Lastly, I prepared meticulously for an unmedicated birth. In the final months of pregnancy, I ended each hip-aching day by popping earbuds into my ears, closing my eyes, and listening to Hypnobabies, a natural-birthing program that guided me through self-hypnosis.
My baby will be born healthy and at the perfect time, a woman’s voice uttered as I descended into a dreamy soup of electronica chords and affirmations. My body is made to give birth nice and easy. I look forward to giving birth with happiness. My baby is developing normally and is healthy and strong. The words were supposed to become lodged into my subconscious. I see my bubble of peace around me at all times now. I focus on all going right…
After thirty-six hours of labor, the last five of which can best be described as an apocalypse at the very base of me, I pushed my baby out and into the warm waters of a hospital tub. My midwife dangled a slippery, bloody thing above me. Without my glasses my SuperBaby looked like a bean-shaped blur.
“What a little peanut!” the midwife cried. And that was the kindest thing any medical professional would say about my newborn’s body.
Abruptly, her tone changed. “Cut the cord!” she barked.
“But we were going to wait until the cord stops…” my husband said. Cutting a cord prematurely could rob SuperBaby of vital nutrients and…
“Cut it now!” the midwife commanded.
My husband snipped, and the midwife whisked the bean-shaped blur away.
I moved to a bed and prepared to birth the placenta. A nurse sat beside me. I asked, “Is my baby okay?”
She said nothing.
A few minutes later, the peanut was finally upon my chest. “She’s fine,” the midwife said. “Just small.”
There at last was the kid I’d made, this product of wheatgrass and hypnosis and free-range eggs. Her vernix-covered head was no larger than a grapefruit, fitting into the palm of my hand. Her black eyes stared up at me, alert and confused. My husband curled beside me and gazed at her in awe.
We named her Fiona. She was four pounds, twelve ounces. This was apparently an alarming size for a newborn. Over the next twenty-four hours, every medical professional who entered my room asked the same question: Why is this baby so small?
“Tone’s good,” a pediatrician said quizzically as he lifted her in the air to investigate her torso. He shrugged.
Too tired from my 36 hours of unmedicated natural easy comfortable excruciating childbirth, I didn’t concern myself.
I focus on all going right…
My baby is developing normally and is healthy and strong.
But after a shift change, when a new nurse entered my room (someone who hadn’t just seen me squeeze a person from my vagina without medication), she asked a question that felt like a slap: “Did you take drugs while pregnant?”
No, nurse, I wanted to say. I took superfoods. I took reiki. I took electronica chords and affirmations.
This is the moment when I realized perhaps I hadn’t made a SuperBaby after all. And this, looking back five years later, was a good failure, the very best of my many failures to date.
As a kid, I used to lie flat on my back at night and worry that the whirling ceiling fan directly over my bed would spin off and cut me. I confessed my fears to my mother and stepfather. I figured they’d reassure me that a ceiling fan would never do such a thing, that the bolts in the unit were made of X material and the fan itself was anchored with Y gadget and built to withstand Z weight and centrifugal force. Instead, they looked worriedly at one another. Then my mother said, “You know, if you believe things badly enough, you can make them true.”
My stepfather nodded. He was a chiropractor, and my mother worked as his assistant. Decades before Rhonda Byrne’s The Secret was published and purchased by 19 million people, my parents subscribed to the philosophy that thoughts make things. Whatever you want, you can get by thinking positively. If you aren’t getting what you want, you aren’t being a good enough steward of your mind.
When one of my family members became ill, we consulted Louise Hay’s little blue book, Heal Your Body: The Mental Causes for Physical Illnesses and the Metaphysical Way to Overcome Them. “Both the good in our lives and the dis-ease are the results of mental thought patterns that form our experiences,” Hay writes. In author photos, Hay has bouncy white hair brushed away from her high cheekbones. Her photos cast the glowing air of Cybil Shepherd in Moonlighting. “We’ve learned,” Hay writes, “that for every effect in our lives, there’s a thought-pattern that precedes and maintains it.” The bulk of Heal Your Life is a list of ailments in alphabetical order. You can find everything from hemorrhoids to tuberculosis to AIDS, and beside each ailment is an emotional cause.
Asthma: Smother love. Inability to breathe for one’s self. Feeling stifled. Suppressed crying.
Ingrown Toenail: Worry and guilt about your right to move forward.
My parents’ belief in the mind-body connection sometimes meant that they unintentionally blamed me when I caught colds and flus. For instance, I developed a case of sinusitis. Sinus Problems: Irritation to one person, someone close. Who was I annoyed with? Or I got bronchitis and had to take a week off from track practice. Lungs: The ability to take in life. Depression. Grief. Not feeling worthy of living life fully. What was wrong with me? Was I depressed?
It’s easy for me to poke fun at this now, but the associations were sometimes eerily on target. In the first weeks of college, I fell hard for a boy. I had my first kiss, thought he’d become my first boyfriend, then saw him kissing someone else a week later. I reacted by staying up too late and sleeping too little. A few weeks later I developed a high fever and tonsils big as golf balls.
Mononucleosis, Louise Hay writes. Anger at not receiving love and appreciation. No longer caring for the self.
I read this on the same childhood bed beneath the same childhood fan that had always, with the power of negative thinking, threatened to spin off. Sure, mononucleosis is caused by the Epstein-Barr Virus, a physical thing about 150 nanometers in diameter and composed of a double-stranded DNA that contains 85 genes. But according to Hay and co., if you have mono, you don’t just have the existence of the virus in your body. You have certain emotional and mental states that allow the virus to thrive.
Thus, mono is your fault. Rather, mono was my fault. Too ill to go back to school, I slept in my childhood bed for six weeks, ashamed.
Feel the light completely surrounding your body, as if you were in a cocoon, or halo of light. –Hypnobabies
If you flip Hay’s book to the “C” section, you will find an entry for cancer. Deep hurt. Longstanding resentment. You will find an entry for cysts. Running the old painful movie. Nursing hurts. You will find entries for coughs, cramps, corns, and Crohn’s.
You will not, however, find an entry for chromosomal deletions.
Sixteen years after I had recovered from mono, I had a three-month-old baby who was just seven pounds. At her check-up, a pediatrician noted this along with Fiona’s heart murmur, wide-set eyes, and sloppy way of breastfeeding. Fiona did not, as they say, “have a good latch.” In fact, trying to get Fiona to breastfeed had been nothing shy of hell, and she screamed at my nipple like it was that flaming eye that terrifies Tolkien hobbits. Three months into my parenting gig, I still used silicon “nipple shields”: cone-shaped torture devices for postpartum mothers in breastfeeding despair. “That’s not normal,” the doctor said.
The doctor suspected a syndrome of some kind. She ordered blood work.
When the diagnosis came back, I sat at a computer late into the night and entered the words Wolf-Hirschhorn Syndrome into Google. A grim picture returned.
Mortality rate is estimated at 34% in the first 2 years of life….
Intellectual disability ranges from mild to severe…
Most of the patients do not develop active speech…
The usual cause of death is a heart defect, aspiration pneumonia, infection, or seizure….
Seizures occur in 90% to 100% of children….
Some do learn to walk….
About 30% of children reach some autonomy with eating…
10% achieve sphincter control by day…
Wolf-Hirschhorn syndrome is a condition that affects many parts of the body.
There is no specific treatment.
When I looked up from the computer screen, I was not sitting on a gray Ikea couch in the beige living room of a house in Ohio. Up was now down, right was left, and I was groundless, freefalling. I was floating in the blackness of space.
If women don’t follow the rules, they risk damaging not only their children’s health but that of future generations. The list of possible consequences—from congenital deformity and cot death to delinquent children and mental problems—is dire. –“Planning for a Superbaby,” Celia Dodd, The Independent
The body is fixable. The body is perfectable, and if your body is not perfect, it’s your fault. Change your thinking. Improve your emotions. Take your vitamins and fix yourself. This was my upbringing.
I was thirty-two when I had Fiona. Some of my mind-body fundamentalism had worn away, in part because when I was twenty my stepfather had gotten cancer—a fist-sized melanoma tumor beneath his arm—and his New Age methods of positive thinking hadn’t healed him. A naturopath told him if he wanted to get well he had to forgive his mother, and he looked genuinely distraught when he said to my mom, “But hon. I have!” He was diagnosed in May and he died in October. With his death, I lost my father and my chiropractor and my champion. I also lost a religion I could no longer reconcile. These bodies were not remote control cars we could master with the switches in our hearts and minds. Trying to shape them with our thoughts and our diets was a foolhardy attempt to guard ourselves against pain.
But twelve years later, carrying a new life inside me triggered my old thinking. There it was: the belief that I was entirely responsible for wellness.
I suspect my old views were activated largely by the culture of pregnancy. Once our pee contains enough human chorionic gonadotropin to mark a plus sign on a stick, we women are advised on every single lifestyle choice. How much we should exercise. Too little won’t be effective; too much can be debilitating.* How we should position our bodies. Try not to stand for long periods. Sitting for long periods can be bad for your back. How often we should do Kegels. Doing them faithfully may help you avoid an episiotomy or a bad tear. What we should avoid: caffeine, deli meat, ibuprofen, alcohol, hot dogs, shark meat, swordfish, king mackerel, tilefish, cookie dough, cake batter, brie, raw sprouts, fresh-squeezed orange juice…. How we should eat at a restaurant. Order a green salad as a first course and ask for dressing on the side. How we should eat at an Italian restaurant. Avoid anything breaded. How we should eat at a Japanese restaurant. If you crave tempura, “steal” a few pieces from your dinner companion’s plate. Whether we can travel. Of course you will need your practitioner’s permission. Whether we should have sex. Think positive: making love is good physical preparation for labor and delivery. Whether we should try to teach our fetuses. Some researchers believe it is actually possible to stimulate the fetus prior to birth to produce, in a sense, a “superbaby.” How we should feel. Learn to relax. Many problems are aggravated by stress.
While I was pregnant with Fiona, I watched mothers around me strain equally hard for perfect pregnancies. During a trip to California, I stayed at the apartment of married friends who were out of town. Upon entering their home, I saw a note on the table, written by the husband. Please take your shoes off whenever you enter the door. Heavy metals found outside aren’t good for our developing baby’s brain. Another friend forced herself to huff and puff up and down her employer’s steps immediately after lunch because she’d been diagnosed with gestational diabetes and doctors told her if she exercised for twenty minutes after every meal, she’d stay off insulin. This same woman had lost her father a few months prior, and her mother blamed her gestational diabetes on grief. “You’re killing that baby!” her mom said.
It seemed that, once expectant mothers, women are supposed to become conduits of total safety. I now feel inner peace and serenity. The culture implies that we should become carriers of life that will not experience what life inevitably feels—pain. I will give birth easily, comfortably, and without complications. We are encouraged to avoid all that we can never prevent. I tell my feelings what to feel, and they do, and they feel very calm, confident, and at ease. We try to stop the growing body inside us from having what all bodies inherently have: vulnerability, that crack of a doorway through which our suffering creeps.
Week after week, my husband and I drove our very small baby into downtown Cincinnati for appointments at the children’s hospital. First we met with a young, redheaded geneticist who had a cherubic belly and cheeks. He showed me an image of chromosomes. Magnified 1,000 times, they looked like teensy broken bits of ramen noodles. I learned that my daughter was missing a top bit of her fourth ramen noodle. I learned that this bit had been missing in either the sperm or the egg that helped conceive her. It existed at her conception. It existed even before the dawn of her creation. It existed prior to my digestive enzymes and organic grocery bills. It existed in the darkness before the light.
“There’s nothing you could have done differently,” he said. “This syndrome appears across all cultures.” His remark was both a relief and a riddle. Really? I had a hard time believing him.
The geneticist recommended a series of tests to determine whether my baby’s body could do the various things people generally expect bodies to do. For instance, could she hear? Could she see? Could she swallow?
“Swallowing is a very complex process,” the geneticist said. He wanted to know, Was my daughter aspirating? Was she dying slowly by way of her own spit? If she was not, her life expectancy would jump significantly.
A few weeks later, a young doctor pulled out a thin black tube that looked like shoestring licorice. He threaded that tube up my four-month-old’s nose and down her throat, and she turned bright red and screamed. At the end of the tube was a camera, and a television in the examining room then broadcasted my daughter’s airway—a wet, pulsing red planet.
The doctor told me to try to nurse my infant. I held her seven-pound body to my chest as she thrashed, eventually getting her mouth around my silicon-encased nipple. She latched, and I felt her limbs relax. She sucked. The doctor and nurses turned to the television. I felt the heat of my girl against my body, felt the slipperiness made from sweat between us. I did not see what the doctor and nurses saw, which was breast milk traveling safely down my daughter’s esophagus and not into her airway.
“Looks good!” the young doctor said cheerily.
As we drove through Cincinnati that day, I marveled at the people along the sidewalk, amazed at their ability to walk and swallow at the same time, to live and thrive and not die by way of their own spit.
Go much deeper now, much deeper. –Hypnobabies.
My daughter had an echocardiogram to assess the severity of her heart murmur (it was mild); an ophthalmology exam, to check her eyes for abnormalities (they were fine); a thirty-minute EEG to determine if her brain wave patterns were normal (not quite); a developmental assessment to see if she was delayed (she was). She had a kidney ultrasound to see if her kidneys were normal (they were not) and two kidney function exams, to see if her kidneys worked okay (they did). During one of these exams, I pressed my face close to her body and gently sang Twinkle, Twinkle while a nurse repeatedly probed my daughter’s urethra, unable to insert a catheter. “I just… can’t… get it….” My baby’s face turned stop-sign red, and I, a woman who likes to please, who likes to go with the flow, told the nurse to stop. “Get someone else.”
During these months of medical tests, I bought a copy of Pema Chödrön’s When Things Fall Apart, because it felt like things very much had. I brought the slim beige book with me to the hospital. The Tibetan nun’s words were the anti-Louise-Hay. I read as Chödrön advised the opposite of daily affirmations.
Not, I feel safe. Instead: Things don’t really get solved. They come together and they fall apart.
Not, I am confident. I am relaxed and peaceful. I am in control. Instead: We don’t know anything. Let there be room for not knowing.
By eight months Fiona developed a love for clapping. At nine months she had her first grand mal seizure. At eleven months she rolled from front to back. At one year old she weighed twelve pounds. During that first year, her syndrome revealed itself to be simultaneously life-altering and, in some strange way, just fine. A new normal. Her medical issues were manageable. The problem, it became clear, was mine: I wanted her different. The daily prayer inside me was an impossible wish to scrounge the earth and find that missing bit of her fourth chromosome. I imagined it was buried among fossils in an ancient, surreal sand dune.
Abandoning hope is an affirmation, the beginning of the beginning. –Pema Chödrön, When Things Fall Apart
One month past her first birthday, my husband and I brought Fiona to a conference for people with her syndrome. We saw children who used walkers and children who ran past us. We saw adults who sat in wheelchairs and adults who scooted on their butts. We saw people who ate their breakfasts orally and people who received food through g-tubes. I had no idea which of these people would resemble my daughter in the future. Our one-year-old could not yet sit independently, was mostly bottle-fed, and looked like a typical three-month-old. In photos of this conference, my husband is holding her like a baby. Her black eyes have turned Tahoe blue, and she reaches toward his beard with a spread hand. At this Sheraton in Indiana, among a handful of other kids her age who also looked like babies, she was right at home.
Something powerful was born in me at this Indiana Sheraton, a disturbing realization: I’d always privileged an able body.
My baby will be born perfect.
I focus on all going right.
With my woo-woo belief that the mind could control the body, I’d pushed disability away. I’d done this by subscribing to the belief that disability always had an avoidable cause. I’d believed I could control the body because I could not stomach the truth: that the body is fragile, ephemeral. I had not realized this about myself. I had not realized this about my parents. I did not see our adamant devotion to vitamins and affirmations and organics as fear-based, as an attempt to control the uncontrollable. I also did not see it as political. I saw it as morally good. I was making a SuperHuman. What was wrong with that?
But at the Sheraton, in the floral carpeted conference hall, among these differently embodied people—a thirty-pound teenager with lustrous red hair who loved to finger Mardi Gras beads in her wheelchair; a woman who didn’t speak but wore a communication device around her neck and liked to grab strangers by the hand; a man in a wheelchair who mostly looked toward the ceiling but somehow managed to tease his younger sister—among my daughter’s peers, something about my former pursuit of a SuperBaby seemed very, very wrong.
Repeat to yourself (out loud if you can), “I am willing to release the pattern in my consciousness that has created this condition.” –Louise Hay, Heal Your Body
Here’s the thing. If you buy into a false narrative that the body is controllable, that illness can always be prevented, then by proxy you are left with a disturbing, damaging, erroneous conclusion: the belief that a person’s disability is their fault.
This blame is as old as the Bible. How did the blind man get like that? Jesus’ disciples ask. Was it he who sinned, or his parents? My New Age mind/body connection was just another way to force the lepers outside the town walls. Vulnerability cannot enter here. Mortality cannot enter here. It was another way to push my fears away from myself and onto someone else. If you are ill, you can fix it yourself. If you cannot fix it, then you are to blame. It was, I realize looking back, pseudo-spiritual eugenics.
So accustomed to blaming the cause of “dis-ease” on myself, I couldn’t relinquish the habit. I entered Fiona’s second year still harboring the deep-seated belief that I’d somehow fucked up. Maybe I should have waited a month before convincing my husband to try for a baby. Maybe if we’d waited a month, Fiona wouldn’t have Wolf-Hirschhorn syndrome. Or maybe by propping my hips up with a pillow after sex, I’d encouraged the wrong sperm to reach. But these avenues of thinking were futile because they all led hypothetically not only to a child who didn’t have Wolf-Hirschhorn syndrome, but to a child who wasn’t Fiona at all. And I wanted my daughter.
At the conference, my husband and I got the chance to talk with Amy Calhoun, one of the doctors present. “How does this happen?” I asked her, and I was not just hoping for a more detailed explanation of chromosomal deletions. I was secretly hoping to destroy my self-blame.
“Chromosomes don’t get passed down in their entirety,” Dr. Calhoun said. She was sitting on a hotel bed while Justin and I occupied nice chairs. My husband was holding Fiona to his chest.
Dr. Calhoun explained that, in order for a person’s chromosome one to pull from a smorgasbord of ancestral chromosome ones, reproductive cells undergo a tricky little dance called meiosis. Chromosomal pairs match up and intertwine. Dr. Calhoun raised her two index fingers, pressed them together, and wrapped them around one another like snakes. The chromosomes get tangled. They get stuck together. And then, in biological craziness, they rip apart.
“You can already see the issue, right?” Dr. Calhoun asked with wide eyes.
I nodded. Anytime they rip apart, there’s a risk that a chromosome will have a deletion or addition. I was shocked. Every human on the planet was a result of this makeshift process of creating? It seemed like a miracle we were all mostly symmetrical beings.
But Dr. Calhoun said the process is vital because it maximizes diversity. This way each person is 100% unique. This way some of us are immune to lethal plagues, and some of us are tall, short, fast, slow, good with numbers, allergic to wheat, nonverbal, uber-social, flatulent, fierce. Biology wants a wild mix.
I can still see Dr. Calhoun’s two index fingers intertwining and then untangling. In that moment, a new idea presented itself to me: Perhaps the point of life was not to achieve some kind of perfection. Perhaps illness was an integral part of life’s dance. Perhaps fragility was built into our very design. Perhaps fragility was also strength. Through the neutral lens of science, my kid’s genetic deletion was a product of diversity, and who could be upset about that?
That night I danced to a live funk band with my daughter’s peers, sweating fiercely on a dance floor, holding the hands of a grown woman several inches shorter than me, a woman who didn’t speak words but had an excellent sense of rhythm.
Let me tell you about my girl. Today, at five years old, Fiona too loves dancing. She loves reggae and Elmo and ham sandwiches. She is a hat aficionado, and she owns a denim baseball cap, a penguin ski cap, a white chef’s hat, a camouflage pageboy, a sequined raspberry beret, and a straw bolero. She has been hovering at the twenty-pound mark for a year and can eat a half-block of cheese in one sitting. She loves to color, and she will bully you into joining her by thrusting colored pencils toward your nostril.
She learned to walk independently a year ago. She has maybe five words that you might understand verbally (including hi and momma and ham), twenty or more words through sign language, and an iPad loaded with a few thousand, which she’s slowly learning to use. She prefers nouns right now. Backpack. Grammy. Cole slaw. She feeds herself with a fork and spoon. She goes to kindergarten and learns side-by-side with her typical peers. She is half their size. She needs one-on-one support. She has had dozens of generalized tonic-clonic seizures, all of which have been manageable, but all of which remind me of her fragility, of how easily she could slip from my grasp. She loves to embarrass me by saying “hi” to perfect strangers. I don’t know if she’ll ever do math calculations. I don’t know if she’ll ever read a book. I don’t know if she’ll ever live on her own. I don’t know what else I don’t know. I know that she has broken my heart and put it back together in a shape that is bigger than I knew was possible.
What would happen if we all created SuperBabies? Would we make a SuperRace? Fleets of SuperAdults so smart and wise and strong and nontoxic that they would never get cancer? (But they would of course discover its cure.) By age fifteen, they would teach their teachers. They would outrun all world records. They would eradicate every harmful chemical or they would somehow render all chemicals harmless to SuperBodies. They would, each one, win prestigious awards in their fields, twisting the bell curve into a radiant point of light from which would emanate their stellar, star-like performance. They would never know rejection. They would not know depression. They would not cry, or if they did cry, they would shed tears of existential meaning and fulfillment, reflecting on their infinite successes. And on their holidays, they would gather around fires—propping their lean, tall, muscular bodies onto core-boosting exercise balls—and tell stories of the generations past, when people were not Super but Regular. In those bygone days, RegularPeople had autoimmune disorders and chronic pain. They had broken hearts and failed dreams. They had something the SuperPeople only know through history books: suffering.
We want a SuperRace because we want to eradicate absolutely everything that terrifies us. We want SuperHumans so we can transcend that thing we are: human. But a SuperHuman would lack that crack in everything through which, as Leonard Cohen sang, the light gets in. There’s something in our suffering that we need. We’ve known this for millennia, and we make it clear in the stories we keep telling. The Buddha gave up his palace and meditated beneath a tree for a week. Jesus of Nazareth said yes to a cross. Our ache is our unfortunate, undeniable doorway. Give me your tired, your poor, your huddled masses, says the copper lady with the torch. When we walk into our pain, we sometimes find ourselves on the other side, freed of what we once thought we needed to feel free.
Suffering is a part of life. –Pema Chödrön, When Things Fall Apart
Culturally, we fear disability and try to push it away. The evidence is in both the personal and the public.
Women around me worry about getting pregnant by X age or else they risk having a child with chromosomal anomalies. On a podcast, a bestselling author says that holding onto anger and resentment will give you cancer. Kids with amputations are turned into poster children, and we raise money to try to prevent bodies like theirs from existing. “Don’t worry,” a pediatrician said after examining my second child just hours after I’d birthed her. “Lightning didn’t strike twice.” Let me reiterate: he called my daughter lightning. “How did this happen to you?” strangers ask the amputee, the blind man, anybody with a different body, and the interviewee will tell you: It often feels like a coded way of asking How can this not happen to me? When I was in elementary school, the kids in wheelchairs learned in a separate wing of the building. We—the able-bodied kids—never saw them. Hollywood storylines typically assign suicidal tendencies to quadriplegic people (see bestselling novel turned blockbuster hit, Me Before You) despite the fact that the vast majority of people with spinal cord injuries report good qualities of life.
This response to disability is so pronounced in our culture that Princeton ethicist Peter Singer can still keep his job when he argues that children born with disabilities can ethically be killed before a certain age. Even babies with hemophilia. Why? Because, he says, they suffer and cause suffering: [T]he total amount of happiness will be greater if the disabled infant is killed.
Whoever got the idea that we could have pleasure without pain? –Pema Chödrön, When Things Fall Apart
I spent the second-to-last hour of Fiona’s birth in the backseat of a car. Although my self-hypnosis course had trained me to close my eyes, go limp, and imagine that mental anesthesia numbed the bottom half of my body, I was, in those final hours, raptured by pain. I writhed. I bellowed. I felt betrayed by the pain. My body was, for once in my life, a place I wanted to evacuate. I understood why people said that pain could make them want to “climb the walls.” I wanted to climb the walls of my body, the walls of the Ford Focus, the walls of the sky and up into the stratosphere.
But then, in the final hour, the pain somewhat subsided. At the hospital I stepped into a warm tub, and I birthed the baby who would forever change me.
Maybe this is one good way that new life begins: in the bodily knowledge that sometimes life—with its heat and blood and scream—will push you to the very last aching edge. And you will make it through.
So the affirmation-uttering woman might more honestly say into your ear: It will not be easy, and it will not be comfortable, but it will be, and you will become.
Tonight my twenty-pound five-year-old lay on top of me, belly down. While she dozed, I rubbed my hand up and down her back. I started at her neck, then felt the slight hump in her thoracic spine. My hand descended into her lumbar with a slope. At the base of that slope, my hand curved right, corkscrewed around slightly, and then turned left. Her scoliosis. It’s caused by a few hemi-vertebrae. They are asymmetrical wedges. The curve is significant. It sits prominently in the “requires surgery” category, and yet we are buying time so she can grow larger and stronger.
My stepfather’s broad, rough hands were intuitive. When he was in chiropractic school, his teacher placed a single strand of hair beneath a tissue, and using his fingers alone, my stepfather had to find the hair. He learned to use his hands like eyes, seeing his patients’ spines beneath skin. He rubbed up and down along a person’s back, sensing where the vertebrae needed adjusting. He would look off, mouth open, ear angled as though the vertebrae were speaking to him. Then he would align the spine.
He would never have been able to straighten my daughter’s back.
Even after I’d accepted my daughter’s missing bit of a fourth chromosome, even after I’d accepted her developmental delays and febrile seizures and willowy, miniscule frame, I struggled to accept her spine. For her first two years, I didn’t like bathing her because I saw the serpentine curve beneath her skin. I worried it would twist so badly it would snap her in half. I worried about her fragility. I worried with the same uncontrollable compulsion that I feared my childhood ceiling fan would spin off and cut me.
The world is a terrifying place. We manage it by believing we can control it. And when it hasn’t been controlled—when it doesn’t bend to our wills—we either look for something to blame, or we surrender.
Today, a few years later, I can bathe my daughter. I can look at the curve. I can see how it noticeably alters her hip alignment, her posture, her gait. I see how it is a meandering river inside her back. And I can, as I did tonight, run my hand along it. I feel the twists and turns as attentively as my stepfather would. Only as I sense the slopes and angles, I do not attempt to change them. I let them—those imperfect hemi-vertebrae—change me.
*Most quotes from this paragraph come from What to Expect When You’re Expecting.
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