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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Beautiful! Thank you! We lost our son when he was two weeks old. He had Trisomy 21 and was loved enormously. I feel kindred in much of this journey.
My father has hemophilia so you cracked me wide open when I reached that part. We have all suffered alongside him…and I would not change one single day of my life with him. Thank you for your beautifully honest writing <3
My father as well. And now my 2 boys. I had a tough time after the birth of my older son. It’s hard not to blame yourself when you know for certain that a disorder was inherited from you. It’s been somewhat easier with second baby. It’s nice (a weird word to use..) that both of my boys are the same. And they remind me of my dad.
What a beautiful piece. Stunning.
This is an amazing and profound story! You are a wonderful writer!
This was a reaffirming read for me, thank you. We had a ‘super baby’ that then developed a pretty horrible seizure disorder, interrupting the plans we assumed God had obviously laid out for him, which of course were full of good health and happiness. Accepting this has been the hardest part. This was a great read.
Please nominate this for Best American Essays. It is soul shaking. Thank you, Heather.
I could relate to many parts of your well-written, profound story and I appreciate your thoughts on suffering. My youngest was born with craniosynostosis, which was mostly fixed by surgery. It’s difficult for mothers NOT to blame themselves when their babies are born imperfect by worldly standards. Your daughter is lovely, and she is lucky to have a mother like you.
This is a beautifully written article. Thank you for sharing your story! Guilt and regret can destroy a human soul. Forgiveness and acceptance are so healing.
Thank you Heather for sharing your story about your pregnancy and Fiona. Wow. This was so powerful and emotional. I’m not a mother but am a pro life advocate and I teach junior high children about all the life issues. When we discuss disabilities it raises some great dialogue with them.
Thank you again for writing this and I’ll be keeping you and your family in my thoughts and prayers daily.
Oh, lovely, a fetus-hugger using disabled people as your shield.
My body is not yours to control, nor are other women’s. No woman is obliged to bear a child she doesn’t feel she can care for. No woman is obliged to bear a child at all.
I had to go back and reread the whole piece to see if I missed something. I don’t think I did. I absolutely agree that no woman is obliged to reproduce, ever, but your level of hostility confuses me. I don’t feel the author has written about how hard her life is, but about how life itself is hard, Accepting that things can happen to anyone at any time, for no reason at all was my take on this. It’s neither pro or anti choice. It’s just the story of this family.
ORIGAMI was responding to Michelle I think.
Anyways this is a gorgeous piece, but doesn’t support the prolife stance necessarily Michelle. I bet the author would argue each mother should get the freedom to have any safe, legal medical treatments she needs or wants.
Oh, lovely, a hateful remark from someone that obviously has unresolved issues with more than a few things. Suggesting she used disabled people as a shield is about as accurate as someone using pro choice as shield. She doesnt need to shield herself from anything. You obviously do need a shield. Whatever your reason for using your shield is on you. Don’t push your agenda on others. Blaming others and pointing fingers of guilt as a shield. How honorable
This is so powerfully written and goes right to the core of human need to avoid suffering. Thank you for shedding light on a concept I’ve been struggling with for some time.
This was really beautiful and spot on. I do believe in the power of the mind to reduce stress which can help prevent some illness, but that is very limited. We study the Bible, but I can’t accept the idea that one day Jesus/God will come and return the world to a perfect place. How could anyone enjoy all that perfection without pain and suffering.
Your article is wonderful.
I loved this. Thank you.
This is a stunning piece, born out of your pain and resulting perspective shift. It will stay with me and ruminate. Thank you.
Simply stunning. Thank you.
Thank you for this. I too was a super pregnant woman raised by a Louise Hay loving, vitamin popping, kale feeding me super Mom. And my 5 year old son is autistic. I can’t tell you how.careful.i.was. All organic, no tap water, no lunch meat, no gluten, no sugar, nothing but whole, organic, superfoods. His brother was cooked in latte’s and sleeping pills because I just had too much on my plate- and guess what… he’s the typical one.
Well written and heartfelt — I applaud your courageous determination to give your daughter roots and wings.
Beautifully written. Thank you.
This is an amazing read. Thank you for sharing your story. I relate to parts of it being an autistic parent to autistic child. I grew up in a family with a similar eugenics health approach. It was harmful to me and I grew up blaming myself for how I did things and my health issues. I am much kinder to myself which helps me to be the parent I need to be to my son. I try to practice radical acceptance in how I do things. I am imperfect and disabled and so much happier now that I have accepted it.
This is so good, for so many reasons. There’s always been something about the “mind-body connection,” think-therefore-I-am philosophy that has rubbed me the wrong way, and this article spells out the fallacies of that belief system and associated real-world consequences with precision and clarity.
Beautiful piece, thank you. It slowed me down and brought back to the surface the deeper meaning and the essential — and chromosomal! — value of diversity, and pain, and death in everyday life. I am grateful for it all.
Profound. As a physician and mother, this rings true on so many levels.
This was an amazing read and I can relate to so many of the things you’ve put into words. Before I had my children, I had recurrent miscarriages. I was used to controlling so many things in my life, and failing was not an option. I tried everything, following “the advice” to a tee, and I still found myself bleeding my babies away. It is a sad, lonely journey that you feel like no one understands. Mine was filled with the same self-blame you speak of. I was willing to try anything and everything to create the outcome I wanted. It took some time to accept that the outcome was ultimately not mine to decide. Thank you for sharing this amazing journey of self-discovery and acceptance. Beautiful piece.
This is the most stunning essay I will ever read. Thank you for putting your thoughts together so brilliantly and with so much love. I have always had misgivings about our tendency to assign responsibility for everything that happens–fortune, misfortune, and everything in between–but I couldn’t find the words for it. You lay it out clearly and unmistakably.
In other news, the expression on your daughter’s face is impossibly cute. She looks like she presides over everything.
This Momma Bear thanks you for the superb writing and the freeing words.
I need this. I need you – I need women in my life who can have these conversations and create these diverse communities for my family. I love everything about your essay and I love your family. Thank you.
Just brilliant – my child is not disabled, but I can relate to the privileged idea of wanting to create a “superbaby”. How your experience became the fulcrum for your 180 turn is amazing – and a potent metaphor the resonates broadly on many levels.
For a million different reasons, thank you.
O How this reminded me of my pregnancy 13 years ago. I even kept my breath, passing trucks to avoid inhaling the smoke. Then came the autism diagnosis. Then blaming from myself and others. No no-one is perfect, but we are perfect as we are. Thank you for your inspirational story.
Beautiful, and very emotionally raw. Thank you for sharing. I work with hospice children and struggle with a lot of whys and hows, but your piece somehow manages to make sense of it all. At least momentarily.
Wow. Thank you. My son will be two in may and was diagnosed a little over a year ago with a rare form of epilepsy called infantile spasms. It has caused developmental delays, he is still not sitting independently and has no words yet. I have really struggled trying to accept all that has happened when we started this journey with a healthy, on target little baby. Your words have hit home with me and I hope I can come to terms with our new normal as beautifully as you have.
My daughter had infantile spams, too. She’s now 5 and if you want to connect, please let me know. Lots of love to you!
My daughter also had Infantile Spasms which were brought on by the massive stroke she had when she was 6 weeks old. She is 5 now and is doing very well. Keep your chin up. You are not alone in your struggle.
I am so sorry for your self-inflicted suffering (I was guilty too) and so glad that she is precious to you as she is. Cherish her.
The body is controllable. That doesn’t mean that illnesses are one’s fault. Those two are not the same thing, though.
This is a stunning piece of writing. Thank you.
I needed this tonight. My not-SuperBaby just turned 15 years old and it is hard right now. Hard to accept his differences. Hard to know how to parent him. Hard to let go of what is “supposed” to be happening in his life. Thank you for the reminder that acceptance makes all the difference. Gonna go hug him now.
So beautifully written. Wow.
I also have the Louise Hay book, and I recently had a kidney stone attack, so I pulled it out to see what I was doing wrong in life to cause my own kidney stones (insert sarcasm here). On that same page was a listing for “Food poisoning.” Are you effing kidding me??!! One can manifest their own bout of food poisoning?! I think it even said something heinous like, “Inability to trust people.”
Thank you for calling bullshit on this positive thinking/manifestation mindset, which is really avoidance and control all prettied up.
Your daughter is lucky to have you as a mother, and you are lucky to have her.
Your baby truly is a superbaby! She and you have to work so much harder for things that most take for granted every day. Such a wonderfully written account on the first 5 years of a beautiful life. Thank you for sharing.
“It will not be easy, and it will not be comfortable, but it will be, and you will become.”
You have spoken to so many hearts with your article. Mine has recognised you as kindred. Thank you so much for writing so eloquently and generously. Your journey is a grand and graceful one and your light has shone so vividly through this article that I can see it on my path… ahead. With gratitude. Jane x
Such a stunning piece of writing that moved me and brought me to tears. I am currently in hospital with my 6th baby who is just 4 weeks old. She has had so many tests, a lumbar puncture and had suspected sepsis and meningitis and viral and bacterial infections. After two weeks we still have no answers and I have googled her symptoms, convinced something will be wrong with her permanently, the not knowing being difficult to accept. I have answered so many questions, worried about doing the seeding during my c-section I needed to have, guilty that something was wrong with my milk, scared that because I had somehow caused this to happen. I can relate to trying to do all the ‘right things’ in way of my diet and exercise during pregnancy. Accepting that it is not my fault that she is in Hospital has been a challenge. Thank you for sharing your story, you are truly an amazing writer.
This is beautiful. I’m in the hospital with my mom who just underwent surgery to fix her spine. A parent-child bond is so special. Thank you for sharing yours.
Hello Heather, Thank you for sharing your story. You speak a lot of good truths. I have studied the theology and benefits of suffering for 30 years, and experienced a share of it myself. There is an excellent book that is out of print now that not many people know about. I think you would benefit from it – it is called, Blessings, by Mary Craig. She is an incredible writer and had two children with disabilities – one severe, the common name was Gargoyle Syndrome, and the other with Downs. They were totally unrelated issues genetically. It is a treasure of a book.
Hello Heather, Thank you for sharing your story. You speak a lot of good truths. I have studied the theology and benefits of suffering for 30 years, and experienced a share of it myself. There is an excellent book that is out of print now that not many people know about. I think you would benefit from it – it is called, Blessings, by Mary Craig. She is an incredible writer and had two children with disabilities – one severe, the common name was Gargoyle Syndrome, and the other with Downs. They were totally unrelated issues genetically. It is a treasure of a book. God bless you!
Thank you ~ ♥ to ♥
Amazing! No words about your words would adequately capture all that I felt in your story. Thank you for allowing us to breathe in some of your experience. <3
As the mother of a now five-year-old 23-weeker, so many parts of this piece sang to me. Especially significant was the fear that Fiona would aspirate on her own spit . . . our daughter’s heart surgery at 14 days led to paresis of her left vocal fold, so the same fears devastated us. It’s incredible how painful it can be when your child cries because she is the only one who can’t have lemonade at birthday parties or hot chocolate at the neighborhood Christmas tree lighting. I’m sorry you have endured this too. Beyond parenting, I’ve been writing recently about my friend’s death at 28 of ovarian cancer. I have been thinking about the shame in buying into the war-type metaphors that culturally inscribe damaging beliefs that equate heroic battling with “winning” against cancer. As you so probingly explored, this belief system is fear-based, and once a light is shone on it, it’s difficult to perpetuate (which is a good, if not socially convenient, thing). From a technical standpoint, as a CNF writer myself, I really enjoyed seeing how you wove these parts of your life and will definitely be returning to this piece as an example for myself and writing clients I mentor. Thank you most sincerely for sharing this intimate portrait of your life.
I am a bit speechless after reading this, so struggling with what to say. I think this writing is so important and amazing and soulful. I’m a bodyworker … I use mind body techniques with my chronic pain clients. And I’m always frustrated by the Louise Hay/affirmation approach as it misses so much of what is true and important. You capture that so deeply and beautifully here. Thank you!
My superbaby was born with Hirschprung’s Disease. She was five when she died, barely 25 pounds. Different diagnosis, different experiences, different outcome, but the same nonetheless. Thank you for sharing.
I just asked my friend the other day: “Do you remember in the 90s when every illness was your own fault?” I remember seeing Carolyn Myss on PBS discussing this.
When I was pregnant, the big fear was having an Autistic baby. You were supposed to have fish oil (Mercury free) to avoid this. No processed foods, no epidural, Mercury free vaccines on a delayed schedule, etc. I’ll be honest, I couldn’t do all of this. I craved sugar, I forgot to take the fish oil. I couldn’t bring myself to pay $16 for organic berries. I vaccinated. And, guess what? My younger son is autistic. The big mommy fear circulating happened to me. I’m sure some of my mommy peers have secretly validated their controlled, autism avoiding regimen and wondered what I did wrong. Answer: nothing.
Actually, I’m the lucky one. My kid is awesome. I have grown so much from getting to be his mom. I have learned what the real goals are, real expectations, the real things to celebrate. I have been introduced to an amazing community of people. I have learned that difference has value and that everybody is brilliant. I get to know this while other people spend their energy striving for awards and recognition given to people who meet very narrow and controlled expectations, while ignoring much more important qualities and noteworthy things. And, whatever way my kid enters into adulthood, he’s going to be great.
Thanks so much for sharing your story.
My son is 4 and also has WHS. This essay made me cry for many different reasons. It’s really perfect. You captured my despair and resolve so beautifully. Thank you for writing this.
Beautiful piece. I’m an internet aggression researcher, and I see the same thing embedded in the language that people use to shame one another – fear of mortality, of suffering, projected onto others for momentary relief. It sounds as if Ms. Hay has made a great deal of money codifying what is essentially a defense mechanism that we would hope to outgrow as we age.
I really needed to hear this today. I’ve been struggling with my son’s issues these past weeks and have been feeling hopeless, lost, and confused. I have a ways to go before I can sort my feelings and thoughts out, but reading this has helped me get started. Thank You.
If you are married, why did you have to ‘convince’ your husband to try for a baby?
Seems like an unnecessarily invasive (and kind of judgmental) question to ask someone you don’t know. Not all married people want babies. And some unmarried people do; the two things don’t automatically go together. Besides, she doesn’t say that she had a hard time convincing him. Maybe it was just a matter of telling him she thought the time was right.
No, D., I’m not being judgemental. God knows, I would never judge anyone else’s reproductive choices; as the mother of a deliberately only child, I know what judgement is. I’m just curious. I thought that most people (not all, mind you) marry to have children. I’m just wondering; no negative feelings or judgements.
There are many reasons to get married beyond having children, and plenty of married couples choose to have a happy, fulfilling and child-free life.
I’m married and child-free and couldn’t have a more fulfilling marriage. Many people marry because of they are in love, and not everyone’s purpose in life is to have kids. We’re all unique.
Getting married and having children are two very different, separate choices, especially these days compared to fifty years ago. I know plenty of people who are married with no children and very much want to stay that way. I also think it’s common for two married people to want different things (children, number of children, etc.) and continually negotiate those two viewpoints throughout their marriage.
I’m a special education teacher. And a mother who still behaves as though anything i do will ruin my 3 year old child. I always see my students as gifts, but when i was pregnant, i feared having a child with a disability like my precious students. This article broke my heart and gave an exact picture of what a loving mother would go through. And still does go through. I’d be so scared and paralyzed all the time. I’m already so freaked out and my baby’s body is strong. Beautiful and perfect article.
What an incredibly beautiful, important essay. One I needed tremendously and sent to my husband immediately. While our stories are very different, we overlap in so many areas. I have no doubt I will reread this piece many times throughout my life. Bravo.
Side note: a beautiful child in my daughter’s mainstream preschool class has the same condition as Fiona. I did not know the name, but it is unmistakably the same. And she is lovely and loved and growing and learning and flourishing and simply one of the gang.
Sending you love and peace.
As the parent of a 49 year old who was expected to die before five, this brought back many memories and even a bit of wisdom I may have forgotten. Thank you for sharing your gift to describe such experiences. Loneliness can be paramount for all of your family. This helps us to remember we have opportunities to share with those who understand. And this many years later? I admire the progress being made. I realize there is still a long way to go. And I am delighted to see my precious daughter enjoying her life more than she ever has, feeling confident that she can contribute to others in her special ways and tough enough to patiently work her way through medical care, knowing that it is not permanent. She has taught me much I never would have known without her.
This was absolutely beautiful and moving. So much of what you wrote about spoke to me. As one mother to another, I’m thinking of you and your beautiful daughter, and sending lots of love. Thank you for writing this.
Thank you for this.
This essay was incredible. It really spoke to my soul, as a mother.
Just wow. As someone who cannot have a baby due to premature ovarian aging, I carry around a lot of self judgement and self blame on my shoulders. Thank you for writing this. You are a lovely writer and I appreciate your article more than you will ever know!
As a human, I found this deeply moving. As a writer, I found it clever and remarkably expressive. And as a mother of a child with cerebral palsy, I found it touching. Thank you.
This was an incredible read. The lack of control you have as a parent is a huge adjustment for those of us who thought we had the universe under control.
I have never had a child, although I desperately wanted one. I almost passed over this piece because I thought it was mommy-oriented. But THIS beautiful, transcendent piece of writing will stay with me, quite possibly, forever. Beautiful writing, thinking, humanizing. Beautiful work, Heather.
My daughter, Aurora, was born with a partial trisomy of the 16th chromosome when I was 23 years old. I still can’t talk about her at times without tears plunking down my face. She’s my forever baby, 15 now, and my only child. I should probably write about her like this someday. To let the public know.
“Culturally, we fear disability and try to push it away. The evidence is in both the personal and the public.”
I hate parks. To this day I still hate taking Aurora to the park. It’s worse now that she’s older, and at 15 so clearly different.
But she, just like Fiona, does like dancing. https://www.youtube.com/watch?v=c-Ie7xpMVdE
Thank you for your word, Heather. I’m right there with you.
Wow! Just wow. This was AMAZINGLY written! I want to hug you right now. You’re an amazing mother!
Having trouble leaving a comment so hope this isn’t the 5th one that comes through.
Beautiful article, thank you for writing it. I’ve written about the expectation for ‘superbabies’ from a different, less weighty angle (which pales into insignificance next to what you have written).
I wish you and your family all the best.
Thank you so much for sharing your story. You articulated so much of what I have felt, I literally spent 60% of this essay in tears. Fellow hypnobirthing mumma (although I admit our son’s birth was actually the peaceful experience promised) but after he was born at our wonderful midwife clinic the paediatrician on call was indeed called in. Months later after bloods and MRI’s and CT’s it was confirmed he had Saethre-Chotzen syndrome, characterised in his case by a gene deletion. Everything you wrote…wow yes.
And the last part about running your hands along Fiona’s spine and feeling at peace and having acceptance of it’s uniqueness. I have had the same experience with my sons skull. It is lumpy and bumpy and out of shape, with bone missing and titanium plates protruding. For a long time I couldn’t touch it without feeling a sadness rush over me, a want to fix it all. But I am learning to love the bumps, learning to love the story it tells and learning slowly to accept that I can not give him the gene that was never there.
Wow. As a person struggling with many many invisible illnesses, thank you for reminding me it’s not my fault. All the positive thinking in the world isn’t going to fix me. (Btw, chronic EBV is just one of my issues.)
Thank you. Thank you.
Beautiful and powerful piece. Thank you for capturing the pain, acceptance and joy that we experience when parenting special needs children.
I apologize for not reading the entire story because you lost me at ‘didn’t want to project gender roles on him/her/them’. As a parent, your role is to help guide them, teach them right vs wrong paths/ choices. That includes understanding their gender. You cannot blur the lines. My boy, at age 3, watched ‘Frozen’ and became enamored with Elsa. He wanted an Elsa doll and even mentioned he like the color pink. I listened to him and handed him a GI Joe figurine. I explained this is what boys play. Case closed. I wasn’t rude and he wasn’t offended. He does all the boy stuff now- plays in dirt, Helps me with yard work, trash etc. but what if I had not explained the gender roles or worse yielded to his fleeting whim? How confused would he be? Kids crave structure/ routines and Consistency, which leads to happy and confident kids/ adults. If you set standards/ expectations of chores/ hygiene then why wouldn’t you do the same with gender? Why contribute to the confusion? Just guide them. Teach them.
You should kept reading…sad you missed the whole point…
Is this comment a joke?! This woman wrote a gorgeous, touching essay about coming to terms with her child’s disability and life’s beautiful imperfections, and *that* is what you latched on to?
I honestly feel sorry for you. You sound extremely narrow-minded, unsophisticated, ignorant and very cold. No one in their right mind would heed your advice, based on what you wrote here.
Interesting example to go along with this piece, however. Along with genetic abnormalities and other birth defects, sometimes extreme personality flaws just can’t be remedied.
Angela – Whoa, I can’t believe that you think not giving him an Elsa doll set him on the path to your idealized heterosexual, masculine life. Do you know that 100 years ago, pink was considered a “boy” color? And yet, many boys of that generation still turned out straight? I don’t think it’s confusing for kids to play with toys marketed to the opposite gender, and I don’t think that pressuring them to play with or avoid certain toys has any effect on their gender identity or sexual orientation.
Her comment was honestly stunning in its cluelessness. A part of me hopes it was a joke, but alas, I fear it was the real deal. I guess, in her mind, GI Joes make the man! (And does this mean that girls should only play with baby dolls and tea sets?!! Good God.)
BTW, I have a friend with a beautiful four-year-old son whose favorite toy at the moment is a Wonder Woman doll. His parents didn’t even think twice about giving it to him — he loves Wonder Woman. Cool.
Oh, yeah — and pink is STILL a “boy” color. Plenty of men and boys wear pink shirts — they are actually pretty popular in the business world among “real men.”
Perhaps this woman lives in a time capsule stuck in 1955.
You should consider reading the whole article. It is a work of art.
I feel sorry for your child. Google the name “Leelah Alcorn.” You sound like her parents.
Angela – I understand that you are trying to do the best for your child in your own way, however perhaps this article if read fully could help you understand that we cannot be perfect parents and shape the perfect child – none of us. In my opinion it could be damaging to force a gender role onto a child and could cause severe unhappiness in the worst cases. My own cousin had parents who tried to force him to be more masculine. He used to wear sheets over his head to pretend he had long luscious hair, and he loved to play with Ken. He was given Action Man (pretty much the same deal as GI Joe) and taken to karate classes multiple times a week with his Dad. His parents desperately tried to force him to be “normal”, we could see the mania in their eyes as they talked non-stop about how much he loved action man and karate. He grew up and came out as gay – he was rejected by his parents and so tried dating a girl to please them. He is now single and doesn’t talk about his sexuality anymore. His parents are happy because they can pretend he is their version of normal, but he is not happy, and it makes me so sad to see as he is such a caring, beautiful person. I have tried to reach out to him, but sadly parents are the ultimate shaping force for a person and he will have to undergo his own battle to discover for himself who he really is and accept his wonderful self. I’ve seen the damage these parents have done to their other children too simply by trying to force normality, causing their adult children to become stuck paralysed and unable to accept their individual traits.. It’s my opinion but surely the best thing you can do for your child is to love them for who they are and allow them to discover for themselves their individuality. I’m not saying force them to defy gender norms (again forcing = damaging and also ultimately pointless as you can’t force someone to be different than they are) but to just accept and love them for themselves whichever shape they take.
Profoundly validating. Bravo! You are such a good mom. Go girl and keep repeating so
that all can come to know truth.
Thank you for this article. I have a son who is now three years old who was born with a deletion on his 13th chromosome. I feel so much of this, very personally. You have beautifully captured the pain and the acceptance and joy.
One of the questions we ask expectant moms is if they know the gender of the baby. Many answer they don’t want to know and someone is bound to comment that, “it doesn’t matter as long as the baby is healthy.” Nobody wants their baby to be ill or to suffer, but saying something like this implies that perfect health is THE most important thing for our children. It implies that the unhealthy were not wanted. Thank you for writing this.
You have beautifully articulated what those of us in the disability rights movement have been trying to say for decades. Our lives are not tragedies. They are journeys.
Darrell, Yes, I take many of my cues from the work you’ve all been doing for decades. You’ve been excellent teachers to me. Thanks for doing the good work…
Wow. Many blessings to you, your daughter, and your family.
Amazing how our children can teach us so much, about them, about life, and about ourselves and our false belief systems.
Thank you for sharing your story. Not only have you opened my mind and heart more to the world around me and the people in it, but I also look at myself and my own health and body issues differently. Who would I be without them and without the journey they’ve brought me on? Not me, I suppose. And that’s quite a profound thing to learn.
Extraordinary essay! Thank you for your deep reflections on your own coming to terms with reality. I, too, was raised in a home where everyone “creates your own reality,” though it was a bit more radical than Christian Science. And I, too, later found Pema Chodron, while wrestling with an intransigent reality. So I feel a deep kinship with your path.
I wish you and your family the best, and recommend very highly the book “Far From The Tree.” I’m confident you will find much wisdom there, and much compassion.
Beautiful text. Thanks. I translated a paragraph into Spanish for some friends on FB (I am Chilean). May I use it? Just to share and discuss in a close FB group about Down’s Syndrome? It’s the paragraph that talks about how culturally we fear disability…
I have another question for you, or comment: When you say –even babies with hemophilia– why do you say “even”? Is that because hemophilia is not a disability? I’m asking because it made some noise when I read it… it only made noise because I find what you have written so perfect, both in style and in content. Regards.
The thoughts you expressed in this incredible essay brought back to my memory a devastating conversation I had with a dear friend who had just learned her cancer had spread, and who had also just read The Secret. She turned to me and asked, with desperation in her voice and eyes, “What did I do to attract this?” She was the most gentle, loving and caring woman I’ve ever known, and I was furious that a stupid, stupid book could add guilt to what this lovely woman was already suffering. I still am. It’s not right. I’m glad you know that. Peace to you and yours.
Thank you. And bless you.
I love this essay. As a mom with a 14 month old son with 5p- reading this was soothing to my soul. Thank you
I have reread this essay many times. It is simply amazing. I am a pediatric speech therapist and a special needs parent, your words touched my soul. Thank you!
Thank you for writing this stunning piece!! I have 2 children, and relate so much to your story. My first, now 12, has autism, global developmental delays, epilepsy and a variety of other diagnosis, and my little one (10 months) was born with complete bilateral cleft lip and palate and a hole in his heart. We are currently getting ready for his 3rd surgery and 5th hospitalization, and planning an early first birthday party, since it’s very likely he will still be recovering in the hospital the day he turns one. It can be isolating to have these amazing, yet different children. I have a hard time relating to moms of typical children, so it is so nice to read about other parents with similar feelings. All the best to you and your little girl!
This is so beautiful. Our daughter is almost a year old now, but was born at 24 weeks, weighing only 1 lb, 5.2 oz. She spent the first 4.5 months of her life fighting to live. We still don’t know what the future holds for her- but we know we would not trade her for the world. What you said- I want my daughter- if she had gone to term she would be a different person, and I’m glad for the person that she is.
Wow! I don’t normally comment on things I read, but this really spoke to my emotions and was beautifully written. I am currently holding my baby in the NICU who was born at 25 weeks. It has been a terrifying experience, and there is a part of me that will probably always blame myself even though I know that’s wrong. This baby has already changed the way I view things, and I have a feeling he has a few more lessons to teach me. I am already learning how little control I have over life, and how to accept that. Thanks for sharing your story!
I had my share learning to embrace the imperfection in my son
So beautiful. My first was diagnosed with HLHS when I was 17 weeks pregnant and I had many of the same thoughts you shared here. I did everything “right” – I thought I was in control, and with that ultrasound began the slow realization that I control nothing. My daughter passed away at 4 days old, some people can’t comprehend that there are things that doctors and medication cannot “fix.” I miss her everyday and talk about her often with her little sister. Thank you for sharing about your beautiful Fiona and the lessons that she’s taught you.
Beautiful! Thank you for writing this! I have an “invisible illness” and subscribed to the “its my fault and I did something to make this happen or deserve this” Philosophy and that I felt unwanted and unworthy of life because of it and realized only later on that if I believe that for myself – then I believe that of others too! I have changed because of it and I hope that this piece is read by many others because people need to understand that people with illness and disabilities deserve life, are not less than, and certainly and most importantly did not make this happen to themselves.
I have lost many babies before they were born and to read this was so healing for me. I know that I was not at “fault” for what happened but I have been conditioned all my life that if things did not go right, it is because I did not do right… I have an amazing five year old now and life is good but I never forget my babies that could have been.
What a wonderful piece of writing. You communicated so many feelings I have experienced as a mother to a son born at 25 weeks. You have a true gift and I thank you for sharing.
Thank you for this stunning piece. You are an amazing mother, writer and human being. It should be required reading for all parents and future parents.
Childless by choice, never thought I’d read an article on pregnancy that I truly liked. Great writing makes all the difference, and this was.
Folks, These comments are amazing. Thank you! I’ve replied to many of you, but my comments don’t always seem to go through (I think because I forget to tell the system I’m not a robot.) But I just want to say thank you. Your stories have made me rejoice and laugh and weep. Thanks for sharing your responses with me.
I’m glad this link came to my attention, a good read, even though I am not a mother. I just wanted to let you know that the nipple shields are made of silicone. Silicone is metal, of course.
Of course, I messed up my own comment – d’oh!
This is amazingly well-written, and very moving. My nephew has Apert Syndrome; his big facial reconstruction surgery is in less than a month. I’ve just sent your article to his mom and grandmother–I know they’ll find this at least as insightful (probably more) than I did. Thank you for sharing your story.
Oh what a beautiful article! Tears flowed, had to stop reading for a sec. This is something every soul should read! I torture myself endlessly, telling myself I’m not doing enough, not raising a “perfect” daughter, etc, etc! The truth is that beauty is our uniqueness . There is no “perfect human”. We are all on this earth together. Let’s unite, share each other’s heartaches, support one another. Love!
Thank you for this beautiful, smart, and moving essay. I got pregnant for the first time at 42. My partner and I did genetic testing, assuming we would terminate if our baby had a trisomy. We did not think we were capable of taking care of a disabled child. She didn’t have a trisomy, but she was born with a birth defect that can be isolated or can be part of a syndrome. So far the defect appears to be isolated, and she’s had a couple of successful surgeries to “repair” her. I suspect that most people have no idea that she wasn’t born “normal.” What my bright, willful, non-snuggly, beautiful girl has taught me is that you love and learn the child you have–the reality of her/him as best you can understand–and not the child you once wished or imagined you had. I’d like to go back and tell my 42-year-old self that I was too focused on fear and not enough on love and strength.
This is an incredible article. Very honest and very powerfully moving. Maybe we strive to be everything that society and family expect us to be, and forget how to – just be, and accept ” it is what it is “
This hit home. Really hard. When my twins were born, my son was (and is) the picture of health — but my daughter had Trisomy 18, and she passed away within an hour of her birth. So many people told me I was so lucky to “at least have one of them” and that my daughter was “better off now.” They told me I was “fortunate” to not have to face raising a child with her many problems. And I wanted to scream at them, but instead, I told them — as calmly as I could — that every day I feel her absence, and that I would take her back right now, in a heartbeat, with every single problem she would ever have. Because she wasn’t the sum of her problems. She was simply my daughter, and she was perfect in her own way. Thank you for reminding me of how beautiful her life would have been.
Brilliant and lovely and moving and profound. As a psychologist and mother, your beautiful piece about your unique family is full of universal truths. Thank you.
Brilliant and lovely and moving and profound. As a psychologist and mother, your beautiful piece about your unique family is full of universal truths. Thank you.
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This message could not have come my way at a better time, although I would have loved to receive it years sooner (at the same time, I recognize that I also might not have been ready for the full message before now). Thank you for opening a door to healing through this beautiful work. You have a remarkable gift.
Thank you a thousand times for this article. I have passed it on to two friends who are midwives.
I have also posted it on the Australian Alopecia areata website, where so many people and their parents deal with feelings of guilt for this autoimmune disorder.
And you have helped me too, both personally and professionally.
Thank you, and I hope your family is going well and your kids are making you laugh everyday.
This was phenomenal. I, too, feared that my childhood fan would unhinge and chop me to bits, and that fear had carried into adulthood. I’m not a parent myself, but one of the largest hesitations is that intrusive worry that a organic food, non-toxic home, and positive thoughts can’t protect us from the unknown. Reading your piece cracked open my heart in new ways–if I were to have a child, if that child were to be born with a disability, and if my idea of motherhood were immediately turned upside-down, it would be okay–I would be okay. I truly appreciate your openness and honesty. I wish all the best for you and Fiona and you continue embarking on your unique journey.
Thank you so much for sharing your story with such a honest and love.