Three Mothers (revised)

I

Wonder

I was born prematurely. I’m not sure how early I arrived into the world, but I know I was small. Four pounds, thirteen ounces. Small enough, it seems, that survival wasn’t guaranteed because it was 1971 and I was very sick. For the first two months of my life, I was a patient at the University of Minnesota Medical Center in Minneapolis while being treated for an infection in the femur of my left leg. At 4 pounds and 13 ounces, I was small. Having been given up for adoption immediately, I had no birth mother to tell me the tale. Instead, I have three sheets of paper from Lutheran Social Services that spins out a narrative written by an administrator named Jackie, to tell me what I cannot remember.

It wasn’t until I was pregnant with my son that I requested my adoption file. In Minnesota, in the early ‘70s, families were not required to update their family health histories, but my birth mother had provided additional information when I was finally adopted by my birth parents at 16 months. For $60, the narrative I received was surprisingly detailed.

Your mother was an eighteen (18) year old, single, high school student at the time of your birth. … She was physically described as five (5) feet eight and one half (8 ½) inches tall, one hundred and sixty (160) pounds, with brown eyes and hair and a fair complexion. … Her interests were listed as sewing, reading, and swimming.

It’s strange to think of the two months I spent in the hospital as a newborn. Two months. I was perhaps placed under guardianship of the state and I am bewildered by the idea that I, just a newborn, 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. My birth mother surrendered.)

Who fed me? A bottle, no breast, I guess. Who took on the responsibility of my safety? Did a nurse think of me when she returned home after a long day of work, when she poured a drink, or tucked her own children into their beds? Who insured that the doctors took great care with my care? Was there an advocate assigned to my case who might consider multiple medical options, to say yes or no, to regretfully but convincingly say, yes, you can do that procedure, if you think it is for the best?

I’d always believed I was born with the infection. In fact, I’m near certain my adoptive parents told me just that time and again, and it’s become my answer anytime I’m asked about my limp, about my scars. “I was born with an infection in my leg.” But Jackie’s letter seems to imply something different, that the bacteria was introduced into my bloodstream, took residence in my femur after my birth, by an errant pinprick perhaps.

One report indicated you developed jaundice and another letter indicated at the time of transfer to the U of M you had experienced sepsis, were premature as well as being diagnosed with osteomyelitis, an infection in your left leg.

I had been so clear my whole life that I’d been born prematurely due to the infection, but with the letter, my understanding of the events around my birth has become slippery. It’s possible my parents did indeed tell me that, but the reality is that anything I know about the first sixteen months of my life isn’t anything more concrete than the messages passed during a game of Telephone.

I was told the doctors were concerned the infection had spread, and I remember also being told they had to test all of my bones, including my skull, for other locations of infection. When I was little, I checked my body all over to find where they might have done the checking, looking for evidence like suspecting an alien abduction. I imagined my head shaved bald; I imagined flaps of skin. Most likely I had needle aspirations. I know that now, but I imagined a greater invasion. I am just thankful amputation was not necessary, which the internet tells me is always a possibility when a long course of antibiotics isn’t effective.

Maybe the when is irrelevant, and it doesn’t change the question I’ve always wondered about: did she know? My mother? It’s safe to assume my prematurity was the source of some alarm, even if my illness didn’t occur until days later. Did she know that her baby might not be well, and did that matter when she made her final decision not to be my mother?

When I was well enough, I was placed in a foster home and named “Lezlie.” Jackie’s chronological rendering of this time is somewhat unclear so it’s difficult to know the order of these two events. I find it hard to believe that I had no name at all before being placed with a foster family, so was it a social worker who named me? Was it standard procedure, to pick a name for the unowned, like assigning Jane Doe to a identity-less and lifeless body, or picking a name for adoptable animals at a shelter? I wonder what it’s like to choose a name for a child who is not your responsibility, to turn that child toward the future with the name Lezlie with a “z”? I wonder what version of myself I might have become had I remained Lezlie?

Via her narrative, Jackie is flattering: “the LSS social worker described you as a “beautiful baby” and that you were doing well in foster care.” And, in a letter dated October 4, 1971 the LSS social worker described you as, “small for her age” but that you were doing well in care and had a “tremendously happy, charming personality for a baby.” Then as now, my seemingly genetic inclination toward positivity worked in my favor. In early 1972, my foster family renamed me Stephanie and planned to adopt me, until their circumstances changed. My adoptive parents would later tell me that the father got sick and the family could no longer keep me. Jackie’s pages tell a different and possibly more tragic variation of the story.

You remained with your first family until August 1972 and then that prospective adoptive family’s situation deteriorated to the point where they were unable to care for you. According to the records, your pre-adoptive father experienced some mental health issues for which he was hospitalized and he then passed away in September 1972.

I feel sad for those people who must have been suffering, suffering at the same time as caring for me (well? not well?), who must have thought I was a good idea until I wasn’t. And what must it have been like for the toddler I was, who hadn’t yet had a family, to have to say goodbye to a mother and father when I was taken away?

Two more foster families cared for me, Jackie reports, until I was placed with my adoptive family when I was nearly a year and a half old. I was told many times by my parents that I “came with” two big black garbage bags full of toys, some with “Stephie” written on masking tape to label them as mine. One of those families must have decided I was more of a Stephanie than a Lezlie. Perhaps that detail of the story was meant to reassure me that I had been loved, treated well, and maybe even spoiled with toys, toys that belonged only to me. (Or were there so many kids in the foster family that we had our designated toys? Did a social worker label my toys when I moved to the next foster home?)

My mother changed my name to Sally because, she said, she didn’t want me to be nicknamed, “Stuffie.” Considering my childhood allergies, she made the right choice. She chose Sally because she had been a first-grade school teacher and the Dick and Jane books were old friends to her. I disliked the name when I became old enough to care as young girls do, resentful that I’d been robbed of a far more interesting name, one with an “i” waiting to be adorned with a stylized heart. (It was the 80s, after all.)

But overall, I was always conscious of the generosity with which my adoptive parents welcomed me, a child whose health issues would be a considerable financial and emotional drain on them over the years. My early illness would manifest itself as an ever-shortening left leg. Had I not had multiple leg-lengthening surgeries — one when I was in 1st grade, a series of operations when I was 10, and a final series the summer before I went to college — my left leg would be somewhere around 6 inches shorter than my right. My father had an 8th grade education and a job with the county; my mother had become a stay-at-home mother when my brother, three years my senior, was adopted at five days old. I wonder sometimes, if they could have predicted how much the lack of money from the hospital bills that no doubt increased with the increasing complexity of my surgeries would press down on our family, would they have taken me in, made me their own, knowing my cost? But then I stop wondering, because there is no question. My parents were good people who were often good parents too, even when circumstances made it difficult for them to be so.

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, the locus of a pretty typical childhood. And I was lucky to have a mother for the twelve years I had her. It’s like I made a deal with my adoptive parents before I even knew I was signing on the dotted line: you take me in, and I take you in, and we will become us, no take-backs.

Or maybe my lack of curiosity about who my biological mother is stems from a kind of adaptive independence. Maybe I learned before I even knew how to learn, when I spent those hours and days in the hospital, months in foster care, that I would always, in some way, be alone, my own representative. Or maybe I’m afraid of the instant intimacy that may be required of me by reaching out to 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 a fear of rejection, or maybe worse, disinterest: I am a middle-aged woman with a special needs child; she let me go once, what on earth could we offer her?

Still, my adoption was never a source of insecurity in the way it was for my brother who often didn’t share that information, even with girlfriends. Being adopted, it seemed to me, meant that I was wanted, more so than that I hadn’t been.

A letter from the county social worker in August 1971 explains your birth mother’s wishes. She was enrolled and planned to attend a vocational school. Further, she did not plan to marry your alleged birth father and therefore, felt adoption would be in the best interests of both you and her.

It’s a decision I think I would have advised her to make if I had been her friend then. Motherhood has been an uncomfortable role for me since my son was born. In fact, I wasn’t sure I wanted children, but I made a choice. I’m unsure now, had I known about Noah’s disabilities early, that I would have chosen to give birth to him. Everyone makes tough choices in the “best interest” of both parties. What would mine have been had I known about the seizures, the hospital stays, the sadnesses. Jackie closes her story with an update from 1973:

It was also learned … that your birth mother had completed vocational school nurse’s training and was employed as an LPN.

I am impressed she followed through. Proud of her, even. I spent a lot of time being cared for by nurses while I was hospitalized, and I’ve spent a lot of time grateful for the care nurses have given my son. I bear her no ill will, only the hope that she had a happy life and no anguished thoughts about the daughter she would never see grow up.

Still, I wonder what happens when a baby has no mother, no father, no touchstone for the first year and a half of life? Did I imprint on no one? Attachment parenting advocates closeness, but to whom was I close? Who did I want to be mine? Who helped me learn to walk? And when I did, who did I want to catch me? How often did I need that which wasn’t there to be given? How does that track down the line of baby-me’s life into my adult life? We are told the first three years of life set 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.

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 question. If she is still alive–only 64 by my count–does she sit, even just for a moment, when the morning light is a certain way and she feels the press of memories, if her baby had the kind of good life she must have wanted for me, if it had been the right decision to say goodbye to the body she had built with her own body, the baby she fed with her own blood, and (I believe) loved in some way, in the right way.

II

Wait

My mother sat beside my hospital bed for nearly five weeks. Each day she arrived early, walking from her 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, held vigil as we waited for the doctors to slowly pull my left leg apart. She absorbed every resentful blow my 10-year-old self could deliver. She tolerated my tears of pain and of boredom, tears of anger at what she was allowing them to do to me and anger at what unfairness I was forced to submit to. I didn’t bother wondering how she felt. Now I know better. 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 as she made impossible decisions meant to make me better while also making me cry.

An infection in my femur caused my left leg to grow more slowly than my right, the whole leg like some undernourished conjoined twin to my sturdier right leg. This procedure–to split the bone and attach an “apparatus” to the outside of my leg via pins inserted through the skin, like a dock pillared into water and sand, that was then 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 in 1981. It took over a month of minute progress to allow my skin and muscle to acclimate to the forced growth. The end goal was a scary proposition 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 leg to be stretched, my split skin to mend just to be opened again, skin cross-stitched with black thread like something pulled from the embroidery skeins she brought to my room every day. 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, because I wasn’t allowed to sit up, warding off boredom in the children’s lounge doing arts and crafts, eating microwave popcorn–that futuristic 80s treat!–in the dining lounge, neglecting the homework the teachers sent, watching the day’s soap operas, but also wanting my mother to let me take a turn with her embroidery hoop. I so wanted to try my novice hand at the delicate work she performed at my bedside, but she wouldn’t allow me to try, 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, readying to return to her guest room, she would tuck all of the embroidery paraphernalia back in a worn plastic bag. When she rose from her chair, a cut in the orange vinyl seat was revealed, like a wound that was covered with her presence but opened again each night when she left.

But one morning, she didn’t return to her chair near my bed. My father arrived instead, told me she’d had a heart scare and been admitted to the hospital herself. 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, paying attention to me, paying penance for my pain. Instead, I was the one left waiting to visit her. Maybe my father, or maybe a nurse, occasionally pushed my wheelchair to the third floor of the same hospital to park next to her bed, but I rarely stayed. There was no arts room on her “adult” floor, no colorful smocks on the nurses, no distractions to speed the minutes.

I don’t remember how long she stayed in the hospital, but I managed the rest of my own treatment without her presence by attaching myself to a variety of nurses or candy-stripers like I had attached myself to the teen neighbor-girls who babysat my brother and me at home. I often visited a little boy who had been badly burned. His toddler body was covered in white bandages until they were removed, revealing his brick red skin, shiny as a newly polished floor. He had curly strawberry-blond hair, so sometimes he looked like he was still on fire. I don’t remember his family visiting, his mother sitting vigil as mine had. I was drawn to him, maybe to my own feelings of nobility when I persisted in staying in his room while he cried, which was most of the time. Or maybe I just stayed to witness, finally, a pain greater than my own.

Nor do I remember how sick my mother was when I finally arrived home, miserable in a body cast on my left leg, from waist to toes, during the hot summer. Because of my discomfort and her wavering health–small dark bottle of nitroglycerin always at hand–, my father had air conditioning installed. I wonder now where he got the money to do that when there was never any money to be had. My mother and I had used it all up, trying to get well, be well. But our relationship never recovered. I wanted her to be the mother I wanted, not the one I had. I wanted my life to be the one I wanted, not the one I had. I continued to rage about all the unfairness inflicted upon me. I didn’t know then that my anger was actually my fear.

I was ten that summer when we were both in the hospital at the same time. Then I was 11, then 12, and then she was dead. The last time I was at her bedside was the day before she died. That heart attack had been severe. I suppose they knew. The doctors. Maybe my father. There was nothing they could do. The diabetes she’d developed when very young had taken its toll on her organs so none of the preventative measures to elongate her life could be executed. My brother and I were ushered into her hospital room, and I’m not sure what I expected except that I’d imagined I’d be able to sit next to her as she slept, grasp her hand in mine and wait until she woke like I’d seen in soap operas.

Instead, her bed was raised high, almost arm-pit height. It was no ordinary hospital bed like the ones I’d resided upon. And around her were machines on wheels, tubes and wires strung this way and that like a particularly knotty game of cat’s cradle that kept me at arm’s length. I could barely reach my mother’s hand. There was nowhere to sit. There seemed no reason to be there after only a few minutes, because truthfully, I may have sensed she wasn’t there either.

How long had she been heart-sick? I don’t mean medically. I mean, how long had she known she was likely to die before she could see her children grow into adults? How did she live with the knowing, the waiting? I couldn’t understand when I was young why she was always so thin-skinned. She would fall apart in an instant over nothing. Over my brother and I sparring over what TV program we would watch. Over my dislike of the dinner she had cooked. Over my rude disdain when I came home from school and she asked how my day was and I refused to tell her.

My mother had been older than my peers’ parents and retained a kind of formal idealism that women who lived through a war and believed in God and country and well-behaved children. I still remember so much about her. Her perfectly oval fingernails, the cotton-candy swirl of her brown curls, a fine covering of freckles over her forearms, her small straight teeth and the smell of her breath after her morning coffee. And I carry that plastic-framed embroidered Christmas tree into every apartment and house I have ever lived in, as well as the sense that, unlike the picture, there will always be something started but left unfinished about my childhood.

By the end of my tenth summer, my skin had healed, pale railroad track scars laced my leg, and my bones had knitted themselves back together. Now, at 46, many scars of varying lengths and shapes still graffiti my lower body from the many additional surgeries I would undergo, many of them without a mother to sit by my bedside. The doctors reassured me each time that as a result of all the bone-knitting, my left leg would be even stronger than before. I suppose that’s the theory of hearts as well.

III

Want

12/2/2014

Dear B,

I’m sorry it’s been so long since I’ve written. Noah had a bad November. And that means we all did. On the 6th, he had a seizure when he came down with a bad cold virus. I could tell that afternoon that he was getting sick, and seeing what I saw, I should have given him the Clonazepam he’s been prescribed to prevent him from having a seizure. But I didn’t want to pull the trigger.

I don’t know why I have such a difficult time giving him the medication. How is drugging my child to prevent a seizure any worse than drugging him to stop a seizure? Maybe I don’t trust my own instinct and the seizures force my hand. That way, I don’t have to choose; I just have to do. Any way I look at it, I’m complicit in him having had a seizure, the thing I want least.

A trip to the neurologist and we likely have a new seizure type to add to his many others. The doctor is pretty certain he is having drop seizures, which are bad. Bad, because they are hard to understand and prevent, and dangerous because they are so sudden and unpredictable. There are so many sharp corners in the world once you start looking for them. So the plan was: interrupt the new seizure habit that his brain was forming by putting him on a load of that 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?

Noah’s epileptologist, once he read the PA’s report, was so worried about Noah that he found him a bed in the neurology ward. So we are in the hospital now. They will do a 24-48 EEG and after we will talk seriously about inserting a VNS (a nerve stimulator) under his arm, which would act like a pacemaker of sorts to interrupt his seizures without medication. There’s a part of me that would be relieved to have a non-medication-based solution to his seizures; there’s another part of me that feels like once we go down this road, we admit to some kind of failure, a failure of conventional control methods.

12/5/2014

The test results, as always, were inconclusive. The EEG didn’t show evidence of anything new or causal, and the follow-up MRI was normal, so now we look at adjusting his drugs. A new hypothesis is that the polypharmacy–three seizure medications, not counting the emergency Clonazapam–is impairing him. Generally speaking, seizure disorders and epilepsy are best treated by monotherapy, while 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 (that I never believed was helping anyway.) They offered to adjust his medications in the hospital more quickly over just three days, but we couldn’t bear the thought of inciting seizures by ripping the proverbial Band-Aid off. Instead we will do a 6-week wean at home. How can we possibly know what’s right? We can’t. It’s an experiment with our child’s brain which offers us no right answers beyond our best effort. It’s best not to think too hard about the fact that no one, not even the specialists, know what to do to help him.

Neuro meds are always an experiment. Or so they keep telling me. All people process meds at different rates, and all meds interact differently when put into play with one another. I want answers but there are none to be had. In Noah’s case, because there is no known cause of his symptoms, it becomes even more difficult to find the right approach. As one doctor puts it, the door to seizure prevention is locked and you need to try a lot of different keys to discover the right one to open it. So it is possible to change Noah’s meds, no matter how many, nor how effective for other children, will not gain us control, the one thing we want most.

12/27/14

A twist to the tale. Noah has been admitted to Children’s Hospital Intensive Care isolation unit. They now think he has Nontypeable H flu with pneumonia, but when we first arrived at the ER they suspected meningitis. We’ve been struggling with Noah’s seizures and medications and health all winter, but things took a turn for the worse the week before Christmas. It was hard to discern just when or how he’d become so sick, but we’d resorted to syringing liquid into his mouth, hoping to keep him hydrated, thinking he’d rouse if we just tended to his symptoms and waited. We stayed home for the second holiday in a row. For a kid who loves presents, he couldn’t muster the energy to open his gifts.

His vitals are stable and they are getting fluids and antibiotics into him, and hopefully food via a tube in his nose. He’s still unresponsive, however, so that’s worrying. The tests they do to stimulate a reaction–pinch his fingernail beds, run a sharp point along the bottom of his foot–aren’t doing anything. He doesn’t even flinch. One of the ER doctors looked at us after ordering a number of scary tests, including a spinal tap, “You do realize that your child is very, very sick?”

12/29/14

We’ve agreed to take him off all his seizure meds, because the Critical/Acute care people suspect he may just be a kid particularly sensitive to “benzos”–the Onfi, the Clonazapam, and even the Diastat we use in seizure emergencies–and may be causing his lack of alertness and the impression of his being sicker than he actually is. The neurologist isn’t in full agreement, but I’m inclined to believe the people who are looking at Noah’s full self rather than just looking at his brain. I continually have to remind myself that we are good parents even when it seems our decisions were putting him in danger instead.

12/31/14

A new year, more of the same–Noah sick, me struggling–, yet more difficult because he’s not himself. He is weak and listless, and not my son. I’m overwhelmed today. The sadness. Tears come easily. I feel as though my hands have been amputated. I want to put them to work to help Noah, but my efforts are completely ineffectual; there is nothing any amount of mothering can do.

1/5/15

Stabilized. He will probably be 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 I have learned over the past 10 years? To live as though I don’t have a dark shadow following me around everywhere I 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.

1/18/15

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: it wasn’t a new type of seizure; it wasn’t the medications; maybe not even the severity of the flu; he has been malnourished. His weakness, and those episodes they thought were drop seizures, may have been because he didn’t have enough calories. So all that extra dosing of the seizure meds? Likely unnecessary. Though maybe it made him too lethargic to eat, unaware he was hungry. I cannot help but wonder what kind of mother I am to have drugged my child to the point of starvation. What kind of mother am I that I have been unable to adequately feed my child or identify it as a problem?

So we 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 the nutrients he is missing, then it’s the right decision. I think. I hope. I’ve said no every time a G-Tube has been suggested before, and now I don’t even remember why. I sit here and watch him sleep, so small in the middle of his hospital bed like a pearl in an oyster, and I feel utterly incapable of meeting this moment. And yet, for the first time, I believe I will. Because I finally understand something I’ve fought against since Noah was born: this is the life I have, this is the kind of mother I am required to be, and I’m not going anywhere.

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.

On the Surface

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

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

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

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

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

At 9pm I decide it’s time to retrieve Noah from the porch despite his diligent tasking. His face and hands are littered in blue highlighter graffiti. He grabs for his stack of papers, maybe 7 or 8 sheets, says, “Wook!”, proud of his art. I oooh and ahh, and I try so very hard to ignore–no, transcend–the fact that every sheet is covered with roughly-drawn circles, the only shape in 13 years he has learned to draw. Pages and pages of almost-circles.

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