Year Thirteen

3/4/18 | Today you turned thirteen years old.

For the second year in a row, you have strep throat on your birthday, so it is fortunate I didn’t plan that big party I have imagined but never held. You lack the ability to tell time, to know what a minute, an hour, a day, a year is, and so I am able to squirm off the hook. A few days ago, while you played in the bathtub with your cars and toy bears, I whispered to your dad about how I’m disappointed in myself, how I let my own ambivalence about your birthday prevent me from providing you with a birthday event you would delight in–trampolines, bowling, maybe visiting dogs at the Humane Society–, because you never realize what you are missing. Some days I think I should not be forgiven for the ways I skirt around motherhood like it is a fire I cannot get too close to for fear of getting burned. I am sorry that I cannot fake it better, even for you.

I thought yesterday that maybe we should just stop celebrating your birthday altogether. What a relief that would be. I wandered around the toy store looking for gifts to buy you, and keenly felt the pointlessness of my effort. Aisle after aisle, there is nothing left for me to buy. We own all of the toys for babies or toddlers that might interest you, and everything else is, well, not for babies or toddlers, especially one who is 90lbs and nearly as tall as my shoulder. I bought some foam blocks to add to our collection because Legos frustrate you and anyway you cannot imagine the castles or spaceships you might build, that might spirit you away. I bought a dog-shaped sprinkler for when the weather gets hot again, because you still love water as intensely as when you were a baby. There is also a Thomas & Friends train track. We will wrap your presents and you will thrill at the unknown even if you barely pay each gift itself a second thought after opening.

On my drive home from the store, a fragment of what I thought was a poem flitted through my mind: “…I put away childish things….” I thought perhaps it was Kipling, but a quick online search and I was reminded the line comes from First Corinthians, the Bible’s chapter on love.

11 | When I was a child, I spoke as a child, I understood as a child. I thought as a child; but when I became a man, I put away childish things. 12 | For now we see in a mirror, darkly, but then face to face. Now I know in part, but then I shall know just as I also am known.

You won’t have that opportunity, I suppose, to transition into a man. You’ve just barely become a child. At six feet you may be six, if we are lucky. I don’t know what constitutes a teenager, an adult: is it merely years on the earth? Must we also have our years and our body and our mind in sync as well? Who would have thought, thirteen years ago that this would be our reality. I feared, but I couldn’t have known. I’ve stopped trying to predict our misery; and yet, holidays release a predictable, yet still relentless, wave of depression that subsumes me before I can anticipate its arrival. Even as I know that birthdays don’t change anything. Yesterday and tomorrow, we are the same.

When you turned one year old, I wrote to you in a journal I once thought you might read: “I am so ambivalent. You are not what I expected and yet you are everything. In many ways, you are as puzzling to me as you were the day you were born and yet I know you as well I know my own body.” In thirteen years, those words are as true and as bittersweet as when I wrote them. It seems that as you grow, the mirror will remain dark, and I will still only ever have a partial understanding, a glimpse, of who I am and who you are to be.

In the coming years, whether we count their passing as worthy of celebration or no, our little family will stumble along with our good intentions in the lead, hoping to get this one life right at least part of the time. Enough will have to be enough. I can forgive myself for not yet telling you it is your birthday this morning, for not throwing you a party, for not knowing how to raise you all of the days in between the years. The rules became inapplicable to us so long ago. And I can accept, because I have to, because I’ve learned I have to, that I cannot guarantee you a safe place in this world. Age will not bring you independence, but I will joyfully keep you by my side as long as I am alive to hold your hand in mine.

Perhaps every year, I should be celebrating my birth day on yours. Your birth, your life, has sculpted me in ways I innocently, naively, could never have imagined. I dreamed of castles, an idyll, but was rewarded with something more elementary. I was reinvented at your birth. And now, after thirteen years of growth, I can say with certainty I need never have worried as I did then that I wouldn’t love you. Or as the seizures came, as the disappointments came, that I couldn’t love you. If there is one star that shines brightly, inextinguishable, in the dark and fathomless sky of our future, it is love.

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.

Hold

I love my son most when we are alone and he is quiet. I hold him–a heft and thickness to his limbs now that surprises me though I’ve watched him grow, inspected him even, twelve years now–against my chest and the ache of loving him burns through my center like I’ve downed a tequila shot and eaten the lime whole. I want to fold him back into my belly, return him to his point of origin. I could be his chrysalis. I could rebirth him and give him a chance. I could rebirth him and give myself another chance. It’s not romantic, but this special kind of motherhood rarely is. It’s pulsing blood in my jaw and nerves revealed only in the twitch of my eyelid. It’s still shit and drool and too-sharp nails and sometimes bites and lots of shame, and twelve years of tiredness that makes my body ache and all I can do is lay myself on the floor and wait to feel myself again. I’ve read that the center of a star is held together only by the force of its own gravity.

Hysteria

I lift heavy weights because I can no longer lift my son. I’ve grown stronger over the past year: my quads have a stone-like quality under the skin and fat. I think of myself as an ice cream cake. Hard center, soft exterior. I enjoy the bulge in my bicep. I like to flex and find the crease between bicep and deltoid. But I still cannot lift him. I work at the gym for a month or more and I injure myself. Elbow, wrist, knee, back, and have to pull back my training for awhile until that injured part of my body heals, and then it’s up the hill again. But I still can’t lift him. He is now 100 pounds which is a lot but still little, and yet like the proverbial sack of potatoes, N doesn’t know how to use his own body to help me. I think of figure skating pairs, the man lifts the woman, but it is the woman’s core, the woman’s complimentary tensity, that assists in the lift and lightens the man’s load. N just hangs, an armful of wet towels. There isn’t one moment of hysteria; it’s a slow drip of hand-numbing anxiety: this could be it. No matter how hard I train, how strong I become, I might never be able to lift him again.

And again I can see her on the distant shore, the maybe other me who might decide not to feed her son in order to keep him small, in order to deny him a growing body because his mind does not keep apace. She thinks of him as a baby, she thinks of him as a toddler, she thinks of him even last year when he was eleven, when she could still lift him. No, that’s not right: she wishes for him to be again eleven. Is this empathy for the woman who tosses her child off a bridge, or the man who engages a shotgun to keep the future from ever arriving for his child and then himself? Is my fear of the future and my inability to keep lifting my spirits, my hope, just hysteria? There was a time when it was still ok for him to go and play on the playground, because he was small. There was a time when it was still ok for him to climb into a shopping cart and ride instead of walk. He is small for his age, but it is only a matter of time until he is taller, thicker than she is, stronger, and she fears that’s when the hyena she hides will burst from behind her hyoid and devour all hope. She is certain that when he is 14 and 17 and 22, he will still want to play on the playground, ride in a shopping cart: it makes her sick how his world will get smaller as he grows, it makes her pulse with a keening need to keep him to stay small. For there to be symbiosis between his mind and his body. She is a mother who might do whatever it takes to stop time.

So instead I try to grow. The longer I can lift him, the longer he can stay little, and there is little chance I will become her.

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.

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.