To Swim is to Fly

Many years later, Cindi Peterson and her husband would buy up what remained of my father’s acreage when he died in considerable debt and my brother and I couldn’t afford to keep the farmland or the homestead that had been our family’s for three generations. The Peterson’s had tended the land for years and paid out a percentage to our family, and I now realize that must have been the little bit extra that kept us afloat, if afloat is what you call it. But when I was a little girl, Cindi Peterson tried with great tenderness and persistence to teach me to swim.

There are grainy 1970s photos of my brother and me at the Northwood swimming pool either before or after our swim lessons with Cindi. I was usually in the kiddie end, sitting on the shallow steps or holding onto the edge grinning up at my mother as she took pictures with our brownie camera. My brother was usually a bit deeper in, swimming away, but still looking at Mom, he and me still young enough to be playmates. Other pictures star Cindi. I say “star” because she had charisma, a certain 70s housewife cum pinup look that made you look.

I thought Cindi was a bombshell for all I knew about bombshells at that age. Perhaps I’d started watching Charlie’s Angels by that time so I thought Cindi had a kind of Minnesota farm version of the Farrah Fawcett brand. Except Cindi was large. Her arms and legs and torso were round but not at all flabby. Her bosom (because it seems completely accurate to describe her swell of breasts as a bosom) strained against the low curved neckline of her white swimsuit. And she was tan, the color of a gleaming chestnut-coated horse. The depth of her tan made the white of her swimsuit glow in the shimmering blue pool water, and her white blond hair, waved and feathered, sat atop her head like a dollop of whipped cream tops off a luscious dessert.

At least that’s how I remember Cindi. It sounds romantic, I know. But she was so very different from my mother. My mother who wore pantsuits and owned but didn’t wear a swimsuit. I had found it once in a hallway drawer where she kept table linens and embroidered handkerchiefs, the kinds of items you kept but never used. If I reach all the way back into my memory, or the memory that looking at old photographs imprint on us, I think she may have worn it once, at a lake, on a family vacation when us kids were very young? It was yellow and gold floral and made from a heavy, plastic-y fabric. I think it had a bit of a skirt. And even when I’d discovered it, in a drawer amid tablecloths and guest towels, it seemed to have no utility. I don’t remember her ever joining us to swim in the pool. My mother had had diabetes from a very young age, and was very careful about exposing her feet in sandals and never didn’t wear shoes, for fear of injury because she couldn’t feel her feet well. But I don’t think I remember her ever going fishing with us when we took those family vacations at Leech Lake either, siting in the boat as we threaded worms onto hooks and learned the difference between walleyes, northerns, and bullheads. While she never said she was afraid of the water, now I wonder why she herself didn’t teach us to swim.

That was left to Cindi, the neighbor lady who gave kids from the area lessons. I remember how she tried to coax me to trust the water. As with most things, my brother had no issues with swimming. He would soon pass the test that allowed him under the ropes and buoys and into the deep end. Soon some of the neighbor boys would come with us to the pool, and while my brother and his friends wrestled in the water like puppies, I laid my head back against Cindi’s bosom as her hands supported my hips to suspend my little body perpendicular to hers. But the minute she removed her hands, I went from being on top of the water one second to piking down in fear the next, wanting my feet touching the bottom of the pool. Or if the water was too deep, I flailed at her, grabbing at her taut, tan skin for purchase, holding her close. Floating was simply something I could not do. Cindi taught me a lot about the water the way any teacher starts with the ABCs — I learned how to blow bubbles, tread water, how to kick while holding onto the wall, and then how to use a kickboard and leave the wall behind. But she was never able to teach me how to use the water to suspend my body when she wasn’t there to assist.

I have never been afraid of the water, so those early lessons accomplished that at least. I’ve never not wanted to don my suit and jump in on a hot day. Or take a boat ride. I could jump off a dock at our cousin’s cabin, do a front flip at pool, and even perform a handstand of sorts, because those moves only required me to hold my breath a few seconds, mouth closed, nose pinched. But I could never just float. Or so what we called the American crawl well enough to pass the deep end test. And I certainly never got up the courage to dive in head first, or even jump off a diving board. Except that one time when I was a preteen and a camp counselor and the long line of kids standing on the ladder behind me forced me to jump and I still remember feeling like I would never rise to the surface.

Swimming is just the start of it, a thing I can almost do. I have never ice skated or ski-ed or even slid barefooted across a wet floor like my brother and his friends did when my mother washed the kitchen linoleum. Having to give up control or lacking faith in my body to react, to stabilize me when met with unpredictable physical influences of water or speed or slickness, has always been…an impossibility. There are other things I’ve always been afraid of. Heights is one. Bridges is another. Singing in front of a crowd, or anyone. Asking for want I need. Or what I want. Because I’m afraid the act of asking is the same as admitting weakness. And now that I’m older, middle-aged at best, I’ve grown afraid of my body in a different way. Once I was afraid my body would embarrass me, that it would get injured; now I’m afraid of how my body will communicate to me that I am dying, soon to be out of the time I need to stop being so afraid.

It was probably 1981 or 82 when I had my first major surgery to correct a length discrepancy in my left leg compared to my right. Physical therapy wasn’t as accepted as necessary for healing that it is now, but my mother must have talked with Cindi and come to an agreement. By then, Cindi had an above-ground pool on their farm, their driveway about a 1/2 mile down the gravel road from our driveway. So I spent a couple of visits to Cindi’s pool, not swimming but walking slowly through the water, using its resistance to strengthen my weakened leg. But our relationship had changed. I was awkward around Cindi now, much like I had become awkward in so many situations. Despite an open invitation to use the pool any time after those first instructional visits, I didn’t go back.

Thirty years later, when we were preparing to sell my father’s farm, I still thought fondly of Cindi when I thought of her at all. I knew the rumors. People said she’d gotten nasty. That she dictated the terms of their family life and her husband was no more than a pawn to her demands. People said she carried around a shotgun, and sometimes, ironically, shot it at trespassing hunters. I seem to remember Cindi coming to my mother’s funeral when I was 12. And then my father’s — no, that seems impossible, but surely she would have? — about a decade ago. She must be, what, 70 by now? But Cindi with her white-blond hair and white-white suit and beautifully browned body is how I think of her, and I think of her often now because we take my son to the pool whenever we can. He loves the water. So when I get a whiff of that signature scent of chlorine and suntan lotion that makes you feel 6 year old again, I think of Cindi. And I bet all those rumors about her are untrue. She may have done all of those things, but those rumors have the scent of “who does that woman think she is?” rather than a woman gone rouge.

For years, I just let my husband, Mark, take our to the pool. But when he was a year or two old, I enrolled Noah is a baby class at the frigid pool of the neighborhood high school. It’s what you did when you wanted to be a good mother who could check off another line on the long list of things good mothers do. Teach your child early not to be afraid of the water. Babies, we were told, instinctively knew to hold their breath underwater. And Noah certainly did. The pool was so exciting for him. He held his breath; he kicked his legs. He splashed his hands against the surface of the water with an energy that he didn’t use for much else. He didn’t reach up to play with the tiny stuffed fish we hung from the handle of his car seat. Instead of stacking wooden blocks on the tray of his high chair, he just pushed the blocks off onto the floor. We already knew he had “low tone” — that’s what the internet called it when I searched for why he wasn’t able to hold his head up and balance on his little elbows like every baby did for their first mall photo shoot. The photographer had to roll a small washcloth under his chest to lift him up enough to look like he was looking toward the camera. And we knew he wasn’t meeting milestones. But some kids didn’t, I was told. And often baby boys didn’t. So I tried to be the kind of mother every other mother I knew tried to be: a good mother who put her worry aside and took her baby to the pool.

Soon Noah’s love of water — pool, bath water, play table, sprinkler, fountain, hose — irritated me. Not because I begrudged him his joy, but because it was a sign. Autistic children, children with a diagnosis, loved water. They loved water, they loved lights, they love to put toys in rows, they love to make things roll and fall. I watched Noah like a hawk. How many more signs would there be that there was something wrong with him? Every cute thing he did that someone might comment on, “Doesn’t he just love the water?” for example, made me sad. As the months went by and the other babies we knew added skill after skill, all anyone could really say about Noah was, “Doesn’t he just love the water?” One afternoon after our swim class, I was carrying Noah across the cement locker room floor after rinsing ourselves off under the showers, and I slipped. I fell awkwardly because I rearranged my body to protect his. We were both fine, but I hated slipping. I hated feeling out of control. And I hated that Noah had been in danger. It would be the last time I took Noah to the pool by myself, and Mark, who loves the water anyway, became the default swim parent.

Until Mark got leukemia, that is. During Mark’s initial treatment, there wasn’t much call to take Noah to the pool. Mark got sick in July that year, underwent numerous rounds of chemotherapy, and had his transplant six months later. Friends or sitters would take Noah, who was ten, to the wading pool while I was at work, but there wasn’t time to do much beyond holding our lives together that winter. One of the more terrible side effects for Mark of having leukemia and getting a life-saving stem cell transplant is that he has to continue, even in remission, even if he becomes technically cured, to try to lighten the burden on his immune system. With that consideration, Mark stopped teaching. And with that consideration, Mark had to stop swimming.

But that didn’t mean that good mothers don’t do the right thing, even if they hate swimming, so I once again enrolled Noah in swim classes. These classes were adaptive swim classes, and I had had ten years to get used to life, however reluctantly, with a special needs child. The woman who taught this class was large. Unlike Cindi (though her name was also Cindy), her skin sagged low off the bone, and her suit, a muddled floral top with a muddled purple skirt, amplified her pale skin in the pale light of the middle school pool. Because Cindy had other students, and Noah was unable to be safe in the water without assistance, I got in the water with him. And that was fine. He wore a safety belt and was buoyed by the water, and I had my feet on the ground. I could lead him through the exercises, Cindy showed to us while she worked with the other kids. But the other kids, they were skilled enough to practice by moving up and down the length of the pool no matter how slowly. Cindy wanted us to do the same. And so did Noah. And I … was too prideful to limit us only to where my toes touched. In five feet of water, my five foot three inch self could just keep my chin above the surface. Beyond that, I would not only have to guide Noah through his exercises, but at the same time, I would have to keep myself afloat.

Much like when I was a child, I could manage to tread water for a short amount of time. And since, when staying in hotels or even going to the local pool with Mark and Noah, I had been very willing to get in the water, even doing a sort of dogpaddle/applebasket stroke that mimicked swimming, could take me from one side of a pool to the other, and most importantly, keep my head above the water. But problems arose as we moved into deeper water. The pool depth went to twelve feet, so getting to the five foot mark wasn’t even half way down to where Cindy laid out all of the practice gear like kickboards and tubes. Also, twelve feet was where Noah wanted to go too. Noah’s love of water had continued to grow as he did, and his very favorite thing to do is to jump off the side of a pool into deep water. He loves to feel the impact of the water, hold his breath until he comes to the surface. He practices holding his breath in the bathtub, able to push his face beneath the bubbles and hold it there for nearly 15 seconds. But what the hell was I going to do once I couldn’t touch the bottom of the pool? Keeping myself afloat was one thing, keeping Noah afloat so he didn’t have to hold his breath beyond 15 seconds.

We would stay near the side of the pool. I would be able to grab onto the edge with my left hand, while assisting Noah with my dominant right. If he started to swim too far away from me, I could grab onto his flotation belt and drag him back with me to the wall. It was inefficient, but we managed. It was exhausting, but at the end of every class I felt more deeply connected to Noah. I had helped him do something he loved, while we held on to each other doing it. Cindy was there to rescue us if I couldn’t manage, but I was managing. Eventually I began to take Noah to the recreational pools my myself. We rarely ranged beyond five feet, but that was deep enough for me help him get up out of the pool and jump back in. Over and over. Then we would ‘swim’ to the toddler depth and back, practicing what we learned from Cindy. A few times we pushed our limits, but the minute I felt unsafe, I would tense up, maybe swallow some water, and I simply became scared.

One of the ways I’ve learned to cope with my anxiety — an anxiety that I’ve described to my doctor, my therapist, my friends, as feeling like I’m in a closed room that is filling up with water, and there is only an inch or two between the surface of the water and the ceiling from which to draw a breath, and I’m so, so tired of trying –, whether that’s anxiety due to having a disabled child or simply being me with my brain in my body, is by being brave. Being scared comes naturally to me. I’ve been scared since I was a child. I was scared when I had surgery. I was scared of my body. I was scared when my mother got sick, I was scared of her body. I was scared when Noah started having seizures. I was scared of his body. (Let’s face it, I still am. At 14, his body is doing all sorts of crazy things I’m not convinced I signed up for; and at 48, my body is doing all sorts of crazy things that are at best a nuisance, and at worst, a reminder of my mortality. I have always been scared off all the things that could hurt us, internal or external. So now, within reason, I do things that scare me. I’m not talking about bungy jumping or even roller coaster riding. But I try to show up. I have tattooed “Be brave” on my forearm to keep me honest.

To confront my childhood fear of singing in public, I now give work speeches in front of groups. To work on my fear of failure and rejection, I submit my writing to magazines and agents. I have even cooperated with my fear of heights by taking a trapeze lesson. (I did it, and don’t ever need to do it again.) I recently declined a sunset flight in a two-seater airplane with my friend’s husband for a pilot, and the next day I regretted saying no. I can’t say for certain I would say yes should that opportunity be offered again, because I can’t imagine calling Mark and Noah and saying, just so you know, I’m taking a huge risk with my life and I apologize if I don’t come back. But I’m kind of proud of myself for even thinking I should have said yes.

And I can credit all sorts of things for why I am able now to take risks that, as a child, I shrank from. But I have Noah to thank for valuing bravery rather than prioritizing my fear. Every day that he had a seizure and we had to pick up the pieces of our lives and pretend we hadn’t just had a bomb set off in our home, I learned to be brave. Every doctor’s appointment when some test could tell us some very bad news about our son’s future, I had to be brave. Every time I had to hold him down for a procedure, I had to tuck my fear away. And when I think of this young man, now fourteen, with the cognitive and physical abilities of a toddler and confront the depth of my love for him but also my deep sadness over his unrealized potential — which is every.damn.day — I have to be brave. I owe my bravery to Noah, and I try to show up for him even when I want nothing more than to hide.

Which explains why, this past Fourth of July, I got it in my head that Noah and I should go tubing on his grandparent’s lake. Mark’s sister and her family kept their motorboat docked there and Noah’s cousin, just 6 months older than he, wanted to take a large inflatable “chair” out on the water. Despite Mark’s parents having lived on the lake for years now, we rarely went out on it, and we never swam in it. And that’s often a point of contention between Mark and I — Noah loves the water, so why can’t he swim in the lake? Of course, in my heart, I know why. Noah can hold his breath and such, but he also swallows a lot of water and doesn’t really recognize when something is dangerous, so he could step on a sharp rock, hit his head on the dock, eat lake weeds, what have you. But! In the name of bravery, and fairness, and not acquiescing — I said, Noah and I want to go tubing as well!

Tubing is a thing I have never done. Water skiing is a thing I have tried once as a kid, got dragged on my face after never truly standing up, and never tried again. Boats are fine for fishing out of, but I’ve never driven one so know little about the physics. I’m even a little awkward wiggling myself onto a circular floatie in order to just sit on one. But this big seated “tube” tied to the back of the boat? I’m sure we can do that. And, I think, everyone must have thought I knew what I was doing rather than just being brave, because no one gave us instructions and I assumed that being towed was just like floating on the water but at a faster clip.

After stuffing ourselves into safety jackets, Noah and I got settled onto the tube. I noted that there were no seatbelts likes on a carnival ride. Which, of course. Being belted into something that could capsize would be a very bad idea. I found the handholds, so that reassured me. But Noah doesn’t have the strength or occupational skills to hold onto a handle, so much like during his swimming lessons I held onto the edge of the pool with one hand, and Noah’s flotation belt with the other, I grabbed a handhold with my right hand to stabalize us, and Noah’s safety vest with the other. The first slow lengths as the boat pulled away from the dock seemed to indicate this ride would be a pleasure cruise. But as my brother-in-law picked up speed, the “chair” began to tip backward. I was unaware that this was par for the course. That we couldn’t just toodle along on the water at a slightly quick pace but instead we had to pick up speed in order to even out the raft and regain a horizontal position on the surface of the water. But unlike at the pool, Noah’s weight, now around 100 lbs was not buoyed by the water, but instead being pushed and pulled by centrifugal force. And that’s not even considering how I needed to manage my own weight which as about twice his.

What seems critical now — now that we’ve survived this trip around the lake that I will never volunteer us for again — is an understanding of the handsignals. While my brother in law drove the boat, my sister in law kept an eye on Noah and me. But she was also, in addition to our safety, interested in us having a good time. And for most people, having a good time when being towed by a boat is to go fast. The handsignal to go faster is a thumbs up. I assumed a thumbs up was an agreement that we were, at the speed we were at, in the current situation which really felt like a bad situation by the time we were too far to turn back, doing ok. So every time she gave us a thumbs up, I gave her one back. Which translated into, doing well, but let’s crank it up a notch. The faster we went the tighter I held on. (Again, science isn’t really my thing, so probably if I had relaxed, we’d never have been at a risk for being thrown off, but I couldn’t tell my brain in it’s panicked state that.) The faster we went, the more upright we could sit, but the more Noah slid into me until I thought we might get pushed off the side when the boat turned. And despite my stubbornness, and my inability to admit when I’m out of my depth, I eventually let go of the handhold long enough to drag a finger across my neck giving my most clear handsignal that I was done that I could.

Obviously we made it back to the dock. Noah and I played in the water a bit before we all went up to the house to bathe. My right forearm was so sore I could barely flex my wrist. My abs were so tired from trying to stablize us my ribs ached. As we walked to the house, Mark helping Noah navigate the steps, I admitted to all of my misconceptions and fears. He said, “Yep, that’s how I felt too.” Incredulous, I asked, “What? You’ve taken Noah tubing before?” “Last summer,” he said. “That’s why I didn’t want to do it again.” And of course I was put out. “Why didn’t you warn me?” I wanted to ask. But we were on dry land, safe, Noah had had an experience, and…I had been brave.

***

Tonight at my swim lesson, my trainer, Melissa, taught me how to do the breast stroke. For the past two weeks since I’d transferred to this new gym and requested a swim coach, we’ve worked on the basics of breathing while doing the freestyle (aka, that old American crawl.) The coordination of all of the elements it takes to swim freestyle laps correctly is still many of hours of practice away. I get it but I’m also easily distracted and when my mind wanders, so does my technique, and I either lose my bearings or end up with a mouthful of water. The reality of swimming is and always will be — unless you pay attention, you can choke or flounder or even drown.

My form while doing the breast stroke is ridiculously awkward, and I have to be careful not to laugh so as not to get water up my nose. The frog legs and the arm pull and then the “glide” … well, it’s easy to get off the beat like when Baby is first learning the merengue with Johnny in Dirty Dancing and she keeps stepping on his foot. But when I hit a groove for maybe five to ten yards, the exhalation of the breath underwater comes naturally to me and I’m hopeful that with practice I can not only complete an entire length of the pool while doing the breast stroke, but do it gracefully. Swimming feels like dance when you are doing it right. It’s effortful yet liberating.

But there is something else about swimming that distinguishes it from other physical activities. It’s the buoyancy of the water and the way you can speed up if only you relax. It’s the balance between tension and release. The years, they have begun to weigh on me. And I get tired sometimes of holding up my head and trying to draw breath. But I have learned, or at least I am learning, acceptance. I cannot change who Noah is, and to needlessly bang my head against the wall of our reality is futile. I cannot change anything about the past that led us here. And accepting him isn’t capitulation as I feared for so long. It just means you direct your energies in the right place instead of wasting your effort. Swimming is about maximizing your movements and not doing more than you have to. The more you push, the more rigid your body, the more rushed your motions. You simply have to work with the water, not against it.

When I explained to Melissa why, at 48, I wanted to take swimming lessons, despite being a “recreational” swimmer, I told her the story of tubing earlier in the year. That’s just one of the reasons, but I had certainly wondered as we banked through a turn and I thought Noah might go sliding into the water that I wasn’t sure how I might help him as we waited in the water for rescue. I also told her how my husband can no longer swim with my son, but my son still loves the water no matter how big he gets, and he needs me swim with him, not hang onto the edge. And I explained, maybe not in so many words, but in words that reference fitness and weight loss and non-impact exercise being good for aging joints, that I want to be in better control over my body. I wanted to learn to trust it. I wanted to stop being afraid.

To my surprise, the backstroke is the easiest of the swim strokes I’m learning, or re-learning. (The butterfly isn’t great on the shoulders at our age, Melissa tells me.) And it’s when I first launch back and float a few lengths of my body, before I begin to windmill my arms over my head and my feet flutterkick, that I began to think about Cindi and those days in the sun at the Northwood pool, my head leaning back against her shoulder, my back supported by her front, and her strong body smelling of cocoa butter gliding us as one along the water. In those seconds before she would let go of me and hope I could hold the position, I could believe I would one day learn to float. Over 40 years later, I no longer pike down into the water. I no longer fear I’ll fall. It helps, of course, that the lap pool only goes to 5 feet, so I’m never in danger of not being able to touch the ground. But I find I don’t want to feel the rough bottom of the pool beneath my feet. Actually, I find I don’t need to.

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.

A Meditation, on Noah’s 12th Birthday

I woke early and put a pot of oatmeal on the stove to cook. Noah is recovering from strep, and now so am I, so we need something to eat that will be gentle on our sore throats.

I didn’t hear Noah get out of bed while I prepared breakfast. Didn’t know he was awake. Usually he cries out, wanting early morning attention, wanting help to get his iPad turned on, cold because he’s kicked his blankets off again. Instead, when I returned to the bedroom, his covers were pushed back and his space–which is exactly how “where your child once was” always feels, spacious, bereft–was empty. I had a flash as all parents do. Where is he? Where has he gone? Is he lost? Will he ever come back? Some parents feel it in the mall. Some when they have lost sight of their child in the backyard. Because Noah is never without me, my husband, or his respite sitter, I have yet to work on the muscle that all parents must strengthen: let your child off the leash of your attention; let them go out into the world without your eyes on their backs. But still, a moment out of sight has my heart jumping.

Independence is why we moved to this new house. In our old house, Noah would have awoken upstairs while I was downstairs in the kitchen. To join me, he would have had to navigate steep wooden stairs, and over the years, our caution, or warnings–“Noah, wait for me. Noah, sit down at the top of the stairs and bump down on your butt.”–had taken root and he rarely descended on his own. But this house is one story, and he occasionally will, as we’d hoped, move about the space more freely. Still, when I can’t see him, I get a jolt. Is he somewhere he could hurt himself? Is there something he could hurt himself with? Noah’s world is rife with hard surfaces and sharp edges.

I found Noah in the livingroom, sitting among his birthday presents that he opened piece by piece over the weekend. Diagnosed with strep throat on the actual celebration day, he’d had no interest in presents. And if you are one of the few people to know Noah well, you know that he loves nothing more than opening a wrapped gift. He doesn’t much care what’s in the present; he just wants to experience, I think, the mystery. What is it? Can I open it? Noah’s extended family knows to wrap a lot of gifts at Christmas. Socks. Matchbox cars. Books. Snacks. And still he’ll move on to yours. He’ll open them all, everyone’s, if he’s given the chance. Handing the opened gift to the owner holds its own revered place in the ritual too. But ultimately it is the wrapped that becomes the unwrapped that thrills him.

But this morning, his attention was pulled by the mass of 10 x 10 colorful, interlocking floor tiles we ordered and wrapped, a practical gift to be used as a mat for his playroom downstairs, to soften and warm the cold tiles of the refinished basement, to guard against risk. I stood in the doorway and watched him for a moment. Took a picture of Noah with a tile in each hand. Took a moment to feel what it must feel like to have your child play on his own; it’s a rare experience for me. To have quiet. To watch him use his body and brain to progress a concept, even if that concept is stacking floor tiles, which is what his goal seemed to be.

Noah’s need for help, for a companion, for interaction, is often a burden, one I’m certain me and my insufficient character have inflicted upon him. I’m not tough enough to force him to figure problems out on his own. I wasn’t tough enough in the face of one special needs child to have a second child, provide him with a brother or sister who would have not only been his sibling, but also his model. Sometimes Noah behaves like a dog, because the dog is sometimes his most ready mentor. When I indulge in the idyllic, I wonder how much more capable Noah would be if I’d been more brave. When I indulge in self-abuse (maybe the same thing?), I wonder why I couldn’t have found a way to be less selfish.

I’ve developed the skill over the past twelve years not to deal in the “what ifs” around Noah’s birth that circle with abandon like seagulls after a street fair. What if I had chosen to have children earlier, before my 30s? What if I hadn’t rushed back into the pursuit of pregnancy after my miscarriage, waited the recommended length of time for my hormones to reset? What if I hadn’t drunk the wine on my 33rd birthday before I knew I was pregnant again, because for some reason I’d thought it unlikely I’d get pregnant again so quickly during that time of hormonal flux. What if I’d simply decided children were not for me, and the seductive tick of my biological clock and the desire and responsibility I’d felt to make my husband a father hadn’t swayed me. Still, the “what if” of having had more children still haunts me. In this way, I know I have done life wrong. And I know I have done wrong by Noah.

Noah has made two piles of floor tiles. I suggest he might want to make more piles, sort by color. There are some days when he is up for the challenge of matching like items. I know he can do it at school as that is a kudos he receives regularly. But not today. He has tried to link one set of tiles, like puzzle pieces, but it’s too hard for him to align the tabs. He’s complicating his play in a way that would be considered dead simple by any child over the age of one: he’s crossed the room to collect more tiles to bring them over to those he has already stacked. It seems ridiculous that I’m proud he’s decided to extend his play in this way, that this is evidence that he identifies that there are more tiles to be had, that the room is big and even if he can’t see the extra tiles in front of him, he knows they are there. But it also seems like a sound observation. I am my own Jane Goodall, and I am neutral in my assessment of this rare being interacting with objects.

Noah’s world is small, his environment contained. Years of therapy have done little to expand his instincts with regard to space and possibility. There are a million small instances that I observed when he was very young that added up, like Tetris on its slowest speed, to my understanding of his natural limits. We dangled toys from the arching handle of his car seat, but he never reached out to touch them. He heard airplanes, but even if I got him to tip his head up toward the sky, he had no way of understanding where and what he was looking for. If someone calls his name, even someone he loves, who excites him, he smiles to himself rather than reacts. Some people process this as a lack of social skill; but we know his challenges are more nuanced than that. When he looks up, or to the side, his eyes twitch, a condition called nystagmus, and security and stability, comes from staying focused on what is right in front of him. When he stretches out his arm, he doesn’t seem to know where it is in space. And so, it becomes all of our responsibility to be the mountain that comes to Mohammad, and as I said above, that can be a burden when the mountain has shit to do.

It’s likely true for all children born in the early ’00s, but documenting Noah’s childhood rather rapidly changed from us pasting pictures in a baby book, to recording hand-held videos of him eating his first foods, interacting with his dogs, taking his first steps, and storing those little cassettes in a desk drawer to someday transfer onto DVDs, to movies and pictures accumulating on iPhones, ScanDisks, and out there in the cloud. It feels somehow more dismissive in Noah’s case. His progress is so slow that we’ve run out of accomplishments to document. He is twelve years old and has spent a half hour this morning stacking foam mat tiles, and I am pleased and find it a moment worthy of documentation.

I am pleased enough that I have edged into the room, seated myself on the couch with a coffee, and started to record this play session. I think to myself, if I posted this video on Facebook, it would be the most boring any of my friends could sit though if they committed themselves to it. And what would I type in the status update? “Say something about this video” the app instructs. Do I write that this video portrays Noah as he really is? That I have captured what it is like to raise a child whose progress is 13 minutes of self-motivated play regardless of what that play is? That this is as much progress as we’ve achieved in 12 years? That these moments of quiet meditation are more about me and less about him, about how I’ve fought to find an emotional equanimity that allows me to see and feel and know, but not see and feel and know too much. My practice has led me to identifying and stepping back from the edge.

Last weekend, I played in a tennis tournament, and doing so always requires me to perform some cursory small talk with my opponent before each match. And because these are women about my same age, 35-45ish, the usual topics are work and children. What do you do? Oh, that sounds interesting. Do you have kids? Yes, one son. Only one? Yes. (Some people make a sigh of regret here, which I always think is a bit presumptuous.) How old is he? Twelve. Oh, that’s a great age, does he play tennis too? No, he’s not really very coordinated. So he’s more of a video game kid? Well, he does like his movies, and he has his favorite shows. Then, does he play an instrument? No, he likes music, but is more into listening.

I prevaricate not so much any more because I’m afraid to talk about my son, afraid of the emotions that would well up unbidden, though that certainly was the case for a long time. I hedge my answers now because I hate to disappoint people. I hate to be the person who brings that into the conversation. And by that, I mean…whatever having a special needs kid might mean to that person. Maybe fear. Maybe even horror. Maybe judgment. Likely discomfort. Likely some embarrassment. Likely some sympathy. Definitely some awkwardness. Rare has been the occurrence of someone having a like story, an “I’ve been there” look to share with me. And so I deflect. Ask them about their kids, and in an about-face of my usual narcissism, I listen and ask questions. That is good practice too.

In my second tennis match of the day, my opponent told me about her two daughters, eleven and thirteen. The eldest is laid back and cool. The youngest is a drama-queen who obsesses about over-performing. She says the younger auditioned for a part in the school play and never got a callback, so spent the weekend lamenting, anguished, with her mother doing dancing-bear antics to try get her to look at the situation from a different angle. Maybe she did so well that she didn’t need to perform a second audition! (Which turned out to be true.)

While tamping down the voice in my head that wants to goad me into feeling sorry for myself because Noah will never, as I did, audition for a play, I told her I completely understood what her daughter was going through. I too was a lamenter, prone to wallow in how I understood reality, rather than choose to believe there were many more plausible scenarios than the most self-punishing and unfair one I’d settled upon, and that didn’t really change until I got much older. She asked me how I’d gotten over it. And I answered truthfully: I had children. I said, nothing teaches you that you can’t control everything more than having children. And she seemed to agree. I didn’t add that nothing teaches you that you can’t control everything more than having a special needs child.

Every parent builds, even unconsciously from a very young age, a whole infrastructure of exceptions and desires around what kind of parent he or she will be, and what kind of child he or she will raise. Even if your goal is to be the antithesis of a helicopter parent, that too is a preconceived goal. My son received a Future President onesie when he was a baby, and I happily dressed him in it. My enjoyment in seeing him wear such bravado wasn’t because I dreamed he’d someday be President, but because it felt like a symbol of his limitless potential. But that whole dreamscape that gets built over years of watching idyllic family-based sit-coms, judging your friends as they have children and raise them differently that you believe you would, worrying before you even give birth over Montessori versus traditional early education programs, and the like, forgets one thing: the child. With Noah, the only thing I can control is how well I parent him. And, at the risk of sounding the world-wearily know-it-all, that’s true for any parent, or, I believe, should be.

I’ve now recorded 13 minutes of Noah stacking floor tiles. He’s gathered them all from the furthest reaches of our living room. I’ve recorded his progress largely because it is progress, from the formation of a desire to the attainment: stack all the floor tiles into two somewhat uniform stacks. (I won’t know until a minute later that the end goal was to pick the piles up and hurtle himself and them across the room.) My son is 12 this year, and with practice I’ve learned not to hate myself, fate, a world full of expectations, or even him, like some everlasting duck-duck-goose blame game, and to sit comfortably with a reality I would never have chosen for either of us. I have this story to tell, and so I do.

I won’t tell you I’ve achieved a state of peace. I still wish we as humans didn’t celebrate birthdays at all, because then I wouldn’t have to confront what having a 12 year old with the skills of a 1-5 year old means. And I won’t tell you that fear of the future doesn’t haunt me to a degree that still occasionally dips its toe into mental instability. But I will ask you, should I ever upload the video, to watch for the full 13 minutes. To have the patience to wait it out. (Even if it’s to catch a glimpse of a black and white beasty roar-yawn his way past the screen in search of a dog treat when he hears my husband rustling in the kitchen.) Sit, and watch, and see what I get to see.

Last Night

 

The Mother Bed

Last night I put my arms around him as he lay in bed, eyes on his tablet, knees pulled up to his chest. Such long legs, getting thicker by the day, but I can still see his baby self in his skin. I’ve given him his seizure medications; I’ve washed his GTube insertion, applied Desitin, a square of gauze. I know I should tend it twice a day, but once is all the time I’ve got. I’ve dosed him with Melatonin in hopes he sleeps the night away, no tossing and turning, no cries in the night, no hours of wakefulness that have come in swaths since he was an infant.

We still share a bed even though he is eleven. You may find that inappropriate. Certainly some people do. Sure, he hasn’t had a seizure in a year and a half, thanks to the nutrition via his GTube we assume, so maybe he’d be safe on his own, but how can I know? Always our bedsharing was a necessity born out of fear. His seizures most often happened as he moved between levels of sleep. They were silent and too long, not violent and quick as most people imagine, as is often shown on TV. Instead, he just grew stiff, unresponsive. While I’d have loved to believe some kind of inner instinct would rouse me to some unusual silence across a hall, real life doesn’t often work that way. Otherwise there would be no death by middle-of-the-night fire, or while-they-slept burglaries, or children who go missing as though taken in the rapture.

What about your husband, your marriage, people ask me. And maybe I can’t explain that this is not a zero-sum game: both of us benefit from our son staying alive. The fear of SUDEP, which sounds like a cold medicine, but is how people with epilepsy sometimes die, still lingers. I have always been afraid that the one time I look away, he will suddenly disappear. Not his body, but his life. Evaporation. Ether. One time he had a seizure and I was alone with him and his lips turned blue and he stopped moving entirely, and that’s a thing that happened, and reason is no match for memory.

So bedsharing became the default, but is now a necessity because I fear the exhaustion that switching him to his own bed will bring on. When he wakes up at night, he wants a comforting hand on his back. Or a change of clothes if he pees through his night-time pull-up. Or for help finding his comfort blanket. I have grown better at falling back asleep after such disruptions, but rarely do I get a full night. When we begin to train him toward some additional independence, surely I will get even less. You may think that’s selfish, but eleven years is a long time to be tired, and sanity is a commodity I’ve learned to hoard.

I told someone today that I’d never had a driving need to be a mother, and the decision to have a baby had been more strategy than longing. On the verge of thirty, in a happy marriage with a man who deserved to be a father, I asked myself this: on my death bed, what I would regret more, not having children or having them? The answer seemed clear at the time, and so we did. (Before you ask me, we stopped at one, because he has been enough work and worry for two.)

When I hear stories of women who suffer due to childlessness, I can’t find a way to put myself in their shoes. When I hear women celebrate motherhood, they are speaking a language that sounds like my own, but the meaning gets lost in the distance between their mouths and my ear. I have a friend who has prosopagnosia, the inability to recognize faces, and that seems as good a metaphor here as any. It’s like I recognize the individual features of our common experience, but I can’t put them together to form a picture that is identifiable to me.

Simply, I don’t know what it’s like to be purely glad to have had a child. I sound cold, I know. But I can’t claim joy at having brought a child into the world who will struggle as mine struggles. That would require me to go to great length of Pollyana-ish denial, and I have far too much guilt for that. Yes, I am a better person. More compassionate, more selfless, more multi-faceted. And yes, he perfect in his imperfections. And I do often wonder when thinking about belonging, about helping him find a place in the world, if our culture is more the problem than his disabilities are. Sometimes I try to challenge people in rethinking the way they think about seizures, about special needs, that euphemism I have grown to abhor. But I would trade all of those personal gains, all of my drop-in-the-bucket activism, for having given life to a child who will be able to talk, to read, to shop, to drive, to work.

You see, I am ambivalent about being a mother, and as my child grows bigger but doesn’t truly age, I expect my feelings to remain complex on the matter. But after years of chastising myself, I now know this: it is possible to hold these two truths in my heart at the same time. There is nothing I love more than this child who I would never have decided to birth had he not appeared to me and bade me love him, like a stray at the door whose scars and ferocity are a lesson, not a reason to send it back in the rain.

I love my son most when we are quiet and I hold him in my arms and my heart, and the ache of loving him burns through me like I’ve downed a tequila shot and eaten the whole lime both. That’s not very romantic, but the visceral rarely is. Motherhood rarely is. For me, it is still poop and drool and too-sharp nails and sometimes bites and lots of embarrassment over his public behavior, and always, always, tiredness. My pride cringes as I tell you we still share the same bed. But I would take a hundred more years of all of those struggles, ironically to outlive my child whom I have always feared would die, because I have never been so afraid to leave someone I have always be destined leave.

 

Three Mothers

I just really dispute the premise that to write your story is to claim that it’s exceptional, or worse than, or more interesting than anybody else’s story—it’s just what you’ve lived. It’s…just using what you have.  ~Leslie Jamison, Interrogating Sentimentality

I

Wonder

I must have been born prematurely. I’m not sure how early I arrived into the world, but I was small. Four pounds, thirteen ounces. Small enough, it seems, that maybe I wasn’t guaranteed survival because it was 1971, and I had an infection in the marrow of my left femur. Or maybe it was as easily cured then as now, but that doesn’t explain why, for the first six months of my life, I was a patient at the University of Minnesota Medical Center in Minneapolis. I had a name, Lezlie, but I no longer had a mother.

The mother who gave birth to me was young, seventeen. She surrendered me into the care of Lutheran Social Services, and I would be available for adoption when I became well enough. I often wonder who gave me my name. I wonder if it is just standard procedure, to pick a name for the unowned, like assigning a Jane Doe, but gentler. I often wonder if the nurses held me. If there was one in particular I loved above all of the others. I wonder too if I was lonely when there were no arms available to hold me. I’ve read online that just like Humane Societies use volunteers to walk dogs, adoption agencies also solicit help to hold infants. Because I didn’t have a mother to sit next to my incubator, bright with bilirubin, and stroke the back of my hand, I wonder, who did?

It’s strange to think of those months–a half a year–I spent in the hospital as a newborn because I am bewildered by the idea that I, just an infant, was no one person’s property. Or no one’s personal property. (Motherhood, I now know, is a state of constant conflict between keeping and shedding. This boy is mine. This boy is his own.) Who fed me? A bottle, no breast. Who helped me learn to walk? And when I did, who or what did I want to catch me? Who took on the responsibility of my safety? Because the whole point of my stay was survival, or maybe cure–who knows what my prognosis was then–, who insured that the doctors took great care with my care? There was no one to consider multiple options, to say yes or no, to regretfully but convictingly say, yes, you can do that procedure, if you think it is for the best. No doubt I had a caseworker, but we know how busy they are.

The infection in my leg is termed osteomyelitis, and the internet tells me at one time it was considered a death sentence. Now it’s treated with a boatload of antibiotics, but it does it’s damage during its stay in the marrow. I have accepted I was born that way, had contracted this bacteria in utero, likely through my bloodstream. That’s called hematogenous osteomyelitis. And it’s more common in premature babies, so perhaps I was. But it’s also possible the infection occurred during or after birth, through staph or sepsis, but I can’t begin to imagine that scenario no matter how many web entries I read. Anyway, the hows seem irrelevant. More compelling to me is, did she know? My mother? Did she know that her baby wasn’t well, and did that matter when she made her final decision not to be my mother?

The doctors were concerned the infection had spread, and I remember being told they scraped my bones, including my skull, for samples. When I was little, I checked my body all over to find where they might have done the scrapings, looking for evidence like suspecting an alien abduction. Most likely I had biopsies. I know that now, but I imagined a greater invasion. I am just thankful amputation was not necessary.

For a short time, between the hospital and my adoption, I lived with a foster family who had planned to make it official until their circumstances changed. My name then was Stephanie, and how must it have been for that little girl to have had to say goodbye to another mother? That I came to my adoptive parents with two big black garbage bags full of toys, many with “Stephie” written on masking tape to label them as mine, was a story told and retold. Perhaps that detail was meant to convey love, that I had been loved, and treated well, and maybe even spoiled with toys, toys that belonged only to me. My mother changed my name because, she said, she didn’t want me to be nicknamed, “Stuffie.” Considering my childhood allergies, she likely made the right choice, though knowing I’d been robbed of a name ripe with possibilities, I was sullen for years about my mother’s choice. Sally didn’t even have an “i” that I could adorn with a stylized heart.

I have always been particularly conscious of the generosity with which my adoptive parents welcomed me, a child who would be a considerable financial and emotional drain on them all of their lives. My father had an 8th grade education and a job with the county; my mother was a stay-at-home mother, formerly a 1st grade teacher. I wonder sometimes if they knew the stress a lack of money would press down on the family, if they would have taken me in, made me their own. So many people now make choices of convenience, but maybe not. Maybe it just seems like we have less room to move within the strictures of our expectations. As someone who has had her expectations blown to bits time and again, I can understand why another woman would want to tightly protect her own.

I’ve never had any yearning to look for or meet my biological mother. I’ve always just been thankful to have found a safe place to land, and a mother to call my own for the twelve years I had her. Maybe my lack of curiosity about who my biological mother was stems from a kind of adaptive independence. Maybe I learned before I even knew how to learn, that I would always, in some way, be alone. Or maybe I’m afraid of the instant intimacy that may be required when meeting the woman who birthed me, when intimacy is difficult for me even when earned. What if she doesn’t meet my expectations? Though I suspect the truth lies more in my fear of rejection: she let me go once, and now that I’m no longer full of potential, what would be in it for her?

When I was pregnant with my son, Noah, I requested my adoption file from LSS. In Minnesota, in the early ‘70s, families were not required to update their family health histories, but my mother had provided more information when I was finally adopted at 16 months. I learned that she lived on a horse farm, and that all of the women in the family (and it is a large family, far larger than my own) enjoyed sewing. For the record, she told the adoption counselor that she gave me up because she wanted to become a nurse. I wonder if she did. I don’t doubt her desire to make something of herself; I literally mean, I wonder if she became a nurse. I hope that she did. I can be satisfied with having been given up for adoption in the name of her achieving the kind of life she needed. It’s a decision I think I would have made in her place. Motherhood has been an uncomfortable role for me since before my son was even born. I bear her no ill will, and really, only the hope that she had a happy life and no second thoughts about the daughter she would never see grow up.

There are questions I have about that early span of my life, of course, but these are questions no mother can provide me. I’m less curious about the who and the why than I am in the how. How did she come to grips with her decision? I struggle with the simplest of choices, never wanting to make the wrong one, never wanting to face the consequences of error. And I wonder if that part of my personality is a result of my having been giving up, passed between families, grateful for being adopted but nervous that a misstep could mean dismissal, return to sender.

What happens when a baby has no mother, no father, no regular? Did I imprint on no one? Attachment parenting advocates closeness, but to whom was I close? Who did I want to be mine? How often did I need that which wasn’t there to be given? How does that track down the line of that baby’s life, into my adult life? We are told the first three years of life sets a pattern, determine tendencies. I can’t be angry because whatever I am, I am resilient, and maybe that too came from those days when a blanket may have slipped off my baby body and there was no one there to slide it up to my shoulders, tuck it under my hips, and soothe me with a kiss on the forehead.

While I rarely wonder who she is, now that I’m a parent, and now that I’m no longer young, and neither is she, I do wonder if I am my biological mother’s one unanswered mystery. If she is still alive, only 63, does she wonder what became of me? Did she know I was sick? Did she talk to me before I was born? When I had hiccups in her womb, did she stroke her stomach to soothe me? Does she wonder if her sick baby got better, or does she remain relieved to have rid herself of my accompanying burdens? Does she sit, even just for a moment, when the morning light is just a certain way, and she feels young and full of memories, if that baby had the kind of good life she must have wanted for me when she said goodbye to the body she had built with her own body, fed with her own blood, and, I believe, loved in some way, in the right way.

II

Wait

For nearly five weeks, my mother sat beside my hospital bed. Each day, she arrived early, from the bare-bones lodging across the street from the hospital, and idled straight-backed in the room’s lone orange vinyl chair with angular brown wooden arms, as we waited for the doctors to slowly pull my left leg apart. She absorbed every blow: my tears of pain and tears of boredom, anger at what she was allowing them to do to me, anger at what unfairness I was forced to submit to. I didn’t wonder at the time, how she felt. Any parent who has ever held her child while he received a vaccination, or a strep test, or stitches in a wound, knows the anguish, the exhaustion, of cooperating or being complicit, in the infliction of pain. I have no recollection of being empathetic enough to imagine she felt anything at all, even as she made impossible decisions meant to make me better, while also making me scream.

Born with an infection in my femur, my left leg grew more slowly than my right, the whole leg like some underfed conjoined twin to my sturdier right leg. At the time, this surgery–to attach an “apparatus” to the outside of my leg via pins inserted through the skin, like a dock pillared into water and sand, that would then be cranked apart millimeter by millimeter each day until the space between the two separated sections of my left femur grew to 2 inches–was rare. It took nearly a month of minute progress toward a particularly scary resolution for me: another surgery, this one to remove bone from my hip to graph into that gap in my left leg, and for plates to be placed along the bone to keep the graph in place until my bones accepted and assimilated the new addition.

So we waited, my mother and I, for my muscles to be stretched, my split skin to mend, skin cross-stitched with dark thread like that pulled from her embroidery skeins. A crafter and knitter, my mother didn’t often do embroidery, but this needlework was portable and complex, perfect for the minutiae of a long hospital stay. Just a hoop, a square of cloth, limp figure-8s of glossy thread, needles, wooden darning mushroom. I spent much of those weeks in a large wooden reclined wheelchair, warding off boredom in the children’s lounge doing arts and crafts, eating microwave popcorn–that futuristic treat!–in the dining lounge, neglecting the homework the teachers sent, watching the day’s soap operas, but also waiting for my mother to let me take a turn with her embroidery hoop. I so wanted to try my novice hand at the delicate work, but she simply wouldn’t allow me the chance to make a mistake amid her tidy stitches.

It was a large and tricky project, an intricate Christmas tree, and each ornament was a different type of stitch. She had to teach herself each one from the instruction sheet. I remember silver knots like those metallic decorative candies we are no longer allowed to eat. I remember gold threads layered, criss-crossed, to create stars. There was a patchwork puppy in a gift box under the tree, a nutcracker soldier nestled in the branches, and a yellow-haired angel on top. Each night she would tuck all of the embroidery paraphernalia in a worn plastic bag, and when she rose from her chair, a cut in the vinyl was revealed, like a wound that was covered with her presence but unchanged each night when she left.

One of those mornings that I was in the hospital, she didn’t return to her seat near my bed, because she’d had a heart scare on her way to my room. It may have been a true attack–by the time she died two years later, she’d had several–but at 10 years old, I didn’t understand, or maybe I didn’t want to understand because all I wanted was my mother to be there, in her chair. Instead, I was the one left waiting to visit her, maybe my father, or a nurse, now wheeling my chair to the third floor of the same hospital. There was no arts room on her floor, no decorative smocks on the nurses. I don’t remember how long she stayed, or how I managed the rest of my own treatment without her presence, or how sick she was when I finally arrived home. Because I was in a body cast, from waist to toes, and because of her wavering health–small dark bottle of nitroglycerin always at hand–, my father had air conditioning installed. I wonder where he got the money to do that when there was no money to be had. My mother and I, we had used it all up.

That summer, I learned hospitals were places for recovery, and maybe even miraculous feats of medical engineering, but also places that simply stalled death, didn’t solve death, though adults embroider the truth into something more hopeful. My mother would have many more days and nights in the hospital in the final years of her life. The diabetes she developed when very young had taken its toll on her organs. I would spend some of them, twelve years old and inconvenienced, in a chair at the side of her bed. As an adult, I would carry that plastic-framed embroidered tree to every apartment and house I moved into, as well as the sense that, unlike the picture, there will always be something started but left unfinished about my childhood.

Eventually, my skin healed, pale railroad track scars lacing my leg, and my bones knitted themselves back together. Now, six varied scars graffiti my lower body in a successful twenty-one year series of surgeries to make me functional. The doctors reassured me that as a result, my leg would be even stronger than before. I suppose that’s the theory of hearts as well.

 

III

Want

12/2/2015

Dear M,

Well, Noah had a bad November. And of course that means we all did. On the 6th, he had a seizure when he came down with a bad cold virus. Not atypical for him. But the weird thing was that I could tell the afternoon before that he was going to have one. That was rare. His seizures are usually so unpredictable. Anyway, seeing what I saw, I should have given him his Clonazepam as a safety net but didn’t pull the trigger.

I don’t know why I have such a difficult time giving him the medication he needs. How is that worse than having to give it after he has a seizure? Maybe I don’t know how to trust my own instinct. Even worse, maybe I’m in some kind of denial, and I don’t give him the medication because I want to believe a seizure won’t happen if I don’t acknowledge it. Either way, I find it difficult to take action though taking control makes all sorts of sense, since I want nothing more than control. But then, nothing about this makes any sense. Observation is the name of the game, but I’m never quite sure what I’m looking at.

Anyway, that first week or so, we thought he was just weak and tired from a virus. But some days, when he was tripping and buckling at the knees as he was walking and I was holding tight to his hand to keep him from falling, it seemed that maybe the curse had descended. Our fear has always been that he is a ticking time bomb, that he has an unidentified syndrome that will bring upon him a decline. For the first time in years, we decided to stay home for the holiday to see family and give him complete rest. Today was his first day back at school since last Tuesday and he was sharp as could be, so the rest seemed to do the trick. When I picked him up, he had a welt on his cheekbone and bridge of his nose; he’d fallen twice.

A trip to the neurologist and we likely have a new seizure type to add to his many others. The Physician’s Assistant is pretty certain these are drop seizures, which are bad. Bad, hard to understand and prevent, and dangerous. So the plan is: to interrupt this new seizure habit his brain has formed by putting him on a load of the Clonazapam for 3 days, and then taper it down over 6 days. That might be enough to “reset” his brain. Who knew such a thing was possible? It’s a total torque to our schedule because he will want to sleep through the days. I can’t imagine we will be able to send him to school. Then we will do a 24-48 EEG in the next few weeks. Then we will talk seriously about inserting a VNS (nerve stimulator) under his arm which, we hope, would begin to interrupt his seizures without medication. Even though I know it could help keep him safe, and it’s not unlike a pacemaker, which rarely anyone blinks at, it seems so much more invasive. But that may be a choice we have to make.

12/3/15

Noah’s epileptologist, once he heard the PA’s report, is so worried about him that he found him a bed in neurology ward almost immediately. We’ve done this kind of stay before, and while the boredom of keeping a young child occupied in a closed room for several days is nothing I look forward to, the deepest trauma comes from the actual application of the electrodes. For whatever reason, the techs will not allow him to sit up for the procedure, and while it seems like nothing to me–just globs of wet, smelly paste and cold blasts of air to dry it–Noah can’t bear laying back and giving in to what he can’t see happening. We try all the cajoling and distracting, but ultimately have to hold him down and make him submit. I flashback to when I was a kid, when I was forced to allow doctors to perform inspections and procedures I couldn’t fully understand, and the pain doubles.

12/5/15

The testing, as always, is inconclusive. The EEG didn’t show evidence of anything we can assign as new or even causal, and the follow-up MRI was normal, so now we look at adjusting his drugs, thinking the polypharmacy–three seizure medications, not counting the on-demand Clonazapam–is impairing him. Generally speaking, seizure disorders and epilepsy are best treated by monotherapy, and polytherapy has been shown to improve control in only 10%. So we are going to start a bridge med (4!) called Onfi while we begin to reduce the Felbamate, which I never thought was effective anyway. They offered to adjust his medications in hospital more quickly over just three days, but we couldn’t bear the thought. So we will do a 6-week wean at home instead. How can we possibly know what’s right? We can’t. It’s an experiment with our child’s brain and welfare which offers us no right answers beyond effort.

Neuro meds are always an experiment. Or so they keep telling me. (How odd to become a specialist in something, an epileptologist, just to know that you don’t know enough about the brain to actually be effective a high-percentage of the time.) We expect doctors to have answers, but all people process meds at different rates, and all meds interact differently when put into play with one another. I just want answers and there are none to be had. In Noah’s case, because there is no cause of his symptoms, it becomes even more difficult to find the right drug out of many. As one website puts it, the door to a solution is locked and you need to discover the right unique key to unlock it; so it is possible that Noah’s meds no matter how many, nor how effective for other children, will not gain us access to seizure control.

12/27/15

Noah has been admitted to Children’s ICU isolation. They think he has Nontypeable H flu with pneumonia. We’d been syringing liquid into him, hoping to keep him hydrated, thinking he’d rouse if we just tended to his symptoms and waited. For a kid who loves presents, he couldn’t even get excited for his Christmas gifts yesterday. That’s when we knew he’d fallen away from us. The good thing is that his vitals are stable and they are getting fluids and antibiotics into him, and hopefully food via tube. He’s still unresponsive, however, so that’s frightening to us all. The usual tests they do to stimulate a reaction–pinch fingernail beds, run a sharp point along the bottom of the foot–aren’t doing anything. One of the ER doctors looked at us after ordering a number of scary tests, like for meningitis, “You do realize that your child is very, very sick?”

They are taking this opportunity to observe him via EEG and tweak his seizure meds. At least he wasn’t conscious enough to freak out about the electrodes. It’s possible the seizure meds played a part in masking the severity of his symptoms to us, or his body’s ability to fight the illness, or even caused the pneumonia by allowing him to inhale liquid as we tried to force him to drink. Lots of moving parts. Lots of regrets. He looks so small in the hospital bed. And I can’t help but wonder if we will get him back intact, or has this illness compromised him all the more?

12/29/15

All is ok again with the EEG and CT too, so far. It feels like we are playing chicken with his seizures in regards to his meds, but the Critical/Acute care people feel like he may just be a kid particularly sensitive to “benzos”–the Onfi, the Clonazapam, and even the Diastat we use in emergencies, that has always knocked him out for a couple of days– and that’s what is causing a good portion of the problems with his alertness and may give the impression of his being sicker than he actually is. (I continually remind myself that we are good parents.) So there is a bit of push and pull between neuro and the acute care pediatrician to decide whether to put him back on all of his seizure medications. The neuro wants to resume status quo, but the pediatrician believes it’s the medications themselves that are to blame, especially the new Onfi. Here we thought we were helping him, when it seems we were putting him in danger instead.

12/31/15

So it is New Year’s Eve. What…to make of all this? A new year, more of the same–Noah sick, me struggling–, yet all more difficult because he’s not himself. He is week and listless, and not my son.

It’s been overwhelming today. The sadness. Tears have come easily. I feel as though my hands have been amputated. I want to put them to work on healing my son, but my efforts are completely ineffectual, even phantom, as there is nothing any amount of mothering can do.

1/5/16

Stabilized. Probably in the hospital for another week. I’m on my way to New York for work. I can’t believe I’m leaving him, and yet, isn’t this what we have learned over the past 10 years? To live as though you don’t have a dark shadow following you around everywhere you go? One of the hardest parts of suffering is suffering over the suffering. At some point, you have to turn it off, cap the faucet, cut the wire.

1/18/16

Noah is still in the hospital. Day #23. He will be having surgery Thursday to put in a G-tube. The pediatrician at the hospital thinks she’s figured out what’s at the bottom of Noah’s decline: he doesn’t have enough nutrition. And his weakness, and those episodes they thought were drop seizures, may have been malnutrition due to a growth spurt during which he didn’t have enough calories to power him up. So all that extra dosing of the seizure meds? Likely unnecessary. I cannot tell you how that feels. I cannot help but wonder what kind of mother I am to have drugged my child to the point of starvation. And now, to realize that I cannot satisfactorily feed my child in any way. That I have been naive in thinking I have made the right decisions.

So we have agreed he should have the surgery, have a hole put in his belly, carry that scar for life. But if that eases the strain of giving him medication by mouth when he’s sick, and provides him with nutrients that he must be missing, then it’s the right decision. I think. I hope. Because that’s what I’ve thought before. I wonder if there is any way to know what the right thing to do is, until you learn that it was the right thing to do, which likely had very little to do with you and a lot to do with a confluence of factors you will never truly understand. Perhaps that is the closest thing I will ever get to the truth of mothering: good intentions are the only thing that matters because the end results will always be out of my hands, beyond the strength of my desire.

Something We Ought to Do

It began to snow, and I thought we should do something that people do when it snows. So we laced up stiff boots, leashed up our dogs, and made for the mounds of white that had already turned our neighborhood into a movie set, like Jimmy Stewart might come shooshing down the sidewalk (in a parka and cross-country skis instead) and we will sing, “Buffalo Gals, won’t you come out tonight, come out tonight, come out…” Or maybe you are Jimmy and I am Donna Reed, and if you were romantic, you’d promise to lasso the moon, but instead, you are quiet and maybe just following along.

The fresh snow–white and silver glitter flickered in the streetlights, layered on the dogs’ backs like inadequate sweaters–, ahead of us was still untouched, ready for our pack to leave tracks, evidence we’d come out into the world, rather boldly into the cold, because sometimes life becomes a movie scene when you venture out into it.

It ended the way most things end. No matter the splendor, my toes got cold, and I got tired of the fleet wind on my face, before we’d even crossed halfway into the park. No doubt you had more stamina for the weather; nature never seemed to dismay you like it does me. So I posed a plan as I so often do: Let’s take the dogs home, I suggested, and walk a few more blocks to that Italian restaurant on the corner. We’ll walk there, like people do in movies, like people who have a watering hole. God knows, we live in Milwaukee; it’s a shame not to have a corner bar to call our own.

The restaurant was warm and warmly lit. Amber lamps glowed on polished glasses lined up on the bar. My wine was red and your pasta thick. It made the walk through the snow and the park in our early-winter stiff boots all the more idyllic, like there might be movie music soon swelling, and the speed of the action would slow just enough to draw out the moment before the two love interests kiss. Eating eased your irritation with me for pulling you out of the house, like a dog on a leash, to fulfill these ideas I have of things we should do, because it’s what people do, and not always because I long to do them.

Things change as they so often change. Those dogs are long dead, and our black and white mutt hates to get cold or wet so there is little point in going on a leisurely walk in the snow with a dog that prefers dry paws. But I suppose he isn’t too unlike me. I only make myself go out if it seems like something I should do. And sometimes it’s worth it because of moments and memories: that night, that snow.

Now, you can’t be out in the snow, well, the cold, and no sun for you either, which makes going out in March in Milwaukee nearly impossible. Maybe in summer you can walk through our park before dawn, before the sun is up. Photo-sensitivity from the chemo is a danger, but so is everything, it seems.

I shouldn’t have been worried that we’d run out of scenes. Sure, we don’t amble about the neighborhood much any more. But when the doctor told me you had leukemia, I wondered what my next lines should be. And when I told your parents, who had already lost a son, that their son had leukemia, I don’t think I was speaking, but my idea of speaking the words was doing the miserable work for me. So many moments these days, when it is easier to become the watcher and the watched.

All through this past year, I’ve put myself in widow’s dress time and again, but it seems as though you’re going to make it and it’s funny how I know less about this old role of being your wife than the one for which I’d been practicing unwritten lines. We have a man from Europe to thank for his stem cells, for your survival. And maybe someday we will meet him–A handshake? A hug?–just like in a movie. It’s definitely something we ought to do.

This Too Has Merit

In graduate school, I wrote a short story about a old man with colitis. The only reason why was my professor challenged me to stop writing about love. She found my work cliché. (Though she was the same woman who wore a t-shirt that read, “Would you like fries with that?” to my Master’s defense, as cliché a joke about English degrees as there is.) But I didn’t love ugly truths then, so of course the story was about love, about an old man who rejected love because he couldn’t control his bowels. But I did give the man a dog, because otherwise he’d have had no one to commune with. Dogs think nothing of shit. In fact they seem to have an appreciation for all the meaning to be found in a pile dropped on the curbside. There is a lot of who’s, why’s and when’s to be learned from what is left behind. I thought I was edgy when I wrote about shit, but now that I know how it represents the very mundanity of life, not the extreme, it seems ridiculous to bring elimination to the page. And that’s the irony, certainly. I have a husband with blood cancer; chemo and a stem cell transplant aren’t terribly kind to his insides. I have a disabled son who is afraid of the toilet at age 10. So here is what I wonder: Is it my responsibility now to write here about loose stools and “BMs” and colonoscopies and Miralax and pull-ups in size Large and the guilt I feel when my friend takes my dog for a walk and he’s eaten something that doesn’t agree with him and they must wipe up the liquidy mess from the neighborhood lawns or park sidewalks? Will there be a reader who says, yes, my life is shitty too, in a similar way that you write it? Maybe. Now I think I wrote that story about the old man all wrong. Ridiculously, love is revealed when we agree to clean up after another living being’s literal or figurative shit, especially when you think you cannot bear it even one more time. Even when you gag and wonder what your life has come to, and how maybe you wanted a more elevated life, not one that reminds you, without consideration of your own desires, of the most base element of humanity besides death. Maybe Rosa, the old man’s love interest, had once been a nurse or a doctor, a mother, a veterinarian, and she wouldn’t have batted one of her false eyelashes at his trouble. But no, I didn’t even given her the chance to say yes to a man neurotic about his own shit. Instead, I’d wanted him lonely, alone except for his beagle. So he (or I?) couldn’t even ask someone to love him. Because I couldn’t imagine someone loving him, not if they had to discuss shit. But that is an obvious difference between true life and fiction: we are not asked about what we are willing to deal with, or what kind of life we will accept. We are presented with a thoroughly messy life, and the only choice we have is to keep picking up after ourselves and the ones we love with a fierce determination and a very short memory.