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.

On the Surface

Mark is hosting Dungeons and Dragons tonight. Since taking disability after cancer treatment, D&D is Mark’s most effective treatment against the depression that can sneak up on him if he doesn’t arm himself with a purpose. Noah likes to sit with the gamers (Noah signs “friends” by alternating his index fingers, laying one over the other) at the card tables set up on the back porch. When the players laugh, Noah laughs, though he doesn’t understand what they are saying, why what they are saying is funny. Occasionally he takes a turn rolling the dice, but usually he watches his iPad, one ear on the conversation, waiting for words he recognizes, waiting for laughter.

Tonight Noah has been given a stack of blank copier paper and a blue highlighter. He bends close over his work like a jeweler inspecting a tray of diamonds. His nose almost touches the paper, he is both so intent but also so almost-blind. We still don’t understand his vision issues. He is significantly near-sighted, but being close to a screen or book also helps focus his eyes, still the nystagmus that makes his eyes flicker and dodge. A variety of examinations by a variety of experts have yielded no concrete answers, no applicable strategies. Some tell us to try glasses; some say glasses won’t really help and will only confuse his adapting perceptions. Noah can’t tell us much. He just adapts.

I have walked past the door to the porch several times to check if he’s being disruptive to the game, but he is sitting quietly next to Mark, diligently drawing. I post a picture on Facebook of him in such studious pose, label it: Dungeon Master’s Apprentice. The picture gets many likes. But that captured moment is like so many: on the face of it, Noah is accomplishing something that looks so like what other children are doing. I post a picture of him riding a horse like he is taking a lesson, but it is hippotherapy. I post a picture of us at the pool, but after years of lessons he still cannot swim and we stay in the shallower end. I post a video of Noah ‘running’ the 50 yard dash at a track and field event for his school district’s special needs children. He crosses the finish line though he comes in last, and I am proud because he mostly stayed in his lane, didn’t fall, and ran the whole length without an adult to guide him. But that is not competition; that is participation. And for us, it is enough, but it isn’t what it appears to be.

When I share pictures like these, usually adorned with a clever quip or positive message, I am sharing my son, and my love for my son, and our adventures as a family, with my friends and our family and many acquaintances. This is as it should be. But each time I share these pictures I am also lying. The lie is the one I tell myself in trying to convince myself that my heart doesn’t ache with sadness over the limitations of Noah’s accomplishments documented as celebrations.

I know I am not alone in telling this lie. Social media is full of them. Lies of omission told by the abused, the abusers, the lost, the lonely, the insecure, the in-debt, and the unexceptional. What we present is not what we are. What we present is only what we wish for.

At 9pm I decide it’s time to retrieve Noah from the porch despite his diligent tasking. His face and hands are littered in blue highlighter graffiti. He grabs for his stack of papers, maybe 7 or 8 sheets, says, “Wook!”, proud of his art. I oooh and ahh, and I try so very hard to ignore–no, transcend–the fact that every sheet is covered with roughly-drawn circles, the only shape in 13 years he has learned to draw. Pages and pages of almost-circles.

There should be a word for this feeling of almost. Bittersweet feels too tender, a word for reverie. I want a word that is pride and sorrow intertwined. I want a word, a fresh addition to the limits of language, so I can claim this state. At the same time, I berate myself, think a better person–a better mother–would have by now shed her sorrow, managed her disappointment, and internalized the optimistic messaging she posts along with her Facebook photos. I adore my child, and I am so proud of his half-words, and small gains, and his pages of almost-circles, but I too remain almost-complete, my mother-heart more break than burst.

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.