Each morning after my boyfriend, Erik, left for work, I tucked a scarf into my rain jacket and headed out into the quiet morning streets. The white stucco buildings solemnly marked my shuffle to Hyde Park. We were living in Knightsbridge, London, a skip away from a Krispy Kreme donut shop. The fragrance of sugar and fried dough, equally ambrosial and nauseating, traveled with me. I walked miles that summer dreaming about Alex. He would be a runner I was sure. Together, we would run the western trails that I missed in rain-soaked London. He would play on the elementary school soccer team. Maybe Erik would coach, his good humor refocusing a pile of little boys distracted by the dandelions in the field. He would be curious about the world and as a family we would explore. Most of all, he would be happy.
Our lives in London appeared idyllic. Erik had his dream job at Lehman Brothers and I focused on incubating Alex who sucked his thumb, warm and well-fed in my belly. I lamented the rain–75 days straight that summer–and felt disgusted by my craving for vanilla ice cream with potato chips crushed on top. I did not have a lovely bulge where Alex was growing; I was just squishy all over. But beneath these minor worries lay a deeper unhappiness. Only a handful of months before I had handed in my resignation, forfeited hard-earned top secret clearances, turned my back on a career that both fueled and fixed my adrenaline dependence, stepped out of the intelligence need-to-know circle and joined the rest of the world, as a soon-to-be parent. I thought that being a good mother meant leaving my career behind.
Erik wasn’t entirely sure how to introduce me to his boozy finance colleagues after I moved in.
This is my girlfriend. She just moved to London. She’s pregnant with our child. All true. She used to carry a loaded Glock in the course of her duties, rode Arab horses into unfriendly mountains, holds a number of records for a number of things: high speed driving obstacle course (14.3 seconds), miles run within an embassy compound (30), number of body-shots regrettably performed at Marine House bars (countless). Also true, but left unsaid.
So, Erik’s colleagues would ask, what do you do for work?
Nothing, I would respond.
What do you do for fun?
Erik would watch me from the bar as I pondered my hobbies. Ultra-running, triathlon racing, target-shooting, horseback riding, wine-drinking, traveling to rugged parts of the world with a journal and a camera, alone. At heart I’m a loner. But I was no longer alone. My heart was inextricably linked to another human being and it was taking some adjustment.
Not much, I would shrug. Mostly I walk.
Returning home to get married felt like an escape. Embraced by the love of friends and family, mesmerized by the lap of lake water on the shore where we said our vows, fussed over by the cousins who passed on birthing advice, I was grounded once again. I was not Erik’s pregnant girlfriend, hanging around a mostly empty apartment. I was me, the little girl who had grown up running barefoot on the dirt roads that circled the lake. I was the Dartmouth grad who proudly followed in my father’s and grandfather’s footsteps. I was the trail blazer, home from the Middle East to raise a family.
After the wedding, Erik returned to London and I took the train out to my mother’s farm in Connecticut. I needed to walk the autumn trails, bathe in the scent of decaying leaves, gather chicken eggs, and help with barn chores. I imagined Alex on the farm, spending summers barefoot and dirty, learning to ride horses and dissect roosters. When I return to that moment, that poor decision to hike into the woods leading my mother’s horse by the halter on a windy day with her dogs rough-housing around my feet and the pines singing overhead, I am reminded of my mindset. Anticipating my flight to London, my thoughts fixated on remaking a life for myself. I needed friends in London with kids. I needed a new hobby, one that would accommodate pregnancy, then parenthood. Maybe I needed a dog.
The event that will reverberate in our family for generations happened in an instant. Over the past 16 years, it has been stuck on replay, the pivotal moment of the story–our story–that can never be rewritten. That part where the main character’s flaw is revealed and the world crumbles around her.
Just as we passed the trout pond, the wind picked up and the dogs came racing down from the hills. The horse, quivering with excitement, reared up, lifting his head toward the sky, his ears brushing against low hanging bows. He pawed at the air and I did what any clear-headed pregnant woman would do. I let go of the rope. But he didn’t take off at a mad gallop into the woods as I had expected. He planted his front hooves and let his hind legs fly. If I had only taken one step backward he would have missed, but in my pregnant haze I stood there dumbstruck as Alex absorbed the full impact. I wrapped my arms around him and went into labor.
Alex hung on for nearly two weeks. He might have made it longer but in the middle of the night, while on bedrest in the high risk pregnancy unit, a resident came to check on me. Maybe he was tired. Maybe maternal health wasn’t his interest. Whatever the case, during his quick and routine examination he punctured the amniotic sac that had protected Alex for nearly 26 weeks. Fluid leaked onto the bed sheets. Minutes later Alex came into the world, a translucent two-pound bundle of veins and bony limbs and hair. He took a breath, cried out, and turned blue.
Erik and I had no time to process the nightmare of those early months. The heartbreak of a premature birth; the pain of an injustice that can’t be righted; the needle sticks and blood draws and clogged breathing tubes and the incessant beeping of failure bells; 140 days of neonatal intensive care. On day four, Alex suffered a stroke. Blood poured into his ventricles and leaked across his premotor cortex. As his head swelled from hydrocephalus, his prognosis took a nosedive. During the few moments when Erik and I would stop to assess where we had landed, the pain was just too much. Each of us stared down into an abyss and quickly looked away. We focused on the here and now, the three of us alone on an island of our own making. Of my making.
Our days took on a routine. After an early run, I rushed into the hospital and took my place beside Alex’s incubator. Erik worked from home and joined us in the evening. Once Alex grew strong enough, I spent those days holding him against my chest. Together we meditated, shutting out the tragedies all around us, children sicker than Alex, some of them without a parent, children who slipped away in the night. At some point that fall, Erik returned to London to pack up our apartment and bring back some winter clothes. When we left for our wedding, we hadn’t thought to pack mittens and snow boots.
Despite countless setbacks, Alex put on weight and sometime in January we bought a car seat. There was no baby shower, no celebratory room decorating. We paired things down to the basics and stocked up on preemie diapers. He barely weighed five pounds. On the day of his discharge, something seemed off. He winced when we held him. He wasn’t eating well. He seemed in pain. We took him home only to return to the ER when we realized his head was swelling. He was readmitted to the NICU with bacterial meningitis.
Alex was not expected to live. After all those months of holding him against my heart, feeding him breast milk through a feeding tube, watching him slowly develop, and finally breaking free of the NICU, a bacteria that crawled its way across his skin, entered his bloodstream on a tube or needle, was taking him from this world. He was too small, too sick, too weak. He lost weight and patiently endured his misery in a state of quiet lethargy. We requested a bedroom in the hospital so that we could take shifts holding him around the clock. I remember sitting on a white bed, staring at white walls, pondering existential questions of life and death and suffering. I don’t remember ever closing my eyes.
But after several weeks of agonizing ups and downs, we took Alex home for a second time. I have a picture of him in his Baby Bjorn, his tiny head covered in a knit hat, his curious eyes peeking out at the colors all around him. We were sitting outside on a chilly winter day, soaking up the sunshine. My arms were wrapped around him and I was laughing, the pain of the previous four months temporarily washed away.
The following day we returned to the hospital for a checkup, and in an attempt to tap spinal fluid from Alex’s ventricle, a neurosurgery resident hit a blood vessel, caused a subdural hematoma and sent Alex into emergency brain surgery. It felt as though we were anchored in the River Styx, and no matter how hard we rowed, we were pulled back into the underworld.
The surgery went on for most of the night. When the nurses finally wheeled him back into the NICU, we were horrified at the sight of him. He was intubated but his oxygen levels dropped dangerously low as seizures arrested his lungs. His tiny fists curled rhythmically and shook. His head was swollen and bruised. Silently, he cried out. Erik and I stood to the side, helplessly watching the efforts to stabilize him. A piece of me still stands there, lost forever to the NICU.
Sometime in February, on the third try, Alex came home for good.
For the first few weeks as a family at home, we focused only on survival. Alex had a tube to his heart into which we administered antibiotics over the course of two hours, every six hours, to kill any remaining bacteria. He had bruises and scars over his entire body. He had stitches on top of his head where a drain had been placed and in the back of his head in the shape of a horseshoe where a drainage shunt embedded into his brain. Tubing protruded beneath his skin from the base of his skull down past his belly button, six feet of it coiled in his abdominal cavity waiting for him to grow, draining brain tissue that had been destroyed with his stroke. His future was uncertain. Would he walk? Would he talk? Would he be intellectually impaired? What was his life expectancy? How could we help him? The doctors and nurses deferred to the same answer – we’d have to wait and see.
I’m not really a waiter and seer kind of person, and as Erik tried to rebuild his work-life, I read and researched all I could find on Alex’s brain injury. I breastfed him and made sure he had fresh air, counted his hours of sleep, measured his head for signs of swelling, sang to him, exercised his limbs, and narrated our lives in Arabic and Italian. He spent most of those early months skin-to-skin against my chest, listening to the beat of my heart.
At night, through bottomless tears as I bounced him in the dim glow of Chinatown’s neon lights, I told him he would change the world.
We knew Alex was different from most kids when he began counting in Japanese while scooching himself across the hardwood floor. This was before he began having seizures at the age of four, and after his sister Izzy was born, at the age of 15 months. Languages and math were part of his daily intellectual stimulation. We didn’t drill them, a la Rassias style, but we exposed him throughout the course of our day and strangely, he remembered everything. He memorized whole passages, first the simple sentences from baby books, then entire paragraphs of Fantastic Mr. Fox. He soon discovered math in everything and he tried to stump us with multiplication problems. We enrolled him in a Sunday Chinese school and his lifelong love of languages blossomed. His brain seemed to be on overdrive, as though life was too short to wait for all that knowledge. When we returned from my reunion at Dartmouth, he asked if he could skip kindergarten and go straight to college.
Alex struggled to walk. He limped and tripped and seemed about to teeter over whenever he stood. Izzy taught him how to climb onto chairs and shimmy up the stairs. Then she taught him to run. Alex’s muscles were tight and his left hand was cupped in a fist, tucked into his side. We started running in the house, graduated to the grass, and found our stride in the sand after we moved to the Long Island Sound. Eventually, we found our way to trails. In jogging, we healed. The exercise improved Alex’s gait and balance, built his self-confidence and sense of self-efficacy, taught him that he could get up after a fall, and provided us with peaceful space to chat. We stopped to pick wildflowers and identify trees, watch birds and follow sticks floating underneath from one side of a bridge to the other. Always watchful and full of energy, Izzy hugged Alex when he sat on the ground nursing a skinned knee. She dabbed his injuries with tissues and coaxed him to his feet. For as much as Alex and I needed the many benefits that running provided us, Izzy needed them too.
Alex’s first seizure nearly killed him. We had known that something wasn’t right for a long time. Repetitive movements, crying spells that lasted for hours, gazing off into space–the signs were there, we just didn’t know how to read them. Izzy and I were sitting by the fire on a cold February morning having hot chocolate together. It was unusual that Alex wasn’t up too. We heard him grunt and I tiptoed up the stairs to see if he was awake. He was lying in a pool of urine, foaming at the mouth. His skin was blue and he appeared not to be breathing.
It’s hard to know if it was my panicked reaction, or the chaos of ambulances and police sirens that traumatized Izzy, or if it was being left in the care of the police officers and neighbors to wait for Erik while I accompanied Alex in the ambulance, but as we all gathered in the ER later that morning, I realized that Izzy had stopped talking. A nurse held her hand and fed her crackers and asked her about her favorite toys. With wide eyes, Izzy scanned the hospital and responded with baby babble, her lips ringed with chocolate.
In Alex’s room, nurses took over from the medics, manually pumping him with oxygen. The ER doc ordered a loading dose–four times that of the weight recommendation–of phenobarbital. Almost immediately, Alex fell asleep, began breathing on his own, and was admitted to the neurology ward. When he awoke he was all smiles. He ate stacks of pancakes and bacon, played and sang. His head was sticky with electrodes, but he dealt without a fuss. Every six hours, the nurses added phenobarbital to his fluid drip. It knocked him out but within a few hours he would wake up, happy and hungry. As the 30 hour mark rolled around and we prepared for discharge, we noticed that something was wrong. Our lively, happy, exuberant boy stopped waking up. He opened his eyes but stared into space, unable to speak or move. A neurologist stopped in to examine him. He checked the medical chart, raised his eyebrows, and explained that Alex was suffering from an overdose of phenobarbital. No one had changed the original loading dose order. We were advised to call our pediatrician if he remained in a vegetative state for more than a couple weeks.
For days, we stayed by Alex’s side on the floor. He lay like a rag-doll, frustrated and groggy and limp. All the while, Izzy watched over him, encouraging him with baby talk.
For two months, we worked with Alex to regain his balance and walk again. By then, he and Izzy had developed an understanding. Alex spoke to her in English and she responded with baby babble. It might have been cute in different circumstances. After four months, we were back to running trails, but still Izzy refused to speak. Clearly, growing up for her was just too scary. She needed a protector. We got her a dog.
When we found Mr. Harry Potter at the pound, he curled up in terror as Izzy gripped his neck in a death hold and announced, He doesn’t bark. He doesn’t bite. He’s perfect. Let’s take this one. As it turned out, he did bite, but he never bit Izzy, and for eleven years he slept on her bed and listened to her tell him the many tales of her life. With Potter, Izzy found the courage to grow up and she found her words again.
My devotion to being a mom has many roots. Alex’s difficult start is only one of them, though likely the most powerful. Alex’s physical challenges required attentive care so returning to the workforce was out of the question. I dove, instead, into parenting. With a double baby jogger, the kids and I traveled the country in search of running trails. Erik joined us on some adventures and for others, it was just us three. We cooked and sang and explored academic subjects in Mommy School. We created and read and plunked out tunes on the piano. After Lehman Brothers collapsed and Erik got tired of bouncing between jobs, the four of us traveled by RV across the country and back. There seemed so much to celebrate just being together, searching the night sky for shooting stars, falling asleep to the lullaby of coyotes.
But as Alex’s seizures grew worse, the relative peace we had created began to crumble. Playdates were out of the question. Stores, chlorinated pools, family gatherings, birthday parties, preschool, loud sounds and TV disoriented him. I carried Valium with me everywhere, the only drug that would stop his seizures.
Then one day I discovered the power of eggs. Alex was crying, his brain on overdrive, and I had begun to observe a dietary connection to his mood. Sugars were bad. Fat was good. I cooked an egg in butter and added cheese. Then I spoon-fed it to Alex whose hysteria had reached an all-time high. He could barely swallow for all the crying but somehow he managed. In a matter of minutes he calmed down, wiped his eyes, and looked at me. Sorry, Mummy, he said. For all the crying. Then he scampered off to find Izzy. I began a food and seizure log and went searching for answers. That was the start of our journey with a high fat, low sugar, modified Ketogenic diet. Alex was on medicine, but it had never really done its job. Once we changed his diet, his seizures stopped.
We moved again, and back in Massachusetts we dared to dream. Alex and Izzy were in elementary school and played on the local sports teams and we felt we would find community in our farmy town. We wanted the kids to get their hands into the soil and learn life lessons while working our small farm. We planted a vineyard and an orchard and a garden that needed constant weeding. We invited new friends over for birthday parties and social gatherings. For a few moments, it seemed as though I was back in Hyde Park, picking up where it had all begun.
But Alex was not the average kid. His memory and curiosity were extraordinary. By the time he entered second grade in our new town, he had mastered Algebra. One of his favorite pastimes was reading in the library, surrounded by words and knowledge and the limitless mysteries of life that he had yet to unlock. He had a funny sense of humor, loved puns and riddles, and collected facts about everything. But when his second grade teacher watched him limp his way into her classroom, all she saw was his disability.
During our first parent-teacher conference, she informed me that in her professional opinion, Alex had ADHD and needed extra math help. He daydreams in math class and doesn’t finish his worksheets, she said, her voice full of quiet understanding. She flipped through half completed addition and subtraction problems. He’s just bored, I responded impatiently. He’s way beyond addition and subtraction. I suggested that he bring in workbooks from home, or go to math class in one of the upper grades, or just sit in the principal’s office working on math problems at his level. Gifted children lose interest in school if they aren’t challenged. She folded her hands, smiled down the tip of her nose, and told me my time was up.
Things only got worse. Every morning Alex’s teacher parked her broomstick in the bike rack, set her caldron to simmer, then fed it bits and pieces of Alex’s happiness until he was stripped to the bone. By the spring, he had given up on school.
On the fields and courts and track, things weren’t much better. Alex struggled to keep up, to coordinate his arms and legs, to catch and dribble and kick and sprint, to balance and bravely recover after a fall. I sat on the sidelines fighting back tears, reminded of the days when both of his tiny feet fit into the palm of my hand. Alex’s perseverance won the hearts of the spectators. Parents and coaches cheered for him. Strangers shook our hands. Erik and I said silent thanks to those few kids who dared to pass Alex the ball, who believed he deserved a chance to score, who cheered him through the finish line.
Still, we waited for birthday invitations that never came.
Years have passed. We survived COVID with homeschooling. We faced an emergency shunt revision in the dead of winter followed by months of seizure-ridden recovery. We lost Harry Potter to old age. We have added horses and chickens and a stray cat to our misfit farm. Izzy sleeps with a black lab named Muddy Waters. The kids attend private school where they are learning the joys and challenges of academic rigor. They find inspiration from peers, grow partnerships with teachers, and have come to appreciate the value of the thirds teams. It isn’t all gravy, but they love their school madly. Izzy, who has spent a lifetime watching the world react to Alex, has developed a deep empathy for the underdog. Never a wallflower, she is unafraid of righting the wrongs of the world and leading the charge for change. Alex is enjoying his journey through the world of math and languages and finding his why. Lying in bed after the shunt revision, he designed a seizure detection device and dreams of the day he will found his own medical device company. He hasn’t yet found a voice to share his story.
When I listen to the kids speaking French to each other in the kitchen, each one showing off for the other, I savor the moment. I have stopped wondering what our lives would have been like if I had not set off into the woods that fateful day when the sky collapsed. At some point, I embraced this life, the real one, the one we are living. There is a part of my old self still lingering, that part that believes in bringing good from bad, in seeing adversity as an opportunity to grow. For me, the journey of parenting, this long walk from Knightsbridge to a small New England town, has been filled with too many joys to number, despite its many disappointments. It has to be. It’s a short life. It’s a life worth living. I don’t laugh when I wake up in the morning, but I marvel in wonder at the sunrise. I pour myself a cup of coffee and separate the eggs for waffles and hug each of my children when they enter the kitchen, their hair in disarray, and I am eternally grateful.
These days, I counsel patients in a community mental health practice where I focus on trauma. After dropping Alex and Izzy off at their campus gates, where slate-roofed brick dorms embrace a green nearly as grand as Dartmouth’s, while a golden clock tower chimes the breakfast hour, I head to my office in a renovated factory. Behind closed doors, my patients lead me into a dark and forbidding mental world. Trauma layers itself with poverty and substance abuse, neglect and isolation. I can’t take their pain away, but I can keep them company as they make sense of ruptures, hold their spiritual hand as they forgive or ask for forgiveness. In some cases, psychosis has driven them to the depths of despair. Together, we quiet the voices and take power away from the visions.
The opposite of sadness is not happiness, I tell them, my own version of Andrew Solomon’s theory on depression. The opposite of sadness is functional. You made it here today, and that is a victory.
My patients grieve for the childhoods they never lived, for the parents they never had, for the love they never knew. They grieve for the people they never became. They will never not be grieving because the past cannot be righted. But there is a future that hasn’t yet been lived, and slowly, we open that door and peer across the threshold. They squeeze my hand tightly and let their tears fall, afraid of what they may discover. I reach for the tissues, hand them a few, then dab my own eyes.
Go ahead, I whisper. Step through.