A Meditation, on Noah’s 12th Birthday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

The Shadow

Between the conception
And the creation
Between the emotion
And the response
Falls the Shadow
Life is very long

~T.S.Eliot

One of the habits, or maybe disciplines, that you develop as a special needs parent is to look on the bright side, or at least, focus on the positives while rationalizing away what’s painful. Another of the habits is to be selective in how much of the shadow you are willing to show publicly. It’s a fine line between owning your emotions and being owned by them, but I suppose that’s what being an adult is largely about. I’m so proud of the kid that Noah has become, and I’m so relieved at his excitement at getting back to school. For how hard it is for Noah to learn, he loves learning.

For me, it was a hard, hard day. 6th grade should be an accomplishment– middle-school! tween! can you believe it? –but instead it’s a reminder that my 6th grader is a preschooler, and my preschooler is a 6th grader. And I think it’s important to…oh, I don’t know…sometimes show that it’s possible, but also a hell of a lot of work, to hold both the joy and the sorrow of my child’s life in my heart at one time.

All of us, at some point in our lives, confront loss of control over that which we desperately want, or at the very least, confront our inability to insure that the lives of those we love most will be as ideal as we wish for them. I hope Noah has a kick-ass 6th grade year, and I will, no doubt, figure out once again how to celebrate the ways that he gives so much more than he takes–which is really all we can ask of ourselves and our kids.

But today? Today is about making it through the hurt instead of denying that it’s there.

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.

Charades

Sometimes it shocks me how much other children talk. I’m just not used to how much little kids can say with their high little voices, bulleting out words, often so stream of conscious and unrelenting as to wear me out just to overhear. Today, I am struck by this in a public restroom. When I picked a stall next to one housing mother and child, and the child is talking all through the whole procedure of peeing, it astounded me. My 11-year-old son doesn’t yet pee in toilets, dependent still on training pants. (I worry he needs more disciplined parents to get him over that hurdle, but oh lord how we have tried.) But he also doesn’t yet speak. At least not in a way you would call speech.

Certainly he doesn’t talk like this little girl in the stall next to mine. She talks about the pee on her leg, and the amount of toilet paper she would like to use, and how cold the snow is when she doesn’t have her mittens on, and how she would like pink mittens please. Her mother reminds her that her mittens are pink, and she replies, “of course” in a way that is clearly mimicked, but also makes her sound world-wise and somehow forgetful.

When Noah notices a color, he says “yellow,” which means “color,” but also might mean “yellow” or maybe “blue.” Yes, he says “tired” and “no tired” and “up” when he is sleepy or not sleepy, but that’s about as revealing as when a dog sits by the door wanting to be let out. This may seem ridiculous, but when we first learned that Noah might never talk, I thought I might be ok. Worse things, right? After all, we’ve owned dogs for years and I’ve had fruitful and loving relationships with each them. Hardly. We only want from dogs what they are able to give. We want more than companionship from a child. With a child, we want to see ourselves. We want proof that everything we put into him has developed his inner self. Then we want to know that person. It’s a gift to know your child, for your child to give you more than you gave. This life? This life, well, it’s more like living in an echo.

Noah calls himself “No-nah” or “No-no” depending on the day, but he cannot say his own name. Can you imagine? Eleven years, and you cannot say your own name. Nor has he been able to learn to say 3 words in a phrase that might shape a concept for us to grasp onto. If he has an imagination, I don’t know what he daydreams about. I don’t know if his stuffed animals have names other than “bear” or if he could parrot a conversation between two adults in that way of not understanding context that kids have. “Kids say the darndest things” and “out of the mouths of babes?” Oh well. Why long for something that can never be had?

Still. What would it be like to have a child who talked? A child who talked about nothing and everything? Whose brain, whose daily life, I could have some access to? That’s the hardest thing: to not ever know anything about this child beyond what I can witness. Sure, parents are all bystanders to our children’s lives, but what if he could give me access to his thoughts, his dreams? When he wakes up crying in the night, I do my best. I guess it was a nightmare. Or maybe he feels sick? But I can’t know. When he falls, I try to detect where he was hurt through trial and error–“Is it your foot? Your toe? Your leg?” while he points to his mouth which he obviously didn’t fall on–, but it would be that much easier if he told me what hurts. No, not easier, it would be…more like mothering to know what my child feels when he feels pain. Then I might know how to fix it.

People tell me I know my son better than anyone else. And while I suppose that’s true, it’s also the farthest thing from the truth. And very little comfort. I don’t know him, because much of what I know is what I tell myself, not what he tells me. Sure he can ask, “Why?” or say what sounds like “What job?” but might be “What’s that?” But it’s not like he can tell us a story about something that happened at school that day, and ask, “Why did that kid do that?” or “Why do they always serve Fruit Loops for breakfast?” or, “Why can’t Ms. H be my teacher forever?” The list goes on and on.

Can I understand what little he can say? Yes, a lot of the time. Certainly more than other people in his world, even those who love him best. I can reinterpret his utterances, his hand motions, his defiance. I can translate his few words into concepts others can grasp. When we are walking through the grocery store, and he points to a stock cart, and says “truck” in that way he does, and looks at the stockboy with a smile, I can explain, “He loves carts.” But when I think too much about it, about his inability to communicate with people other than me, the limits of how much he can explain, declare, ask, prevent, well, I go a little crazy. Someday he will be 50 years old and I will not be alive to translate for him. And who will protect him then?

It’s lonely for me to be with him, and I wonder if life is lonely for him too. I wonder if he has all these pent up words that he really wants to say, that would spill from his lips if his brain could speak to his mouth in a way that produces words. When I ask him how his day was, and he gives me the ‘thumbs down,’ I can’t know if he is thinking over his day at school and truly assessing it, or if he is only thinking about the last thing that has happened, or if he is being silly and saying that the day was bad when in actuality he doesn’t have the deductive or summary skills to know. So I guess in one way it is good that his brain is pretty limited in its cognitive ability too. Maybe he doesn’t wish to say more because his brain doesn’t really produce more that he desires to say.

But somehow I doubt that. Maybe he doesn’t have much to say, but I’m pretty sure that if his mouth and lips could form “I don’t want to go!” or “Can I have ice cream?” he would like that too. Even if he can never tell a story, I suspect he would like to tell a joke. And I suspect he would like to ask your name, say “Good morning,” ask for pink mittens. We introduce him to other methods of communication– ipad apps, sign language, push button ‘talkers’–, but he’s so singularly interested in speech, despite the struggles, that it is his default. He tries, we try, and all we can expect is to get somewhere close. There is no target beyond almost.

I’ve likened life with Noah to an unending game of Charades. That seems uncharitable, and of course minimizes the gravity. But maybe because I need it to. He produces sounds, and then it’s our turn to do the work. We offer him options and wait until we hit on one that makes him nod his head yes. And just like the game, we cheer when we guess correctly; we may even smack the sides of our head with an open hand, and say, “Oh duh,” because it has taken us so long to figure out he wants peanut butter, not butter, on his toast. And then Noah too echoes, “Oh duh,” and laughs at our stupidity, like he’s never expected us to understand him, like he’s any other child who thinks his parents are barely tolerably intelligent. And then, very likely, he will not eat the peanut butter toast, because that totally was not what he meant. But how were we to know? It’s a game we can simply never win.

I am a Woman

If I were a man, maybe I’d be the kind of man who hits women, who snaps and shakes a baby, who drags his child by the arm across a parking lot. If I were a man, maybe I would have left my son by now. Dead-beat dad. No ties to bind. No evidence to cover up. No silvery stretched skin bearing the proof. Maybe I’d be the kind of man who leaves because staying means feeling, and feeling means staying.

My emotions come on too fast and strong. They gather in my chest like an itch. I feel a pillow over my face. A cover over my coffin. I feel the tingle of adrenaline in my hands and fingertips. I feel a punch in my fists. I want to lash out, just to slow everything down, quiet it all, perhaps shock myself into silence. I feel an urge in my thighs to stretch, expand, put miles between me and what I might have done if I’d stayed.

My love for Noah is combustible. Powder and strike. The intensity of my love threatens to stoke my gasoline-soaked heart into wild flames, and I want to beat it to the punch, fight and flight. But it’s no good. I am a woman. And I am his mother. Presence or absence could land the final blow, scrape against flint, phosphorus and sulfur smoke. I have no choice but to wrap my arms tightly around him, prevent the distance that allows for a leak of oxygen to snake in and fan my fears, and, against my better judgment, I stay.