On the Surface

Mark is hosting Dungeons and Dragons tonight. Since taking disability after cancer treatment, D&D is Mark’s most effective treatment against the depression that can sneak up on him if he doesn’t arm himself with a purpose. Noah likes to sit with the gamers (Noah signs “friends” by alternating his index fingers, laying one over the other) at the card tables set up on the back porch. When the players laugh, Noah laughs, though he doesn’t understand what they are saying, why what they are saying is funny. Occasionally he takes a turn rolling the dice, but usually he watches his iPad, one ear on the conversation, waiting for words he recognizes, waiting for laughter.

Tonight Noah has been given a stack of blank copier paper and a blue highlighter. He bends over his work like a jeweler inspecting a tray of diamonds. His nose almost touches the paper, he is both so intent but also so almost-blind. We still don’t understand his vision issues. He is significantly near-sighted, but it also seems being close to a screen or book helps focus his eyes, still the nystagmus that makes his eyes flicker and dodge. A variety of examinations by a variety of experts have yielded no concrete answers, no applicable strategies. Some tell us to try glasses; some say glasses won’t really help and will only confuse his adapting perceptions. Noah can’t tell us much. He just adjusts.

I have walked by the door to the porch several times to check if he’s being disruptive to the game, but he is sitting quietly next to Mark, diligently drawing. I post a picture on Facebook of him in such studious pose, label it: Dungeon Master’s Apprentice. The picture gets many likes. But that captured moment is like so many: on the face of it, Noah is accomplishing something that looks so like what other children are doing. I post a picture of him riding a horse like he is taking a lesson, but it is hippotherapy. I post a picture of us at the pool, but after years of lessons he still cannot swim and we stay in the shallower end. I post a video of Noah ‘running’ the 50 yard dash at a track and field event for his school district’s special needs children. He crosses the finish line though he comes in last, and I am proud because he mostly stayed in his lane, didn’t fall, and ran the whole length without an adult to guide him. But that is not competition; that is participation. And for us, it is enough, but it isn’t what it appears to be.

When I share pictures like these, usually adorned with a clever quip or positive message, I am sharing my son, and my love for my son, and our adventures as a family, with my friends and our family and many acquaintances. This is as it should be. But each time I share these pictures I am also lying. The lie is the one I tell myself in trying to convince myself that my heart doesn’t ache with sadness over the limitations of Noah’s accomplishments documented as celebrations.

I know I am not alone in telling this lie. Social media is full of them. Lies of omission told by the abused, the abusers, the lost, the lonely, the insecure, the in-debt, and the unexceptional. What we present is not what we are. What we present is only what we wish for.

At 9pm I decide it’s time to retrieve Noah from the porch despite his diligent tasking. His face and hands are littered in blue highlighter graffiti. He grabs for his stack of papers, maybe 7 or 8 sheets, says, “Wook!”, proud of his art. I oooh and ahh, and I try so very hard to ignore that every sheet is covered with roughly-drawn circles, the only shape in 13 years he has learned to draw. Pages and pages of almost-circles.

There should be a word for this feeling of almost. Bittersweet feels too tender, a word for reverie. I want a word that is pride and sorrow intertwined. I want a word, a fresh addition to the limits of language, so I can claim this state. At the same time, I berate myself, think a better person–a better mother–would have by now shed her sorrow, managed her disappointment, and internalized the optimistic messaging she posts along with her Facebook photos. I adore my child, and I am so proud of his half-words, and small gains, and his pages of almost-circles, but I too remain almost-complete, my mother-heart more break than burst.

Year Thirteen

3/4/18 | Today you turned thirteen years old.

For the second year in a row, you have strep throat on your birthday, so it is fortunate I didn’t plan that big party I have imagined but never held. You lack the ability to tell time, to know what a minute, an hour, a day, a year is, and so I am able to squirm off the hook. A few days ago, while you played in the bathtub with your cars and toy bears, I whispered to your dad about how I’m disappointed in myself, how I let my own ambivalence about your birthday prevent me from providing you with a birthday event you would delight in–trampolines, bowling, maybe visiting dogs at the Humane Society–, because you never realize what you are missing. Some days I think I should not be forgiven for the ways I skirt around motherhood like it is a fire I cannot get too close to for fear of getting burned. I am sorry that I cannot fake it better, even for you.

I thought yesterday that maybe we should just stop celebrating your birthday altogether. What a relief that would be. I wandered around the toy store looking for gifts to buy you, and keenly felt the pointlessness of my effort. Aisle after aisle, there is nothing left for me to buy. We own all of the toys for babies or toddlers that might interest you, and everything else is, well, not for babies or toddlers, especially one who is 90lbs and nearly as tall as my shoulder. I bought some foam blocks to add to our collection because Legos frustrate you and anyway you cannot imagine the castles or spaceships you might build, that might spirit you away. I bought a dog-shaped sprinkler for when the weather gets hot again, because you still love water as intensely as when you were a baby. There is also a Thomas & Friends train track. We will wrap your presents and you will thrill at the unknown even if you barely pay each gift itself a second thought after opening.

On my drive home from the store, a fragment of what I thought was a poem flitted through my mind: “…I put away childish things….” I thought perhaps it was Kipling, but a quick online search and I was reminded the line comes from First Corinthians, the Bible’s chapter on love.

11 | When I was a child, I spoke as a child, I understood as a child. I thought as a child; but when I became a man, I put away childish things. 12 | For now we see in a mirror, darkly, but then face to face. Now I know in part, but then I shall know just as I also am known.

You won’t have that opportunity, I suppose, to transition into a man. You’ve just barely become a child. At six feet you may be six, if we are lucky. I don’t know what constitutes a teenager, an adult: is it merely years on the earth? Must we also have our years and our body and our mind in sync as well? Who would have thought, thirteen years ago that this would be our reality. I feared, but I couldn’t have known. I’ve stopped trying to predict our misery; and yet, holidays release a predictable, yet still relentless, wave of depression that subsumes me before I can anticipate its arrival. Even as I know that birthdays don’t change anything. Yesterday and tomorrow, we are the same.

When you turned one year old, I wrote to you in a journal I once thought you might read: “I am so ambivalent. You are not what I expected and yet you are everything. In many ways, you are as puzzling to me as you were the day you were born and yet I know you as well I know my own body.” In thirteen years, those words are as true and as bittersweet as when I wrote them. It seems that as you grow, the mirror will remain dark, and I will still only ever have a partial understanding, a glimpse, of who I am and who you are to be.

In the coming years, whether we count their passing as worthy of celebration or no, our little family will stumble along with our good intentions in the lead, hoping to get this one life right at least part of the time. Enough will have to be enough. I can forgive myself for not yet telling you it is your birthday this morning, for not throwing you a party, for not knowing how to raise you all of the days in between the years. The rules became inapplicable to us so long ago. And I can accept, because I have to, because I’ve learned I have to, that I cannot guarantee you a safe place in this world. Age will not bring you independence, but I will joyfully keep you by my side as long as I am alive to hold your hand in mine.

Perhaps every year, I should be celebrating my birth day on yours. Your birth, your life, has sculpted me in ways I innocently, naively, could never have imagined. I dreamed of castles, an idyll, but was rewarded with something more elementary. I was reinvented at your birth. And now, after thirteen years of growth, I can say with certainty I need never have worried as I did then that I wouldn’t love you. Or as the seizures came, as the disappointments came, that I couldn’t love you. If there is one star that shines brightly, inextinguishable, in the dark and fathomless sky of our future, it is love.

Home

(was Grounded)

He says, “Home,” and we don’t know what it means. He says it when we are at home. He says it when we are all together, my son, husband, me, sitting on the sofa, around the TV. He says it when his grandparents visit and it confounds them. “Home.” We say, “We are home, honey.” It’s not the answer he wants. “Home.” “Yes, we are staying home,” we say, thinking maybe he doesn’t want to go anywhere. It is a Saturday so no school, no therapy sessions, no sitter. He can’t say those words, so maybe this is efficient shorthand for his desire. We could go shopping, we could go to the park, or to an event for special needs kids, which are almost always on Saturdays mornings, but we don’t because the weeks are jam-packed and maybe we all just need a break from trying so hard. Maybe that’s all he means: “Home.”

Maybe he is talking to me when he says, “Home.” I rarely am. After I drop him off at school—his still-small hand in mine, his weighty backpack stuffed with his feeding pump and supplies, some extra pull-ups, some lunch he won’t eat, slung over my shoulder as it’s too heavy for him with his weak torso and stumbly gait to carry—I drive to work and spend nine hours there, sometimes more, doing what needs to be done. After, I go to the gym, or to play tennis. Often I stop at the grocery store, run an errand, meet a friend. Sometimes I have a drink or two on Fridays. My husband or the sitters have cared for him since the end of the school day, 2:30. I am rarely home before 7:30 and his bedtime is at eight.

At 8 pm, I once again I wrap my hand around his, support him as he unfolds his stiff legs from his usual cross-legged position on the couch, walk with him to the bedroom. A nighttime pull-up—thank god he hasn’t yet outgrown the XL children’s size yet—, some warm clothes as his figure is so slight he is always cold, melatonin to help him fall asleep or he’d be up for hours like he has been his whole life, his brain waves misbehaving since the beginning, and he curls up with his favorite blanket, now almost thirteen years loved, and descends hesitantly into sleep. I realize I’m little more than a token mother by normal standards. But I will spend the next ten hours with him and with luck he won’t wake to know I’m there.

I climb into bed next to him because I still don’t trust that his seizures are truly under control. Even his most recent tests show the atypical activity is still happening and happens most obviously when he sleeps. The shark is in the water. It’s been almost three years since his last one but I am well-conditioned to believe it’s only a matter of time. Seizures do that to you, create an environment of unsafeness, a standard of alertness, not unlike expecting a bomb to go off. My therapist called it PTSD, but that seemed somehow like I was appropriating someone else’s holy terror. Yes, he’s had a seizure on a plane, causing it to turn around mid-flight and return to the airport. He’s had one in a hotel in a strange city and an emergency team stormed our room and rushed him to a strange hospital we struggled to locate. He’s had ones that turn him blue, ones that wouldn’t end despite medication, some ending in a call to 911 and the lights from a first-responder fire truck and the following ambulance lit our street and woke our neighbors in the middle of the night. “Those poor people,” I imagine they said to one another. “There by the grace of God go I,” I imagine they meant.

We stopped trying to vacation. We didn’t even trust a day trip to an unexplored town, or a nearby water park. It became hard to leave the house if we didn’t really have to. At least at home, the curtains hid the worst, and our brave smiles did the rest. But at the same time, it became harder for me to stay in it. The walls closed in. The doorways shrank. The air grew heavy. Being unable to help my child, to ensure his safety, did something to my pride, did something to me. I began looking sideways at life, never wanting to catch its eye in case it noticed me and lashed out again, master to servant, wolf to lamb.

For the first 17 years of my life, I lived in the same house on land that my father’s family had owned for 3 generations. From as early as I can remember, I wanted to be anywhere but there. Not that my home was unsafe; just that it wasn’t ever me. I’ve been restless when it comes to houses ever since.

Like any other 20-something, there were numerous apartments, but I’m always a little shocked to say aloud to someone that I’ve owned four houses. We bought our first when I got tired of living in other people’s properties. Duplex owners had worn me out. We had no savings, but started circling houses for sale in the local paper, before, I hate to say, the Internet was anything more than AOL dial-up. I had heard about a neighborhood where all the gays had moved: cheap and ripe for reinvention. I got pregnant while we lived in our starter house, painted baby-poop brown, which featured a tiny shed in the back yard that once housed the previous owners rideable train engine. I was sure we needed a bigger house since this one had two bedrooms on two different levels. We were starting a family: we were going to need space. Lucky for us the neighborhood had boomed and we sold the house for double what we’d bought it for.

The problem with selling a house in an in-demand neighborhood was that it sold quick, and we struggled to find the next house, the house my son would be born in. We bought a four-square on a busy street that had pocket doors and a dramatic stair-case up to the second floor. The backyard was expansive. I should have loved the house, but it felt dark with its deep mahogany woodwork, high ceilings, four bedrooms, and the start of the seizures.

In less than two years, we were walking around the neighborhood and saw a for-sale sign. Mark ran up the stairs and peaked into the house, while I waited on the sidewalk with Noah’s stroller. “You’re going to love this house,” he said. And we bought it, selling our cavernous turn of the century house for a small loss. Our new house was my dream house. A 1020s California bungalow gussied up by a previous owner who had also been a carpenter. Classic stained glass windows, built-ins, light woodwork, plus a high-end kitchen with granite countertops and a Bosch dishwasher. I was in love. But our needs outweighed what the house had to offer. The stairs made the house unsafe for Noah; cancer made the house a hospital. So again, we moved.

Last year we moved into a new house. It’s big, too big for a family of three. But there is space, in the rooms and in the halls. Space between us and the neighboring houses. Space between us and each other. Space akin to breath akin to hope. For the time being, we’ve left the memory of his many seizures behind, and they have yet to darken this doorstep. Cancer too, for that matter, though there is now room for a lodger. I fear they both will catch up with us before long so I keep moving, superstitious of getting too comfortable, of safety denied. Maybe if we don’t stay too long, they’ll lose our scent. Maybe if I don’t stay still too long, I can dodge weight of my choices.

“Home,” he says, but I don’t know what that means.

Hold

I love my son most when we are alone and he is quiet. I hold him–a heft and thickness to his limbs now that surprises me though I’ve watched him grow, inspected him even, twelve years now–against my chest and the ache of loving him burns through my center like I’ve downed a tequila shot and eaten the lime whole. I want to fold him back into my belly, return him to his point of origin. I could be his chrysalis. I could rebirth him and give him a chance. I could rebirth him and give myself another chance. It’s not romantic, but this special kind of motherhood rarely is. It’s pulsing blood in my jaw and nerves revealed only in the twitch of my eyelid. It’s still shit and drool and too-sharp nails and sometimes bites and lots of shame, and twelve years of tiredness that makes my body ache and all I can do is lay myself on the floor and wait to feel myself again. I’ve read that the center of a star is held together only by the force of its own gravity.

Examinations

 

(Revised)

 

I

The floors of the examination rooms at the Mayo Clinic were always cold. I kept my socks on until the very last moment. I stayed in the changing cubicle, behind the pale, printed curtain, soft and faded like a child’s favorite blanket that kept the dressing area cordoned off from the rest of the room, until the very last moment too.  Though that meant waiting until everyone had arrived and then pulling back the curtain to reveal my appearance with a screech and clatter as the metal rings scraped along the metal rod. Before advancing into the room, I had to stop and strip off my socks, my bare feet on the cold floor forming a memory that would last a lifetime. My mother and father sat on minimal metal and plastic chairs flush against one wall.  Lined up along the window across from them was the phalanx of doctors who would be examining me.

During the years I did not have surgery, I saw Dr. Peterson twice a year in an examination room on the 16th floor of the Mayo Clinic. During the years I did have surgery, I was there more often. He was the only recurring character during these nightmarish visits (except for the pale nurse who sat at the reception desk and looked like a model with her straight blond hair parted down the center.) An orthopedic surgeon, Dr. Peterson was, I knew, well-regarded, but I didn’t know at the time by whom or for what. All I knew was that ever since I could remember, my parents and I, and sometimes my brother before he was old enough to stay home alone, traveled ninety-minutes to Rochester from our farm near Austin to see him, specifically. To take my mind off the appointment, my parents challenged me to find as many different state license plates as I could in the parking ramp outside the clinic. I suppose it was a small comfort to know someone from Wyoming or New Hampshire had come all the way to Minnesota for help from a doctor like mine.

Mayo was exotic—I remember seeing a family in Indian dress and men in turbans and young girls in Mennonite prairie dresses and aprons for the first time there—and thus terrifying. Why was there something so wrong with me to warrant being a patient at such a place, a place to which people flew over oceans? But Dr. Peterson, everyone seemed confident, was the man for the job, the only doctor in the country, I believed then, who knew how to lengthen legs.

But with Dr. Peterson came that cadre of blue-clad interns and suit-wearing academics who stood behind my famous surgeon with the brown wing-tip shoes and half-moon glasses as he examined me from his perch on a rolling stool, all of them bent forward like vultures peering down on prey.  Each visit I would be introduced to the extra people who followed him into the room, but since I never saw any of them again, and none of them ever spoke directly to me beyond the initial greeting, I never bothered to identify them as people in so much as interlopers to this private exhibit that featured me as the main attraction.

Each exam was the same. I would exit the cubicle, my clothes folded on the wood-grain bench behind me, socks stacked on top, and walk out toward the adults in the room while wearing nothing but a hospital gown with two ties, one behind my neck, the other at my mid-back, and my own underwear. Presenting myself in the middle of the room, I silently waited for instruction. It seemed wrong to proceed without being told what to do, though my next moves were as well known to me as practiced as a dancer’s choreography.

Standing in front of Dr. Peterson, he would take my shoulders and turn me away from him. Then he would open the tie at the middle of my back, take both sides of the gown and drop them off my shoulders, letting it hang down in front of me like a column of cloth so most of my body was bare. I would stand stock-still, unable to move, like Lot’s wife after she looked. Not just because I was nearly naked in front of a group of strangers, but also because allowing this examination, standing still and being studied like some insect pinned to a display board, filled me with a paralyzing anxiety that flooded through my body like ice water and made me near unresponsive. Never did it feel like this was a normal sequence in the life of a normal kid, no matter my age: undress, be instructed, be examined, submit.

All the fight had been drained out of me already in the crying and pleading arguments I had with my unwavering parents that began the day my mother reminded me of the appointment, escalated the night before, and continued through the glass doors of Mayo’s main entrance, its rotating doors sucking me in like a vacuum, summoning me against my will. I did not want to do this, come to this place, and I wanted to be heard.

But I also wanted my parents to say I didn’t have to go. But they never did. Instead, they made bargains. If I just calmed down, we would stop at Perkins for onion rings and a Pepsi, or maybe Long John Silvers. (Austin only had a McDonalds.) They bought me word find and invisible ink puzzle books from the gift shop. Regardless, by then, I had exhausted my resources and could do nothing more than behave.

 

When Dr. Peterson said, walk across the room, I did. Turn and walk back, he’d say, and I would. Stop there, and he would roll closer to me, place his hands on my hips, push and knead, then rotate me and repeat, while I stood with a kind of anxious static in my ears, drowning out thoughts. As I got older and heavier, the fear turned into humiliation, bitter like salt, filling me up with solidifying tears.

Turn and bend at the waist, he would say. And I turned, and bent, and felt every pair of eyes in the room studying my bare back, my cotton-covered hips, my bare legs. Sometimes he took the waistband of my underwear and rolled it under to expose more of my back, looking for the telltale curve of scoliosis. The rest of the exam was performed on the table. I was measured, stretched, compared. The x-rays taken earlier in the day were hung on lighted screens: there I was. My bones, the shadow of my bulk, the unevenness in my legs. There I was, more real than I was in my own live body, and I wanted to own none of me.

I was rarely spoken to. Throughout the examination there was murmuring, but I was the topic of conversation. Dr. Peterson led the discussion, and each member of the group took turns describing his (and rarely her) observations, would utter short fragments of knowledge with conviction, and sometimes offer me a faint close-mouthed smile. But all I heard, as I stood there, sat there, walked there, bent there, laid there, was one word said repeatedly, discrepancy.

Discrepancy. I heard that term used to describe my body year after year, visit after visit. My left leg, as a result of a bone infection before I was born, did not grow as quickly as my right. Everything about my left side from the hip down was smaller, shorter: discrepant. A factual word, not meant as an insult by any of those who uttered it in my vicinity, describing my leg, not me. But when I heard it time and time again, the word clearly indicated I was faulty, inadequate, abnormal.

 

Dr. Peterson performed two complicated surgeries on my legs. The first—so rare that another girl who had the same surgery done appeared on the TV show, That’s Incredible!—was done when I was in third grade and I spent five weeks in the hospital, missing friends as well as missing all the lessons on how to do long division. A foot-long metal apparatus was attached parallel to my leg via four screws that punctured my skin and were anchored to my femur bone, which had been cut in half at the middle. At the end of the apparatus was a dial.

Each day, Dr. Peterson arrived at my hospital room during rounds and turned the dial the barest of millimeters because more would cause too much strain on my muscles and skin. Millimeter by millimeter, for five weeks, my left leg was stretched until my legs were of equal length. Then a measure of hip bone was inserted into the made gap, a strip of metal attached to secure the pieces together, and finally, a body cast molded over me from my toes to around my ribcage to keep me immobile through my tenth summer.

For many days, blood and fluid seeped out of the holes in my skin made by the protruding screws, dampening the absorbent blue sheets the nurses lay underneath me on the bed. When they were soaked and finally removed, they smelled like raw hamburger. Sometimes there was too much fluid and it was suctioned out. Any place they inserted an IV quickly got painful, so it was moved around my hands so often they appeared to have chicken pox due to the scabs. I bathed out of a pan, and peed into a different one. I was checked for bedsores.

When I was released, I wore a body cast from ribcage to the toes on my left foot. I was good at using my crutches and raced my classmates along the school hallways. When the cast was removed, my leg had shriveled, but the lengths of my legs were close to even. I got to wear sandals and tennis shoes. I didn’t suddenly improve at kickball and still ended up near the end of the line in gym class, but I was rid of the awkward, clompy gait that elicited stares as I shopped at the mall. But it didn’t last long, because, again, as I grew, my left leg again lagged behind.  At seventeen, once my body had completed most of its growth, the second surgery was done. Dr. Peterson spoke of medical progress, said they’d long since moved past that slow dial-turning surgery I’d had the first time around. This one would have me out of the hospital in three days.

To prepare for that last surgery, a series of pictures were taken of me so the doctors could determine their surgical plan. After so many years of the same surgery preparation, this process was new to me. For these photos, I was to stand, wearing only the bra I had arrived in, and a pair of provided underwear—triangles of crinkly blue paper connected around the hips with bare elastic that I struggled to pull on because I could no longer wear the largest youth size and I was too embarrassed to ask for something larger—and submit to being photographed from every angle.

I stood passively against the white backdrop, horrified at having to expose so much of my discrepant teenage self, as the man stood behind his camera and snapped, snapped, snapped at the captured moth I surely was.  I quickly looked away when these pictures were hung up during my exam, studied by the tidy Dr. Peterson and the half-circle of people standing behind him. These pictures were not in the anonymous black and white of x-rays, where one’s size is just a hint, a shadow, but in two-dimensional color, flooded unflatteringly with fluorescence. Those pictures were more than an examination; they were a record of my flaws.

After the surgery, I was out of the hospital three days later, this time with no casts, just crutches, and puzzle pieces for legs. This time, they had sawed both of my femur bones in half, took one and one-half inches of bone from my right leg and spliced it into my left. A metal rod was inserted from incisions at the top of each of my hips all the way down through the marrow of my bones. I woke from the surgery with an IV conveying morphine into my arm.  The morphine burned when it traveled from needle to vein, and it quickly became difficult to decide whether my leg pain was strong enough to justify the arm pain from a self-administered dose. The next day I found myself in the PT room, encouraged to walk on two broken legs by a physical therapist I fought against, raving, because I couldn’t believe anyone had the right to make me walk on two broken legs.

I was deconstructed again and again in those exam rooms at Mayo Clinic, then physically reconstructed twice over my lifetime, knitted together well enough to resemble someone whole, yet not at all whole.

 

II

I take my son for exams by the specialists at Children’s Hospital in Milwaukee, where he is undressed, inspected head to toe. The rooms are small, white and well-lit with floor-to-ceiling windows, the light muted by vertical blinds. During this particular visit, a geneticist takes each one of Noah’s fingers and examines the nails, the width of his knuckles, the flexation in his joints, to look for signs of a genetic disorder that might explain his eclectic constellation of symptoms. They judge the distance between his eyes, his hairline, the length of his feet, the feel of his scrotum, the roof of his mouth, the shape of his ears, looking for abnormalities. They find nothing out of the ordinary, no dysmorphic features to point them down a particular genetic path. But that simply makes the mystery of Noah’s seizure disorder and delayed development more perplexing rather than less.

The first six months of Noah’s life had been relatively normal. While he hadn’t been the most mobile baby before birth, and he seemed to have some hyper-reflexes as an infant, only the fact that his eyes never quite aligned as babies’ eyes do soon after birth, gave us any hint of a disorder, a fairly common and fixable one at that. Slowly I came to realize, by watching other babies and watching him, that he was significantly different.

I saw that Noah did not reach up and out to play with the small animals hanging from his car seat handle like other babies did. He couldn’t sleep for more than two hours at a time no matter which magic formula we tried; we even set up a video camera to record in the night, hoping for some hint of what was waking him. And he couldn’t hold himself up on his elbows at three months. The photographer at Sears had to stuff his arms underneath him like he was a rag doll for us to get a picture of him looking up into the camera.  You could tell that she knew there was something different about Noah too. I saw these things, all the signs that my good efforts—losing weight, the prenatal vitamins, the weekly doctor’s appointments, giving up sushi and lunch meat—had guaranteed nothing. I had been naïve to think I had earned special treatment from the universe. Unfortunately fate is not a meritocracy.

At the end of his first year, we waited in a different examination room for our first visit to a neurologist, after Noah had had his first three seizures and missed more milestones than he had met. I held my one-year-old son who had no idea, yet, that being examined was anything different from being adored. I was afraid, not only of the news we might hear about our child, but because I could feel a tingle of subordination playing around the edges of my already-frayed strength. I remembered too clearly being a mere scientific conundrum to the doctors who examined me, and I feared being reduced to the frightened child I had been, instead of holding myself together and being the mother I knew I needed to be.

That day I was grateful when the neurologist walked casually into the room, looked my son over head-to-toe, and pronounced, with contagious positivity: “That’s a good-looking kid you’ve got there.” He went on to say that he’d been doing this for twenty-five years and could tell the really severe cases just by looking at the child, so we really shouldn’t worry too much. For some time after that visit, I hoped that Noah would be one of the lucky ones. I needed to hope, so I did, until the seizures took that hope away.

At each visit to each new doctor, we must reconstruct Noah’s life so far. We reveal our family histories, or, because I am adopted, what there is of mine. I tell the story of my pregnancy, of his birth, of his first days. I tell people that my pregnancy and Noah’s birth were uneventful, but it feels like a lie. I shrug when I say it, like it was all no big deal; but to give birth is the biggest deal, regardless of the child.

I am thankful that Noah will not remember all those rapid-fire appointments, one after another—emergency room, doctor, CAT scan, neurologist, EEG, emergency room, allergist, neurologist, MRI, geneticist, orthopedist, and so on—but of course, that will not always be the case. These kinds of visits to specialists will not end, because the question of why Noah is the way Noah is seems unlikely to be answered since we have done every test science can offer us and received no revelatory results. I fear that the older he gets, the more risk there is that he will face the same deconstruction of self that I withstood as doctors visually dissected me during all those years of my own gauntlet-walking. Every day, in the eyes of so many, my son is different, less than, rather than valued as singular, incomparable.

 

Though I am his mother, I am no different than anyone else who looks at Noah and sees “other.” I have been forced—by love but more so by an instinct for sanity—to forgive his flaws in a way that I could never learn to forgive my own. I have made peace with the part of me that was so bitterly disappointed that she would spend her child’s childhood in doctors’ offices because she spent her own in them. I have humbled myself in the face of this great responsibility, come to realize that his life is not about me, only about him. I have learned to ignore the unconscionable inner voice that perseverates over whether this faulty mother simply gave birth to a faulty child.

The burden of parenting Noah is suffocating because there is no shrugging off the tough stuff. Taking Noah to his appointments breaks my heart each time. He cries, repeating, “done, done” with frantic sign language and abbreviated vocalizations, before we’ve even gone through the doors of the clinic. I cajole, and I demand, and sometimes I let the nurses take over despite his plaintive, “Mama? Mama?” because I am at a loss as to how to force my child to do these things he fears. I too want to say, “done,” and spirit him away to some remote cabin in the woods in some other time where there are no constraints, no obligations, no expectations, a fantasy world.

My parents must have felt the same anguish at each of my appointments. What I saw then as their lack of compassion was no doubt resoluteness, knowing that what they were making me do was in my best interest despite my dramatic protestations. The lesson is not lost on me, and if my parents were alive, I would thank them for being just as brave as they needed to be.

It’s been nearly fifteen years since I saw any doctor about my legs. I still have a metal rod in my left femur, and I still have some sensitivity and lack of strength on that side. But I’ve held together this long, and it will take a significant setback to force me back to an orthopedic specialist. The time will come, I imagine, as age creeps up and my bones break down, for me to be examined again. In the meantime, I count my blessings that I can run, I can walk, I can carry my son. In fact, except for some truths revealed by the scars on my legs and a slight limp when I am especially tired, I might even come off as what I so desired as a child: normal.

There is little about Noah that appears normal now. As he has grown, his oddities have become more obvious. As a toddler, he could be carried; there was no wonky gait to expose him as different. Now, when he walks across a room or an aisle in the grocery store, no matter how slowly, he will inevitably run into something that was not actually in his way. Such is ataxia. I hold onto the back of his collar, gently so he barely notices, to guide him when he veers too far off the path.

The doctors don’t bother showing us the results of his EEGS any more. They have told us time and again that the abnormal brain activity doesn’t tell them anything definitive. Unlike my body, my son’s doesn’t offer options for surgical intervention. We medicate, we prevaricate. The specialists offer us a collective shrug.

Noah has all ten fingers and toes, but he cannot use them dexterously.  Putting a train car on a toy track is an exercise in frustration. Scooping food onto a spoon is a hit or miss proposition; getting the food to his mouth the same. He loves to color, but his squiggles are just squiggles to anyone’s eye but his. He can kick a ball, but will most likely fall on the ground with the ball only inches away. He can have a conversation with me through his few words, sounds and gestures, but few others understand his mixed bag of approximations. Noah loves the things normal little boys love: trains, trucks, dogs, swimming, sandpits, books; but, at seven, the version of these things he plays with better suits a three-year-old. At twelve, he is much the same.

It has taken me years to see my son as more than the sum of his discrepancies. When I look at his baby pictures—all of us so innocent that I feel slightly sickened by our naiveté—in photo albums, or hold his arms down tight as his head is wrapped in gauze to hold tight a plethora of electrodes glued to his head so that specialists can examine what happens in his misbehaving brain, or watch him as he runs excitedly, but so awkwardly, across the grass expanse that circles the local playground, knowing he is being stared at by children and parents alike, I struggle to quiet the child in me who still fears being different, who took the blame for the things that made her different from everyone else.

Noah is not the child I imagined I would raise, and oh have I mourned that child—the one not made up of flesh and blood, but made up of expectations. So each day, I perform an examination on my own heart. When I push past the guilt and the blame and the fear, I sometimes locate the strength I built up to survive those surgeries, those stares, the study of my body, and I think I just might have enough to pass some on to my son too.

Hysteria

I lift heavy weights because I can no longer lift my son. I’ve grown stronger over the past year: my quads have a stone-like quality under the skin and fat. I think of myself as an ice cream cake. Hard center, soft exterior. I enjoy the bulge in my bicep. I like to flex and find the crease between bicep and deltoid. But I still cannot lift him. I work at the gym for a month or more and I injure myself. Elbow, wrist, knee, back, and have to pull back my training for awhile until that injured part of my body heals, and then it’s up the hill again. But I still can’t lift him. He is now 100 pounds which is a lot but still little, and yet like the proverbial sack of potatoes, N doesn’t know how to use his own body to help me. I think of figure skating pairs, the man lifts the woman, but it is the woman’s core, the woman’s complimentary tensity, that assists in the lift and lightens the man’s load. N just hangs, an armful of wet towels. There isn’t one moment of hysteria; it’s a slow drip of hand-numbing anxiety: this could be it. No matter how hard I train, how strong I become, I might never be able to lift him again.

And again I can see her on the distant shore, the maybe other me who might decide not to feed her son in order to keep him small, in order to deny him a growing body because his mind does not keep apace. She thinks of him as a baby, she thinks of him as a toddler, she thinks of him even last year when he was eleven, when she could still lift him. No, that’s not right: she wishes for him to be again eleven. Is this empathy for the woman who tosses her child off a bridge, or the man who engages a shotgun to keep the future from ever arriving for his child and then himself? Is my fear of the future and my inability to keep lifting my spirits, my hope, just hysteria? There was a time when it was still ok for him to go and play on the playground, because he was small. There was a time when it was still ok for him to climb into a shopping cart and ride instead of walk. He is small for his age, but it is only a matter of time until he is taller, thicker than she is, stronger, and she fears that’s when the hyena she hides will burst from behind her hyoid and devour all hope. She is certain that when he is 14 and 17 and 22, he will still want to play on the playground, ride in a shopping cart: it makes her sick how his world will get smaller as he grows, it makes her pulse with a keening need to keep him to stay small. For there to be symbiosis between his mind and his body. She is a mother who might do whatever it takes to stop time.

So instead I try to grow. The longer I can lift him, the longer he can stay little, and there is little chance I will become her.

Void

It is dinnertime and we have just arrived home from the grocery store. While M empties the grocery bags and I prepare the chicken, N is occupying himself by opening and closing the storage drawer beneath the oven. When we hear a thump, we both look down and he is lying prone on his back like a turtle flipped on its shell. This happens occasionally. When he just loses control of himself and falls backward. He still isn’t always good at sitting even though he’s 2. But he usually cries or laughs, depending on how hard he bumped his head. He’s regrettably used to pain. This time, he is just lying there, stiff, and his eyes are rolled up half under his lids. It is a seizure again, out of nowhere, here when we were doing normal so well. We move N to the living room couch, his head tipped to the right side as it does, a sign perhaps of where the storm brews in his brain. His limbs jerk and his throat throbs with work and foam collects on his lips. Mark sings. I kneel down beside him and kiss his cheek. Wipe his mouth. Watch for breath. This time, his lips are not turning blue. At five minutes, we medicate him. It’s what we’ve been told to do. We do what we’re told. We wait for the sedative to break the seizure’s spell. Don’t think, I tell myself. Don’t you dare feel a thing.