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.

Void

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

Last Night

 

The Mother Bed

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

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

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

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

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

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

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

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

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

 

Three Mothers

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

I

Wonder

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

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

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

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

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

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

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

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

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

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

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

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

II

Wait

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

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

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

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

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

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

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

 

III

Want

12/2/2015

Dear M,

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

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

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

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

12/3/15

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

12/5/15

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

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

12/27/15

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

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

12/29/15

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

12/31/15

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

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

1/5/16

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

1/18/16

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

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

Calling My Name

My husband is calling my name. Fear
craters into my stomach and I startle
in response. I once wished he’d say my name
more often. He called me “Beautiful,”
but my name would prove he knew me,
that I was known. Now I hear my name
in a shout and I know our son is seizing
and I should come. We stand witness together,
watch his brain and body strain. I wish I never
had to hear him say my name again.

The Silence of the Sound

It is dinnertime and Mark, Noah, and I have just arrived home from the grocery store. While Mark empties the grocery bags and I prepare the chicken, Noah is occupying himself by opening and closing the storage drawer beneath the oven. When we hear a thump, we both look down and he is lying prone on his back like a turtle flipped on its shell. This happens occasionally. When he just loses control of himself and falls backward. It’s the hypotonia, we are sure. He still isn’t always good at sitting. But he usually cries or laughs, depending on how hard he bumped his head. This time, he is just lying there, stiff, and his eyes are rolled up half under his lids. It is a seizure again, out of nowhere, here when we were doing normal so well.

Mark picks him up in his arms and moves him into the living room. It seems wrong somehow to leave him on the dirty kitchen linoleum to seize. I make a note of the time (6:39) and grab the Diastat box out of the kitchen cupboard. I hear Mark say, “He is burning up!” This is a good sign. Really. It is another fever-induced fever. Not one that is random. If it was random, that would be a different hell. Would carry different meaning. Like getting a life sentence, if that is what epilepsy is. (We would later learn we would not escape that grim fate.)

This is getting familiar if never comfortable. How could seeing your baby, life itself sparking in his bright eyes and exploring hands and thrilled smile of discovery, suddenly vacant of self. Having watched too many graphic recreations of bodily dysfunction on CSI, I imagine the electric currents in his brain zinging this way and that as the fever rises. His brain aflame with electricity. (It isn’t until many years later that I begin to understand that a seizure isn’t a storm, but the eye of the storm, the calm, the silence of the sound, of the fury.) Where does he go during these seizures? Is it like sleep? Is it like death? Is it like peace?

Noah is on the living room rug, his head tipped to the right side as it does, a sign perhaps of where the storm brews in his brain. His limbs jerk and his throat throbs with work and foam collects on his lips. Mark sings. I kneel down beside Noah and kiss his cheek. Wipe his mouth. Watch to make sure he is still breathing. This time, his lips are not turning blue.

Mark strips him to try to tame the fever. I run and get a cool washcloth. I say, “We should just give him the Diastat. It’s been 4 minutes.” There is no reaction from Noah as we lay the cloth across his bare and steamy stomach. There is no reaction when I sing to him his favorite song, or maybe it is my favorite song, the Cole Porter one I sang to him at the hospital when I couldn’t sleep in the wee hours after his birth. “Sun-tanned, Windblown, Honey-Mooners at last alone, Feeling, Fair Above Par, Oh How Lucky We Are. I Give to You, and You Give to Me, True Love, True Love. And On and On it will always Be, Love Forever True. ‘Cause You and I have a Guardian Angel…” We don’t know what we are doing. We know what we are doing because we are doing what we have to. Mark readies the Diastat plunger and administers it via Noah’s rectum. I keep singing and we wait.

We call it the 5 and 5 drill. It’s how we explain the seizure procedure to anyone who will spend time alone with Noah. If Noah has a seizure–oh, you’ll know, we say. He’ll go limp, but also be rigid. His eyes will flutter and probably roll up–, it’s okay to let him seize–in a safe place, of course–for 5 minutes and see if he comes out of it. (I know, how can that possibly be possible? Why is it ever okay to let a seizure run its course?) If he is still seizing after 5 minutes, administer the Diastat–the directions are right here in the box. Please read through them when we leave.–and wait. If he is still seizing 5 minutes later, use another dose of Diastat and call 911. There is a concern with oxygen. There is a concern of brain damage.

There is always a concern of brain damage. We must be alert to possible seizures every day, every hour. He will go months without one, and then suddenly, thump. Sometimes there are signs, in retrospect. The day before? A long nap. An anomalous fatigue when trying something new like standing. This morning? A low-grade fever of 99.5. But then he acted well. He climbed under and around the dining room chairs like they are his own obstacle course. He slid and swung at the park. Enjoyed a trip to the grocery store where we bought wine (joking that Noah had driven us to drink!) and baskets of colorful fall mums. Then, thump. Is the medication not working? Why? Why has this happened today?

As the years collect we will learn there are rarely signs, only our desire for signs, like the common physical salve: Everything happens for a reason. The reason, of course, being applied after the fact to pretend we have some control over chaos. We have no control over the chaos Noah’s disrupted brain has flung into our lives.

Noah stirs. Mewls. Curls up on his side. Eyes closed. His body trembles. His limbs twitch. We think he is back with us. The medicine has broken the seizure’s concentration, but now he is burning up. But now he is burning up, and now he is shivering. We take him upstairs to the bedroom and lay him on the bed, cover his thin (oh, how concave his stomach looks, how weak his limbs) body with a light blanket. Mark is hesitant, but I remind him how terrible it is to have a fever and be cold at the same time. He radiates heat. I get the thermometer. 102. We administer rectal Ibuprofen. Hold his hand. Watch to make sure he isn’t back in to the seizure again (that has only happened once before). He occasionally yawns and squeezes through small cries. You can feel the heat radiating off his body over an inch away. I scan his forehead. 103. I log onto the internet to double-check when to sound an alarm. It is 103. I rush to get the cell phone to be ready to call our clinic’s triage nurse. We lay cool cloths on his skin. Nothing works.

Mark takes him into the shower, puts him in the blow-up duck tub that Noah used as a baby, but it is too soon. Noah is miserable. Cold. In the past, the water has revived him. This time, he is too sick. We dry him off, apologize, lay him back on the bed and take his temp again. 102.5. We decide to hold off calling the nurse; the ibuprofen is working? Next temp, 101.5. Noah rolls onto his tummy, crosses his feet, tucks his arms and knees under him, and sticks his butt up in the air. His favorite sleeping position; our little turtle is right side down now. His breathing accelerates a little, worries us, but then evens out. The tension is out of the room. We lay on either side of Noah, gazing at him, kissing him. In awe of him, like we were in those first days of his birth, but now for reasons less joyful. If we were once amazed by the miracle of him, we are now cowed by the mystery of him.

I cry a little, then. I’ve learned that tears don’t changed anything, but this time I cry for Noah. I cry because it is so sad that life is already not fair to him. All children, I think, should be born with a clean slate. With health. And unlimited potential. But that isn’t the case. Noah’s potential has been limited. By seizures. By low muscle tone. By crossing eyes. By allergies. The limits seem endless. He cannot have ice cream because he is allergic to milk. He is not walking long after other children his age. It isn’t fair to him. He who should have all the opportunity to be happy. And I hope he will be. I hope he will be happy, and we will help him find that happiness no matter what that means.

But I imagine him having a seizure at the playground. On the stairs. I imagine my slight, thin baby as a slight, thin boy, mocked because he can’t play kick ball. I imagine him struggling to talk, or read, or hold a pencil. I imagine him pushed down by a crowd in a hallway. I imagine him middle-aged and alone, sitting at a bus stop, no home, no hope. But, I am learning: these are just imaginings. Strangely, the unexpected otherness of Noah, the expectations of parenting unmet, the dreams of his potential ashed, has also taught me that the paralyzing fears are just as slippery and ephemeral as the hopes. Nothing is real except now.

What is Noah’s potential? When he seizes, all I wish for is having him alive, with me. Each seizure, he is absent, like death is due and will decide whether to stop. Noah’s seizures are whole system and when he becomes still and stiff we drop into a kind of purgatory, powerless to decide if we might ascend. Noah becomes absent of everything but his body, and it would be, it seems, just as easy for him to settle more peacefully into death rather than struggle back to the surface choking life into his lungs like the half-drowned. But more than alive, I want Noah to come back to us as the same Noah who left for those long minutes. No other more damaged version would suffice. I will not pretend I haven’t thought about how much easier my life would be if he were just to fade away.

The ambiguity of my feelings for my child hovers over me like a curse. I am incredibly grateful for the astonishing miracle that is this little beautiful and resilient child. I do not doubt the ferocity of my love for him. But I also fantasize about finding myself in a dark alley, like on the set of some cheap sci-if movie, and coming upon a time machine. I have little doubt I would enter, choose to return back to my motherhood-less life. Selfishly, because I long to do that part of my life over: why didn’t I travel? Why didn’t I go back to school? Why didn’t I write that novel? I wonder if becoming a mother was just a shortcut to purpose in life that had seemed purposeless. But also self-protectively. What of the black fog that shrouds me since we first learned about Noah’s disabilities? People tell me it is normal to mourn the child you dreamed of having, but what about mourning the mother I dreamed of being? When I chose to have a child, I did not know I had also chosen to become harbor to a lifetime of heartbreak.

After an hour nap (I watch over him as Mark makes us dinner—we have learned life must go on), he stirs. Noah is listless, groggy, and can’t seem to close his mouth. I offer him my breast and he is able to take in milk. Mark brings up a bottle of water and Noah drinks more. He makes his talky sounds. We call our dog, Gracie, into the room, a sure excitement getter, and Noah forcefully tries to say “dgogd”. After a minute, he claps, then he gives a smile. All of his best tricks.

We dress him, carry him downstairs, feed him mandarin oranges. He eats and eats. The color is back in his face and he is beautiful. Sure, he is weak and listless the rest of the night, and goes back to sleep by nine, but we think he is okay. Believe that he is okay. We have all survived one more seizure. And suddenly it feels like nothing. Like a close call on the freeway, a car coming fast, a squeal of brakes, then silence. No impact other than the smack of adrenaline, the tingle in your fingers, the beating of your beating heart.

My Purple Heart

In college biology, we saw two cadavers,
regular people who donated their bodies
to science. One was a man, the other a woman,
but so much the same once opened up
for our cautiously curious eyes. Our professor
explained the man’s heart
was enlarged due to years of abuse–
I think, maybe Big Macs and milkshakes
and years of sitting in a corner office.
The woman’s, by comparison, was petite,
compact, like the hearts of the chickens
butchered on my childhood farm.

If my chest were sliced, ribs spread
open, organs exposed, what would my heart
look like? Stretchmarks, for certain,
veining my heart walls since
the day he was born, instant expansion
as I looked upon his face, felt
the heat of his new body burn
my hands as I held him.

Would the students who gather and gaze
at my fragile egg of a heart see
the fine cracks feathered faintly
like a net? Each fine line
a record of days, despair and disappointment
tap-tapping a pattern
on its walls until only a membrane of will
holds it together? Would they see the scar tissue
tough like rind? Bruises
deep purple and still pulsing.

In my poor tired heart, there is a chamber
carved out like water does to rock,
worn down and empty from each wave
of terror that sluices through
when he is ill, when his body seizes,
and his mind retreats, reboots,
when I sit in waiting rooms, doctors’ offices,
beside pulsing machines that scan and probe
his brain. Perhaps someday a “why”
will work to heal this crack in my heart,
but if not, scientists will marvel
at the phenomenon that, for years,
my heart kept beating while broken.