To Swim is to Fly

Many years later, Cindi Peterson and her husband would buy up what remained of my father’s acreage when he died in considerable debt and my brother and I couldn’t afford to keep the farmland or the homestead that had been our family’s for three generations. The Peterson’s had tended the land for years and paid out a percentage to our family, and I now realize that must have been the little bit extra that kept us afloat, if afloat is what you call it. But when I was a little girl, Cindi Peterson tried with great tenderness and persistence to teach me to swim.

There are grainy 1970s photos of my brother and me at the Northwood swimming pool either before or after our swim lessons with Cindi. I was usually in the kiddie end, sitting on the shallow steps or holding onto the edge grinning up at my mother as she took pictures with our brownie camera. My brother was usually a bit deeper in, swimming away, but still looking at Mom, he and me still young enough to be playmates. Other pictures star Cindi. I say “star” because she had charisma, a certain 70s housewife cum pinup look that made you look.

I thought Cindi was a bombshell for all I knew about bombshells at that age. Perhaps I’d started watching Charlie’s Angels by that time so I thought Cindi had a kind of Minnesota farm version of the Farrah Fawcett brand. Except Cindi was large. Her arms and legs and torso were round but not at all flabby. Her bosom (because it seems completely accurate to describe her swell of breasts as a bosom) strained against the low curved neckline of her white swimsuit. And she was tan, the color of a gleaming chestnut-coated horse. The depth of her tan made the white of her swimsuit glow in the shimmering blue pool water, and her white blond hair, waved and feathered, sat atop her head like a dollop of whipped cream tops off a luscious dessert.

At least that’s how I remember Cindi. It sounds romantic, I know. But she was so very different from my mother. My mother who wore pantsuits and owned but didn’t wear a swimsuit. I had found it once in a hallway drawer where she kept table linens and embroidered handkerchiefs, the kinds of items you kept but never used. If I reach all the way back into my memory, or the memory that looking at old photographs imprint on us, I think she may have worn it once, at a lake, on a family vacation when us kids were very young? It was yellow and gold floral and made from a heavy, plastic-y fabric. I think it had a bit of a skirt. And even when I’d discovered it, in a drawer amid tablecloths and guest towels, it seemed to have no utility. I don’t remember her ever joining us to swim in the pool. My mother had had diabetes from a very young age, and was very careful about exposing her feet in sandals and never didn’t wear shoes, for fear of injury because she couldn’t feel her feet well. But I don’t think I remember her ever going fishing with us when we took those family vacations at Leech Lake either, siting in the boat as we threaded worms onto hooks and learned the difference between walleyes, northerns, and bullheads. While she never said she was afraid of the water, now I wonder why she herself didn’t teach us to swim.

That was left to Cindi, the neighbor lady who gave kids from the area lessons. I remember how she tried to coax me to trust the water. As with most things, my brother had no issues with swimming. He would soon pass the test that allowed him under the ropes and buoys and into the deep end. Soon some of the neighbor boys would come with us to the pool, and while my brother and his friends wrestled in the water like puppies, I laid my head back against Cindi’s bosom as her hands supported my hips to suspend my little body perpendicular to hers. But the minute she removed her hands, I went from being on top of the water one second to piking down in fear the next, wanting my feet touching the bottom of the pool. Or if the water was too deep, I flailed at her, grabbing at her taut, tan skin for purchase, holding her close. Floating was simply something I could not do. Cindi taught me a lot about the water the way any teacher starts with the ABCs — I learned how to blow bubbles, tread water, how to kick while holding onto the wall, and then how to use a kickboard and leave the wall behind. But she was never able to teach me how to use the water to suspend my body when she wasn’t there to assist.

I have never been afraid of the water, so those early lessons accomplished that at least. I’ve never not wanted to don my suit and jump in on a hot day. Or take a boat ride. I could jump off a dock at our cousin’s cabin, do a front flip at pool, and even perform a handstand of sorts, because those moves only required me to hold my breath a few seconds, mouth closed, nose pinched. But I could never just float. Or so what we called the American crawl well enough to pass the deep end test. And I certainly never got up the courage to dive in head first, or even jump off a diving board. Except that one time when I was a preteen and a camp counselor and the long line of kids standing on the ladder behind me forced me to jump and I still remember feeling like I would never rise to the surface.

Swimming is just the start of it, a thing I can almost do. I have never ice skated or ski-ed or even slid barefooted across a wet floor like my brother and his friends did when my mother washed the kitchen linoleum. Having to give up control or lacking faith in my body to react, to stabilize me when met with unpredictable physical influences of water or speed or slickness, has always been…an impossibility. There are other things I’ve always been afraid of. Heights is one. Bridges is another. Singing in front of a crowd, or anyone. Asking for want I need. Or what I want. Because I’m afraid the act of asking is the same as admitting weakness. And now that I’m older, middle-aged at best, I’ve grown afraid of my body in a different way. Once I was afraid my body would embarrass me, that it would get injured; now I’m afraid of how my body will communicate to me that I am dying, soon to be out of the time I need to stop being so afraid.

It was probably 1981 or 82 when I had my first major surgery to correct a length discrepancy in my left leg compared to my right. Physical therapy wasn’t as accepted as necessary for healing that it is now, but my mother must have talked with Cindi and come to an agreement. By then, Cindi had an above-ground pool on their farm, their driveway about a 1/2 mile down the gravel road from our driveway. So I spent a couple of visits to Cindi’s pool, not swimming but walking slowly through the water, using its resistance to strengthen my weakened leg. But our relationship had changed. I was awkward around Cindi now, much like I had become awkward in so many situations. Despite an open invitation to use the pool any time after those first instructional visits, I didn’t go back.

Thirty years later, when we were preparing to sell my father’s farm, I still thought fondly of Cindi when I thought of her at all. I knew the rumors. People said she’d gotten nasty. That she dictated the terms of their family life and her husband was no more than a pawn to her demands. People said she carried around a shotgun, and sometimes, ironically, shot it at trespassing hunters. I seem to remember Cindi coming to my mother’s funeral when I was 12. And then my father’s — no, that seems impossible, but surely she would have? — about a decade ago. She must be, what, 70 by now? But Cindi with her white-blond hair and white-white suit and beautifully browned body is how I think of her, and I think of her often now because we take my son to the pool whenever we can. He loves the water. So when I get a whiff of that signature scent of chlorine and suntan lotion that makes you feel 6 year old again, I think of Cindi. And I bet all those rumors about her are untrue. She may have done all of those things, but those rumors have the scent of “who does that woman think she is?” rather than a woman gone rouge.

For years, I just let my husband, Mark, take our to the pool. But when he was a year or two old, I enrolled Noah is a baby class at the frigid pool of the neighborhood high school. It’s what you did when you wanted to be a good mother who could check off another line on the long list of things good mothers do. Teach your child early not to be afraid of the water. Babies, we were told, instinctively knew to hold their breath underwater. And Noah certainly did. The pool was so exciting for him. He held his breath; he kicked his legs. He splashed his hands against the surface of the water with an energy that he didn’t use for much else. He didn’t reach up to play with the tiny stuffed fish we hung from the handle of his car seat. Instead of stacking wooden blocks on the tray of his high chair, he just pushed the blocks off onto the floor. We already knew he had “low tone” — that’s what the internet called it when I searched for why he wasn’t able to hold his head up and balance on his little elbows like every baby did for their first mall photo shoot. The photographer had to roll a small washcloth under his chest to lift him up enough to look like he was looking toward the camera. And we knew he wasn’t meeting milestones. But some kids didn’t, I was told. And often baby boys didn’t. So I tried to be the kind of mother every other mother I knew tried to be: a good mother who put her worry aside and took her baby to the pool.

Soon Noah’s love of water — pool, bath water, play table, sprinkler, fountain, hose — irritated me. Not because I begrudged him his joy, but because it was a sign. Autistic children, children with a diagnosis, loved water. They loved water, they loved lights, they love to put toys in rows, they love to make things roll and fall. I watched Noah like a hawk. How many more signs would there be that there was something wrong with him? Every cute thing he did that someone might comment on, “Doesn’t he just love the water?” for example, made me sad. As the months went by and the other babies we knew added skill after skill, all anyone could really say about Noah was, “Doesn’t he just love the water?” One afternoon after our swim class, I was carrying Noah across the cement locker room floor after rinsing ourselves off under the showers, and I slipped. I fell awkwardly because I rearranged my body to protect his. We were both fine, but I hated slipping. I hated feeling out of control. And I hated that Noah had been in danger. It would be the last time I took Noah to the pool by myself, and Mark, who loves the water anyway, became the default swim parent.

Until Mark got leukemia, that is. During Mark’s initial treatment, there wasn’t much call to take Noah to the pool. Mark got sick in July that year, underwent numerous rounds of chemotherapy, and had his transplant six months later. Friends or sitters would take Noah, who was ten, to the wading pool while I was at work, but there wasn’t time to do much beyond holding our lives together that winter. One of the more terrible side effects for Mark of having leukemia and getting a life-saving stem cell transplant is that he has to continue, even in remission, even if he becomes technically cured, to try to lighten the burden on his immune system. With that consideration, Mark stopped teaching. And with that consideration, Mark had to stop swimming.

But that didn’t mean that good mothers don’t do the right thing, even if they hate swimming, so I once again enrolled Noah in swim classes. These classes were adaptive swim classes, and I had had ten years to get used to life, however reluctantly, with a special needs child. The woman who taught this class was large. Unlike Cindi (though her name was also Cindy), her skin sagged low off the bone, and her suit, a muddled floral top with a muddled purple skirt, amplified her pale skin in the pale light of the middle school pool. Because Cindy had other students, and Noah was unable to be safe in the water without assistance, I got in the water with him. And that was fine. He wore a safety belt and was buoyed by the water, and I had my feet on the ground. I could lead him through the exercises, Cindy showed to us while she worked with the other kids. But the other kids, they were skilled enough to practice by moving up and down the length of the pool no matter how slowly. Cindy wanted us to do the same. And so did Noah. And I … was too prideful to limit us only to where my toes touched. In five feet of water, my five foot three inch self could just keep my chin above the surface. Beyond that, I would not only have to guide Noah through his exercises, but at the same time, I would have to keep myself afloat.

Much like when I was a child, I could manage to tread water for a short amount of time. And since, when staying in hotels or even going to the local pool with Mark and Noah, I had been very willing to get in the water, even doing a sort of dogpaddle/applebasket stroke that mimicked swimming, could take me from one side of a pool to the other, and most importantly, keep my head above the water. But problems arose as we moved into deeper water. The pool depth went to twelve feet, so getting to the five foot mark wasn’t even half way down to where Cindy laid out all of the practice gear like kickboards and tubes. Also, twelve feet was where Noah wanted to go too. Noah’s love of water had continued to grow as he did, and his very favorite thing to do is to jump off the side of a pool into deep water. He loves to feel the impact of the water, hold his breath until he comes to the surface. He practices holding his breath in the bathtub, able to push his face beneath the bubbles and hold it there for nearly 15 seconds. But what the hell was I going to do once I couldn’t touch the bottom of the pool? Keeping myself afloat was one thing, keeping Noah afloat so he didn’t have to hold his breath beyond 15 seconds.

We would stay near the side of the pool. I would be able to grab onto the edge with my left hand, while assisting Noah with my dominant right. If he started to swim too far away from me, I could grab onto his flotation belt and drag him back with me to the wall. It was inefficient, but we managed. It was exhausting, but at the end of every class I felt more deeply connected to Noah. I had helped him do something he loved, while we held on to each other doing it. Cindy was there to rescue us if I couldn’t manage, but I was managing. Eventually I began to take Noah to the recreational pools my myself. We rarely ranged beyond five feet, but that was deep enough for me help him get up out of the pool and jump back in. Over and over. Then we would ‘swim’ to the toddler depth and back, practicing what we learned from Cindy. A few times we pushed our limits, but the minute I felt unsafe, I would tense up, maybe swallow some water, and I simply became scared.

One of the ways I’ve learned to cope with my anxiety — an anxiety that I’ve described to my doctor, my therapist, my friends, as feeling like I’m in a closed room that is filling up with water, and there is only an inch or two between the surface of the water and the ceiling from which to draw a breath, and I’m so, so tired of trying –, whether that’s anxiety due to having a disabled child or simply being me with my brain in my body, is by being brave. Being scared comes naturally to me. I’ve been scared since I was a child. I was scared when I had surgery. I was scared of my body. I was scared when my mother got sick, I was scared of her body. I was scared when Noah started having seizures. I was scared of his body. (Let’s face it, I still am. At 14, his body is doing all sorts of crazy things I’m not convinced I signed up for; and at 48, my body is doing all sorts of crazy things that are at best a nuisance, and at worst, a reminder of my mortality. I have always been scared off all the things that could hurt us, internal or external. So now, within reason, I do things that scare me. I’m not talking about bungy jumping or even roller coaster riding. But I try to show up. I have tattooed “Be brave” on my forearm to keep me honest.

To confront my childhood fear of singing in public, I now give work speeches in front of groups. To work on my fear of failure and rejection, I submit my writing to magazines and agents. I have even cooperated with my fear of heights by taking a trapeze lesson. (I did it, and don’t ever need to do it again.) I recently declined a sunset flight in a two-seater airplane with my friend’s husband for a pilot, and the next day I regretted saying no. I can’t say for certain I would say yes should that opportunity be offered again, because I can’t imagine calling Mark and Noah and saying, just so you know, I’m taking a huge risk with my life and I apologize if I don’t come back. But I’m kind of proud of myself for even thinking I should have said yes.

And I can credit all sorts of things for why I am able now to take risks that, as a child, I shrank from. But I have Noah to thank for valuing bravery rather than prioritizing my fear. Every day that he had a seizure and we had to pick up the pieces of our lives and pretend we hadn’t just had a bomb set off in our home, I learned to be brave. Every doctor’s appointment when some test could tell us some very bad news about our son’s future, I had to be brave. Every time I had to hold him down for a procedure, I had to tuck my fear away. And when I think of this young man, now fourteen, with the cognitive and physical abilities of a toddler and confront the depth of my love for him but also my deep sadness over his unrealized potential — which is every.damn.day — I have to be brave. I owe my bravery to Noah, and I try to show up for him even when I want nothing more than to hide.

Which explains why, this past Fourth of July, I got it in my head that Noah and I should go tubing on his grandparent’s lake. Mark’s sister and her family kept their motorboat docked there and Noah’s cousin, just 6 months older than he, wanted to take a large inflatable “chair” out on the water. Despite Mark’s parents having lived on the lake for years now, we rarely went out on it, and we never swam in it. And that’s often a point of contention between Mark and I — Noah loves the water, so why can’t he swim in the lake? Of course, in my heart, I know why. Noah can hold his breath and such, but he also swallows a lot of water and doesn’t really recognize when something is dangerous, so he could step on a sharp rock, hit his head on the dock, eat lake weeds, what have you. But! In the name of bravery, and fairness, and not acquiescing — I said, Noah and I want to go tubing as well!

Tubing is a thing I have never done. Water skiing is a thing I have tried once as a kid, got dragged on my face after never truly standing up, and never tried again. Boats are fine for fishing out of, but I’ve never driven one so know little about the physics. I’m even a little awkward wiggling myself onto a circular floatie in order to just sit on one. But this big seated “tube” tied to the back of the boat? I’m sure we can do that. And, I think, everyone must have thought I knew what I was doing rather than just being brave, because no one gave us instructions and I assumed that being towed was just like floating on the water but at a faster clip.

After stuffing ourselves into safety jackets, Noah and I got settled onto the tube. I noted that there were no seatbelts likes on a carnival ride. Which, of course. Being belted into something that could capsize would be a very bad idea. I found the handholds, so that reassured me. But Noah doesn’t have the strength or occupational skills to hold onto a handle, so much like during his swimming lessons I held onto the edge of the pool with one hand, and Noah’s flotation belt with the other, I grabbed a handhold with my right hand to stabalize us, and Noah’s safety vest with the other. The first slow lengths as the boat pulled away from the dock seemed to indicate this ride would be a pleasure cruise. But as my brother-in-law picked up speed, the “chair” began to tip backward. I was unaware that this was par for the course. That we couldn’t just toodle along on the water at a slightly quick pace but instead we had to pick up speed in order to even out the raft and regain a horizontal position on the surface of the water. But unlike at the pool, Noah’s weight, now around 100 lbs was not buoyed by the water, but instead being pushed and pulled by centrifugal force. And that’s not even considering how I needed to manage my own weight which as about twice his.

What seems critical now — now that we’ve survived this trip around the lake that I will never volunteer us for again — is an understanding of the handsignals. While my brother in law drove the boat, my sister in law kept an eye on Noah and me. But she was also, in addition to our safety, interested in us having a good time. And for most people, having a good time when being towed by a boat is to go fast. The handsignal to go faster is a thumbs up. I assumed a thumbs up was an agreement that we were, at the speed we were at, in the current situation which really felt like a bad situation by the time we were too far to turn back, doing ok. So every time she gave us a thumbs up, I gave her one back. Which translated into, doing well, but let’s crank it up a notch. The faster we went the tighter I held on. (Again, science isn’t really my thing, so probably if I had relaxed, we’d never have been at a risk for being thrown off, but I couldn’t tell my brain in it’s panicked state that.) The faster we went, the more upright we could sit, but the more Noah slid into me until I thought we might get pushed off the side when the boat turned. And despite my stubbornness, and my inability to admit when I’m out of my depth, I eventually let go of the handhold long enough to drag a finger across my neck giving my most clear handsignal that I was done that I could.

Obviously we made it back to the dock. Noah and I played in the water a bit before we all went up to the house to bathe. My right forearm was so sore I could barely flex my wrist. My abs were so tired from trying to stablize us my ribs ached. As we walked to the house, Mark helping Noah navigate the steps, I admitted to all of my misconceptions and fears. He said, “Yep, that’s how I felt too.” Incredulous, I asked, “What? You’ve taken Noah tubing before?” “Last summer,” he said. “That’s why I didn’t want to do it again.” And of course I was put out. “Why didn’t you warn me?” I wanted to ask. But we were on dry land, safe, Noah had had an experience, and…I had been brave.

***

Tonight at my swim lesson, my trainer, Melissa, taught me how to do the breast stroke. For the past two weeks since I’d transferred to this new gym and requested a swim coach, we’ve worked on the basics of breathing while doing the freestyle (aka, that old American crawl.) The coordination of all of the elements it takes to swim freestyle laps correctly is still many of hours of practice away. I get it but I’m also easily distracted and when my mind wanders, so does my technique, and I either lose my bearings or end up with a mouthful of water. The reality of swimming is and always will be — unless you pay attention, you can choke or flounder or even drown.

My form while doing the breast stroke is ridiculously awkward, and I have to be careful not to laugh so as not to get water up my nose. The frog legs and the arm pull and then the “glide” … well, it’s easy to get off the beat like when Baby is first learning the merengue with Johnny in Dirty Dancing and she keeps stepping on his foot. But when I hit a groove for maybe five to ten yards, the exhalation of the breath underwater comes naturally to me and I’m hopeful that with practice I can not only complete an entire length of the pool while doing the breast stroke, but do it gracefully. Swimming feels like dance when you are doing it right. It’s effortful yet liberating.

But there is something else about swimming that distinguishes it from other physical activities. It’s the buoyancy of the water and the way you can speed up if only you relax. It’s the balance between tension and release. The years, they have begun to weigh on me. And I get tired sometimes of holding up my head and trying to draw breath. But I have learned, or at least I am learning, acceptance. I cannot change who Noah is, and to needlessly bang my head against the wall of our reality is futile. I cannot change anything about the past that led us here. And accepting him isn’t capitulation as I feared for so long. It just means you direct your energies in the right place instead of wasting your effort. Swimming is about maximizing your movements and not doing more than you have to. The more you push, the more rigid your body, the more rushed your motions. You simply have to work with the water, not against it.

When I explained to Melissa why, at 48, I wanted to take swimming lessons, despite being a “recreational” swimmer, I told her the story of tubing earlier in the year. That’s just one of the reasons, but I had certainly wondered as we banked through a turn and I thought Noah might go sliding into the water that I wasn’t sure how I might help him as we waited in the water for rescue. I also told her how my husband can no longer swim with my son, but my son still loves the water no matter how big he gets, and he needs me swim with him, not hang onto the edge. And I explained, maybe not in so many words, but in words that reference fitness and weight loss and non-impact exercise being good for aging joints, that I want to be in better control over my body. I wanted to learn to trust it. I wanted to stop being afraid.

To my surprise, the backstroke is the easiest of the swim strokes I’m learning, or re-learning. (The butterfly isn’t great on the shoulders at our age, Melissa tells me.) And it’s when I first launch back and float a few lengths of my body, before I begin to windmill my arms over my head and my feet flutterkick, that I began to think about Cindi and those days in the sun at the Northwood pool, my head leaning back against her shoulder, my back supported by her front, and her strong body smelling of cocoa butter gliding us as one along the water. In those seconds before she would let go of me and hope I could hold the position, I could believe I would one day learn to float. Over 40 years later, I no longer pike down into the water. I no longer fear I’ll fall. It helps, of course, that the lap pool only goes to 5 feet, so I’m never in danger of not being able to touch the ground. But I find I don’t want to feel the rough bottom of the pool beneath my feet. Actually, I find I don’t need to.

Visiting

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

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

More often during my hospital stay, I visited a little boy who had been badly burned. His toddler body was covered in white bandages until they were removed, revealing his brick red skin, shiny as a newly polished floor. He had curly strawberry-blond hair, so sometimes he looked to me like he was still on fire. I was drawn to him, maybe to my own feelings of nobility when I persisted in staying in his room while he cried, which was most of the time. Or maybe I just stayed to witness a pain greater than my own.

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.

Bent

The kitchen chairs–red vinyl seats and back, chrome metal base, like an S without a top–had become a hazard. The angled metal below our knees would sometimes give out, bend and the person in that particular chair would without warning begin to deflate, maybe be held in the air for that one split second before descent, like a volunteer in a dunk tank. My mother blamed my brother, leaning back in the chairs, all casual in his teen-ness, for bending the chairs, when shifting his weight and altering the physics of the thing. The same could be said for his presence in our household. All arms and legs and attitude shifting the air even when he wasn’t moving. The table was still sturdy, the chrome legs doubled pipes, and the laminate top resistant to stains and knife cuts. Some nights when I didn’t want to eat one of my vegetables and was made to sit at the table until I did, I would run my fingernail along the grooves of the chrome that ringed the table, chipping away at the dried food that had accumulated there over the years, that my mother’s well-intentioned cleaning never quite prevented. It was the same with the cabinets, pale wood, plain fronts, delicate metal handles that caught grime that hardened over time. There was a circle of worn-away varnish around each of the handles where she had used a rough sponge or a cleaning detergent too harsh and her error became visual to everyone so available for judgment. To me, there were items all over the kitchen that incited my fear. A coffee can of gathered leftovers scraped from plates stowed under the kitchen sink and saved for the outside animals. Another rusted can of rusted batteries in the bottom junk drawer below the overstuffed drawer of kitchen towels. Another can at the top of the closet with bullets for the shotgun that hung below it.

Bouncing Back

Cheers rise from the soccer field just over the hill. A bird wings its way across the sky. My breath is ragged, loud as the sun is hot on my bare shoulders. A light breeze fingertip-touches my right cheek, hurries a bead of tickling sweat into my ear. I bounce the ball two times. Catch the ball. Tell myself: no, you bounce the ball three times before serving, not two. Stick to your routine. Don’t rush. Deep breath. Bounce it again. Three times. Left hand sure. Bounce, bounce, bounce. Racquet in my right hand, grip slick with sweat. Listen. Don’t listen. Think. Don’t think. I wait. I go. My squat mom-body moves in practiced mimicry of the lithe athletes on TV who butterfly around courts around the world. During long hours of lying corpse-still next to Noah while waiting for his seizure-stormed mind to quiet so he might fall asleep, I visualized my serve, metronomed the movements. I lean forward. Take my weight onto my left foot. Ball held pressed against the Y-shape of my racquet right above the handle, just below the face. I lean back, take my weight on my right leg, bend my right knee just a bit, turn my shoulders. Look. Twist. Toss. But my hand is slow to release the ball, to shoot it into the sky, into view, to where that bird flew, to where now there is a cloud skittering. The ball arcs over my head instead, and I wing my left arm out to catch it. “Nope,” I say, talking to myself more than my opponent. “Sorry,” I say to her because politeness is a requirement of the game, even if, when I approach the net on a short ball hit by her, it is also completely within the rules of comportment to hit that ball right at her chest, force her to move quickly, to defend herself, to launch the ball I’ve launched at her right back at me. I tell myself: I’ve been through worse. I tell myself, stop thinking. Nose breath in; whisper breath out. I reset. I bounce the ball. One, two, three. A bird flies overhead. The ball flies into the air.

Exercise 96 Kiteley
One Moment
Iowa Summer Writing Festival

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.

Fly

Let’s fill a flask you and I
and take to the back roads I drove
when I was sixteen and always late,
when the ditches were improbable,
when the ditches were a siren call,
clouds of dust rolled from my wheels,
neighbors watched from farmhouse windows
my reckless speed, my sober restraint
told my father I should
slow down. You’ll put your hand
on my knee, and I’ll have
worn a skirt just in case I press
down hard on the pedal and once
again let myself fly, the sky
rolling up the windshield
like a canvas, like a curtain.
Let’s get this show
on the road.