing his death, will be time lost to things like singing to him, touching him, things we only have a few hours to do. Thor’s absence will not last just a moment, not even a stretched-out moment. It will occupy time. First he will be dead a day, then a week, then a month, then a year. I will have the rest of my life to explore it, and its exploration will require the rest of my life. But the time to explore Thor’s absence is not now. Now is the time to explore Thor’s presence.”
The next day, after an autopsy is performed, Lisa and Glenn visit the funeral home where Thor rests until his burial is carried out. They are surprised when the funeral director talks about Thor as if he matters, as if he were a person, a real baby, and not just a corpse. “Uncle Mike” as he becomes known to them, encourages them to visit Thor whenever they want, and even to take him home for visits, which they do.
Lisa, of course, agonizes over what went wrong after such a wonderful, low-risk pregnancy. Why did Thor die? She unflinchingly analyzes her choices and the events that led to Thor’s death. While she came to believe that Thor might not have died had she planned a hospital birth rather than a home birth, she does not condemn home birth or midwifery care as one might expect after such a catastrophic loss; rather, she condemns the alienation and isolation of home birth midwives in the U.S.; if home birth and home birth midwives were not placed on the fringe by society and the medical community, if midwives were treated as colleagues and invited to collaborate with doctors, it is likely that situations like Lisa’s wouldn’t arise.
“I believe Thor is the statistic for unnecessary death in an out-of-hospital setting.
“I believe someone else’s child is the statistic for unnecessary death in a hospital setting.
“I believe that a single unnecessary death during home birth prompts calls for abolition of out-of-hospital midwifery. I believe that hundreds of thousands of unnecessary deaths in hospitals prompt suggestions for voluntary reform. I believe the difference lies in the imbalance of power between hospitals and midwives, not the comparative level of risk of home birth versus hospital care.”
Lisa contacted me a few months ago and asked me to read and review her book (I have to say, I am so incredibly fortunate to have the opportunity to “meet” some wonderful authors this way; Theresa Shea and George Estreich also come to mind), and gave me a synopsis, so I knew going in what the gist of her memoir was. To be honest, I was a little scared to read it; I expected it to be morbid and maybe even macabre. It is decidedly neither morbid nor macabre, although it surely takes the reader out of a comfort zone. On a personal level, this book moved me in so many ways: aside from sharing a name with the author, we share religious views, and I, too, chose home birth (three times) and gave birth to a baby at an advanced age (44). I can’t help but feel a connection to Lisa and her story, though I’ve never lost a child.
Searingly honest, gripping, and articulately emotional, this is a story that needs to be told – and a story that needs to be read.
For more information about this author and her stunning memoir, check out ghostbelly.com.
turnthepagelisa.com 