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.

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.

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.

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.

Antithesis

I wrote you a love letter
but all you saw
were lines,
chicken scratchings
from my pen.

I played you a love song
but all you heard
was the hum
of strings straining
under the bow.

I gave you a gift
but all you saw
was yourself
because you forgot
to get me one.

I kissed your palm
but all you felt
was what my mouth
said out loud to you
on Tuesday.

I looked at your face
and all I saw
was twenty years
of you not knowing me
at all.

We glimpsed your death
and all we could do
was stare
it back into its cave
until spring.

Something We Ought to Do

It began to snow, and I thought we should do something that people do when it snows. So we laced up stiff boots, leashed up our dogs, and made for the mounds of white that had already turned our neighborhood into a movie set, like Jimmy Stewart might come shooshing down the sidewalk (in a parka and cross-country skis instead) and we will sing, “Buffalo Gals, won’t you come out tonight, come out tonight, come out…” Or maybe you are Jimmy and I am Donna Reed, and if you were romantic, you’d promise to lasso the moon, but instead, you are quiet and maybe just following along.

The fresh snow–white and silver glitter flickered in the streetlights, layered on the dogs’ backs like inadequate sweaters–, ahead of us was still untouched, ready for our pack to leave tracks, evidence we’d come out into the world, rather boldly into the cold, because sometimes life becomes a movie scene when you venture out into it.

It ended the way most things end. No matter the splendor, my toes got cold, and I got tired of the fleet wind on my face, before we’d even crossed halfway into the park. No doubt you had more stamina for the weather; nature never seemed to dismay you like it does me. So I posed a plan as I so often do: Let’s take the dogs home, I suggested, and walk a few more blocks to that Italian restaurant on the corner. We’ll walk there, like people do in movies, like people who have a watering hole. God knows, we live in Milwaukee; it’s a shame not to have a corner bar to call our own.

The restaurant was warm and warmly lit. Amber lamps glowed on polished glasses lined up on the bar. My wine was red and your pasta thick. It made the walk through the snow and the park in our early-winter stiff boots all the more idyllic, like there might be movie music soon swelling, and the speed of the action would slow just enough to draw out the moment before the two love interests kiss. Eating eased your irritation with me for pulling you out of the house, like a dog on a leash, to fulfill these ideas I have of things we should do, because it’s what people do, and not always because I long to do them.

Things change as they so often change. Those dogs are long dead, and our black and white mutt hates to get cold or wet so there is little point in going on a leisurely walk in the snow with a dog that prefers dry paws. But I suppose he isn’t too unlike me. I only make myself go out if it seems like something I should do. And sometimes it’s worth it because of moments and memories: that night, that snow.

Now, you can’t be out in the snow, well, the cold, and no sun for you either, which makes going out in March in Milwaukee nearly impossible. Maybe in summer you can walk through our park before dawn, before the sun is up. Photo-sensitivity from the chemo is a danger, but so is everything, it seems.

I shouldn’t have been worried that we’d run out of scenes. Sure, we don’t amble about the neighborhood much any more. But when the doctor told me you had leukemia, I wondered what my next lines should be. And when I told your parents, who had already lost a son, that their son had leukemia, I don’t think I was speaking, but my idea of speaking the words was doing the miserable work for me. So many moments these days, when it is easier to become the watcher and the watched.

All through this past year, I’ve put myself in widow’s dress time and again, but it seems as though you’re going to make it and it’s funny how I know less about this old role of being your wife than the one for which I’d been practicing unwritten lines. We have a man from Europe to thank for his stem cells, for your survival. And maybe someday we will meet him–A handshake? A hug?–just like in a movie. It’s definitely something we ought to do.

Lamentations at the Tomb

The smell for one thing.
Open the door and the odor
of mold hits you square
in the face. Say you
forgot something. Find sanctuary
in your car, your oh-so-clean
car, even the lingering smell
of McDonald’s lunch a relief.
(It was a long drive
to Dad’s. Only one reason
you rarely made it, traveling along
I-90 through LaCrosse, a glimpse
of the Mississippi and glacial-less
bluffs beautiful, too brief.)

The smell is the basement’s
annual spring flooding,
destroyed drywall downstairs. Descend
the wooden stairway
of the rectangle ranch
you grew up in. The extent! Weird
enough what he had saved. A baby
carriage, Lite Brite,
one of a pair of Rock ‘em Sock ‘em Robots,
school papers and child art, wilted with wet,
stacks of books, pages dried together
like shipwreck survivors
clinging to one another,
a Mexican tooled-leather purse, an old one-eyed bear, your hope
chest. All eroded
by the creeped-in water, not just
this year, but years. Saved
yet not salvaged.

Bugs, but you see those. Sills pilled
with Japanese beetles that look
like harmless ladybugs, but have their own
particular stench if you touch. Daddy
longlegs weaved homes into corners,
fly corpses suspended. The black
and red armor of boxelder bugs
in every corner.
Rodents too. Holes chewed
into walls. Insulation seeps out
like dirty cotton candy. If you are brave
enough to look for a water glass, you will see evidence.
Of mice creeping in and out of cupboards,
over mismatched dishes, Tupperware,
weaving amid yellowing boxes of
Morton’s salt, Hamburger Helper,
and amber bottles of pills
long since emptied.

Also you see your vain
efforts to help. Not enough
in the end, or maybe since
the beginning. You hand-wrote recipes
and taped them to those cabinet doors,
yellow now with age.
A soft blanket
you gifted at Christmas, crusted
with spilled food and obscured by 
shed dog hair, spread
over a sofa. The nice television is still nice, but
the pale blue recliner you bought with your brother
has gone limp with overuse. Strangely
you are reassured
that the casket you both chose
is quite lovely, pale blue satin to match
his eyes, though his eyes,
you both agreed,
were donated fast.

(There was nothing
you could do. There was everything
you could have done. But anger, well,
its seeps and rots too.)

Here there is no resurrection
long in coming. Roll the stone
away, and there is only a failed shrine
to keep your mother’s memory alive, what she left
before
she died. He shut his eyes
to decay in favor of dreams of days
when her collection
of tea cups, washed to gleaming,
posed on the polished table, debutantes awaiting
the Ladies’ Aid. Maybe he remembers
how he would cross the kitchen
in farm boots of hard leather, and steal
one more cookie, maybe the same kind
his mother had made
him when he was a young boy
coming in
from the fields.

(You will never know.
You will never stop knowing.)