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.

In Iowa (Two Ways)

My writing instructor at the festival said a write finds form by the process of writing, can trust the creative process to yield the shape and pattern words should assume. I wonder if love is the same? If the act of loving reveals the shape of that love.

My love for my son is warm like hot honey tea, a belly-filled feeling, not a shape, unless the shape is the shape of me. I loved my mother: the curve of her tidy nails, coffee-smell teeth, white stomach folds, each petechia and freckle and insertion point of every insulin-streaming needle. I cannot re-love her now, yet still feel the pattern of her prayers like fingertip taps on my back. She drew me toward sleep by drawing shapes on my night-gowned back–a frying pan with eggs and bacon, our cat, a heart. My father, his hands. My husband a house. Not our house, but the home he builds around me. When I leave the door open in a rush, he never changes the locks.

I am greedy for love. Maybe it’s age, but I want to try love out on everyone. If I can leave love along with signing my name on the waiter’s receipt, I will. I will two-hand grasp the odd man’s outstretched hand after briefly meeting. Meet a stranger’s gaze with a grin. Maybe I’ll just repeat I love I love I love I love I love I love until my heart picks up the rhythm, picks out a desire line, beats one foot in front of another down a path leads me there to love, but I suspect will lead here to where I am. — What is a vessel if water refuses to fill it? — leads me to circle only myself.

Cosmogony II

Most people picture The Big Bang as just that, a big bang. Like a spark and a flame that suddenly brought the universe into being. Energy makes sense. Flipping the light switch on makes sense. But if the universe truly began not from a bang, but from intense pressure that literally pressed the world into being, then how? I suppose it’s why we look to God; the wonders of belief, the wonders of blood, the white and the red. One day, long before we knew Mark has cancer, something happened–his DNA and his environment meet, pressed, bang!–and, lo, he has leukemia.

Maybe there are times in a person’s life that are so combustible that you are fused into another version of yourself. My husband may earn a new life by accepting life from another person, but perhaps he already is becoming someone else. Perhaps it doesn’t take blood to renew the spirit. And perhaps it doesn’t take God either. Perhaps the extreme pressure he is under will change him regardless of the transplant, of the noncancerous cells recreating in his body minutes, days, weeks, and months after. And perhaps the same is true for myself. I wonder, after so much pressure, how much of my previous self is still here? How much of me is memory now too?

Home

(was Grounded)

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

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

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

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

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

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

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

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

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

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

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

Visiting

I was in the hospital for five weeks when I was ten. My left leg was being lengthened millimeter by monotonous millimeter. There, I met an Amish boy who had been injured in a farm accident. I don’t remember much about him, exactly, but my parents befriended his, and in the following year, we visited their homestead, ate jarred meat, and, when dusk fell, watched their many children put on a play from behind a sheet, illuminated shadows made from an oil lamp. I gave one of the youngest girls my favorite doll because the only dolls they had with were hand-sewn, awkward creatures more monster than toy.

I don’t remember what happened to the boy, if he recovered, or even if I spoke to him during our visit to their farm. My mother soon died and there ended our family’s relationship with anyone who required some effort to visit. But I wonder now if the boy struggled to reconcile his startling introduction to modern pleasures amid the unpleasurable at the hospital, if he ever, while back on his farm, wished he could return to those white rooms, to the dings of the nurses’ call button and the rattle of the IV poles and gurney wheels, just to taste some jello and watch TV again.

More often during my hospital stay, I 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 to me like he was still on fire. 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 a pain greater than my own.

A Woman’s Work

In this bleak midwinter, the women
set the table, breathe
deep the histories of their mothers,
their dreamed mothers,
put a roast on a charger.
Sound of Music on the television,
on the stereo
a scratched record
of The Mormon Tabernacle Choir singing
Handel’s Messiah.

On a day when it rains
rather than snows,
the women pour
cups of coffee, burn
toast in distraction, move briskly
from stove-top to counter-top to table
stirring roux, rolling dough, taping
corners of gift-wrapped boxes, set
the table for a feast
of memory.

In the memories
of their children, the women
strike a match, burn the day
like bright embers, like stars,
a pale glitter at dusk. Who knows
what might be remembered,
an extra scoop of cream, a present kept
aside until a quiet time–
“I found this
for you and thought
you might like it.”
alone, the threads
of bounty like sewing strings
knotted into being.

What lasts
is the work of women
who cannot know but hope
each note links
past to present, a song
through sorrow, a comfort
she might live
into her children’s
tomorrow.

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.