The Bonsai Club of Milwaukee

We happened upon an exhibition for the Bonsai Club of Milwaukee. It wasn’t intentional, this viewing of shrubs and trees in miniature, just convenient since we had a sitter and we had time. My husband, with thoughts of root systems and leaf shapes, observed, as always, from a distance called science. I paced the maze of planters and pots looking only for what pleased my eye. The bonsai had been judged, and like any State Fair exhibition hall, most of the ribbons remained tacked to the week-old display, all shabby pride with no particulars to aid in understanding the judge’s criteria.

Later, we walked the grounds of the botanical gardens that had hosted the bonsai club’s exhibit, talking about the things we don’t usually talk about. I said, how different our lives are from everyone else’s, and yet, I can’t quite figure out why. He said, things are not so different from the way everyone else’s are. That’s what we say to each other, especially about the dark and about mysteries. I say, things, they are hard. He says, no, things, they aren’t as hard as you make them. But the bonsai, I say…

The exhibition was organized in groups: Beginner, Intermediate, Advanced. There was a winner for every category, and various Miss Congeniality-level awards that seemed to laud effort rather than result. It was the beginner entrants that caught my eye. Each show just how people create bonsai–magician’s secret revealed!–with wire. No different, really, than customized cages. Not so different from feet binding. Not that different from rules and policy and politeness, but I knew something else.

The intermediates had already been loosed a bit. Yes, they were still forming, still pushing against restraints, but they already displayed a helium-like lightness to their sparse leaves or needles reaching up for light, for life, that defied the dark and twisted nature of the stunted wood. The advanced were wireless but acquiescent, all quirky beaut, passive acceptance. But those beginner trees, wires twisted up stunted trucks, restrained branches, enforced gravity, little beauty yet to justify the treatment; they defined me where I was just now. I knew what I felt, and the knowing was hard: I looked at my future–all constraint and adaption–and saw little more than a life lived in miniature.

Adagio

Most people claim that time passes too swiftly. Parents in particular. There isn’t a day that goes by that I don’t hear someone exclaim—at a birthday party, at the worrying of a loose tooth, at the advent of kindergarten, in celebration of a baby’s first steps—”They grow up so fast!” No, they don’t. Not always. When parenting a special needs child, one with delays in development, the reverse is true. Time passes slowly. Sure there are still the loose teeth, the outgrown corduroys, the first days of school. The body grows, and time passes, but we are parenting in adagio. There is still music playing but at a pace significantly slower and often less dynamic than the usual exciting, staccato rhythms of life with children. Sometimes, in this special kind of life, time plays out like a dirge. Particularly during the frequent illnesses you have no control over, or during the IEP [individualized education plan] meetings where for several hours a number of well-meaning people tell you, unrelentingly, just how behind your child is, or during the tantrums so inappropriate that it is anything you can do to make the seconds speed by before you can leave Target. Superficial, yet critical: I have been watching the same Elmo’s World episodes for nearly 10 years. I can no longer understand parents who bemoan the passage of time; I crave it. And yet, I also fear it because with each year, my son’s age splits like a widening gulf between the years and his capabilities. My 10 year old is a 3 year old; someday I hope my 25 year old will be my 10 year old.

The hard-won gift of this glacial pace is, however, in those moments when your child, no matter how delayed, shows the mastering of a new skill. Noah did not walk until he was 3 years old. And now, over a year later, I watch him with eyes filled with awe as he runs awkwardly through the grass at our neighborhood park. He did that! It is something he did, that he once hadn’t done! And in those moments, it doesn’t matter in the least that he looks nothing like the other children running around him, that his gait is herky-jerky and he is expressing a level of glee that have most of the kids looking at him like he’s just broken their favorite toy. It doesn’t matter the tears shed or the doctors’ appointments booked or the therapy sessions tolerated. In other words, the time that is past no longer matters. No. Those moments linger like a singular note held after a bold crescendo that is so beautiful, and simple, and clear that it is physically painful the longer it is held, and yet, you can only savor it as long as it lasts. 

There’s No Tail on This Donkey

I mean Negative Capability, that is, when a man is capable of being in uncertainties, mysteries, doubts, without any irritable reaching after fact and reason.
John Keats

The waiting room is designed to look like a living room, save for the reception desk looming on the far wall and some industrial beverage machines to the side. Fireplace (unlit), conversation groupings of chairs and sofas, done in a 90’s floral, and a small Christmas tree undecorated except for a string of white lights. There is a wall rack of dog-eared magazines, surprisingly current, and a TV blaring the Today Show. When we arrived at 6:00 am, not-yet-two year old Noah still bundled in flannel footie pajamas and me with coffee to-go mug in hand, we were the first family here, had a choice of seats around the room. Now, having returned from the pre-op process and turning Noah over to the nurses, we are left to choose two upright chairs too far away from each other to do the requisite whisper-talk happening between all the couples in the room.

Mark has gone to the restroom down the hall and I sit on the edge of my chair, fingering small silver-plated dog tags that bear Noah’s name and birth date engraved on one side. The clasp on the necklace catches my hair and pulls, so I have since removed the charm and carry it with me in my pocket or purse. Someday I will buy a new chain, but for now, they are my worry stones as I wait to hear news about Noah’s surgery.

They had said it would take about 45 minutes, this surgery on his eyes. His doctor was his usual succinct and bedside-manner-less self when he walked into the pre-op room, somehow looking younger in the light blue scrubs than in the white shirt and bow tie he wears in his office at the Children’s Hospital clinic. There is something capable in the way he wears the uniform that makes him seem athletic though he is over 60. He greeted us, said hello to Noah, held a thumb up in front of each of Noah’s eyes, said, “We’ll be adjusting the medial muscle on the inside of his eyes today,” and we nodded, saying “Yes,” and, “Good.” he said, and turned on his heel and left the room.

Pulling my cell phone out of my pocket, I check the time. It has been well over 55 minutes now. Certainly they would come out and tell us if there is something going wrong. It’s not the eye surgery that bothers me. I mean, it’s not like they are cutting his eye, the vision part of his eye. They are just detaching the muscle and moving it a bit, to create more slack for him to adjust and focus. It is the anesthesia that concerns me and has since the day we agreed to this procedure. Yes, our doctor does seven of these surgeries a week. And having anesthesia administered is safer than driving down the highway. These are things we have been told. It is an out-patient surgery. What can go wrong? Well, death, certainly. Because it can. Because death can come when you aren’t looking, or, as we were, staring right at it.

It was the anesthesiologist that pushed me the last inch off the board, sent me spiraling into the steaming, electric fear of losing Noah that I fight against every day. My arms tingle with it, my ears burn, my stomach roils. It’s the feeling that tsunamis over me during every seizure, every day of weakness, every minute of comparing him to another child. It is our reality to see Noah as compromised, somehow less here than other children, as though he has the breath of a ghost in him and I have to look at his sideways to see his whole self.

When the anesthesiologist said those words, “…it could be life-threatening…” there is a part of me that was expecting to hear it, can handle being here in this room in this Surgicenter on Oklahoma and 108th Street, risking our child’s life in order to improve his sight. It is a slight chance only. The slightest. That what causes his hypotonia is something that will interact with the anesthesia and cause a high temperature, be life-threatening. The odds, well, I think he said they were 1 in 25,000, but as I tell Mark, our child is, after all, our 2% baby.

It is a joke between us, one of those jokes that only the long-suffering family of sick people can tell. We thought Noah would be a lucky kid. He was born at 7am, on the dot; he weighed 7lbs 7oz; and if you add up his birth date—March 4th—you get 7. How could a kid with those numbers not be lucky? We now we say he is our 2% baby because pretty much every symptom he has happens in 2% of the child population. His strabismus? 2%. His small head circumference? 2%. His dairy allergy? 2%. His febrile seizures? 2%. So, would it be within the realm of possibility that this child of our could have that myotonia that could interact with the anesthesia and cause his death? Hell, yeah. It seems pretty possible to me.

Once the anesthesiologist left, the nurses came in to take Noah to the surgical ward. I had imagined this moment, when they would take him away, strapped to a gurney. But instead, a nurse simply took him from my arms and cradled him gently. He is sleepy from the sedative they gave him when we arrived and he appears calm and unconcerned. I am anything but. My arms are empty. I have surrendered him to whatever awaits under medication, under a knife, under the small needle or laser point that will re-attach his eye muscle to his eye. The nurses turned to walk away, and I said, “Take good care of him.” Just as they said, “We’ll take good care of him.” And I believe them. Maybe it is something in their nature that assures me that they are good at their job. Or maybe I have to believe them. I have to trust them. And Noah? He has to trust us. To do what we believe is best. And we have to trust ourselves to know what that is.

Mark and I walked hand in hand down the long white hallway back to the floral waiting room. After we passed through the heavy brown doors, the reception desk in sight, I let go of his hand and dodged into the unisex bathroom. I pushed the lock, leaned my forehead against the door, covered my eyes with my hands, and started to sob. For being an inveterate crier, I don’t much anymore. The challenges over the past year and a half—the resultant maturity?—have caused me to hoard my tears. I wait for days like these to earn the right to cry over them. I am ashamed of all the tears I’ve shed in the past over matters that meant nothing. Tears over money spent and money lost. Insults hurled. Stubbed toes. Minor injustices. Friendships and politics. Too tight jeans and holey socks. So many tears. But now I’ve even stopped crying after Noah’s seizures. Seizures have become a time for action, capability. Perhaps I’m afraid of running out.

Mark wanders over to the beverage machine to check out the offerings. He will buy something sweet like hot chocolate if he buys anything. I ponder a cup of coffee but no doubt it would be bitter. From the corner of my eye, I see a flash of blue scrubs and a doctor, not ours, comes into the waiting room. He approaches the couple sitting on the loveseat behind me. I can’t make out what he is saying exactly, because Mark returns with his cup and is rustling the pages of a magazine as he settles in to read.

From what I can gather, the child, a daughter I think, had a procedure done to correct something that did not happen while gestating. I strain my ears and I hear the mother voice familiar concerns. She tells the doctor that she was careful, that she took good care of herself when she was pregnant, that she doesn’t understand how this could have happened, that her last ultrasound looked good and she kept taking her vitamins. I hear myself as she speaks, her language is my own.
The doctor assures her (does he?) that this is something that happened in the early weeks of her baby’s cellular life, that there was nothing she could have done. That whatever happened just happened. He says, “There’s no tail on this donkey.” And it clicks into place. I’d never heard that phrase before and even as I think on it, it morphs in my brain and doesn’t really make sense. I assume he is saying that there is no way to know anything about what caused her daughter’s condition, her lack of something, or extra whatever. I ponder the tail-less donkey wish I had had a doctor tell me this thing, this profound yet ridiculous thing. I’ve no doubt that he has said it before, reassured countless mothers who want so terribly to believe that nothing that they did while carrying their child in their belly caused the child’s condition. And the doctor says as he only can, with a conviction that comes from the certainty of science, there is no sense in wondering, no sense in wearing the hairshirt, no possible end to such self-incurred emotional cutting.

I create story lines to fit my guilt. It has gotten to the point where I can’t even remember my pregnancy without wondering if I’ve altered the facts. All that seems true from this side of the grassless fence is that I didn’t do enough. I wasn’t perfect enough. I should have refused the wine on my birthday; I should have stopped running on the treadmill for as much as I sweat; I should have taken every last one of those prenatal vitamins no matter how nauseous they made me; I should have only used white vinegar to clean my house.

But I didn’t. And few women do. Do all those things. Perfectly. There are plenty of mothers as we know from all the news reports or even our jobs teaching, aiding or analyzing them, that do not take care of themselves and their babies. And they have perfect children. Healthy children. Typical children. Drunks, teenage mothers, malnutritioned mothers, mothers from every decade, decades which we look back at and wonder at the carelessness, have healthy, typical children. But I do not. For every book I read, for every effort I made, for every pound I lost at the gym, for every wish and prayer I made, I do not have a healthy, typical child. What kind of person does that make me?

My shame is reductive, I know that. We organize people and their actions by category, to make sense of chaos. Because variability and chance are too frightening. We want desperately to believe: bad things only happen to careless people. Death from a car crash, and we wait to hear if seat belts were worn, or drinks were drunk. A rape and we wonder why she would be running in the park that late at night, why she wore that outfit, why she attended that party. A child with learning disabilities and we wonder what the mother did even before he was born to mistreat him. Because those are the promises touted by the morning news programs and promoted by our own doctors. Are you pregnant? Then give up eating: lunch meat, soft cheeses, sushi, alcohol. And make sure you take folic acid supplements even before you consider getting pregnant. Do these things and you will have a healthy child. Don’t do these things and imperfection is your fault.

I feel labeled. By myself, by others. I believe like assumptions are made when they see my child’s wandering eyes. Our society promotes the belief that those who plan, work hard, are disciplined, are rewarded. Level of effort equals level of success. And in my vanity, I’m angry with those other women, those women who took risks and the child reaped terrible results, because I don’t want to be lumped into the same category with them. I want to be superior. I want to be other. I want to go to the gym every day and lose every extra pound, and wake up early and put on makeup and clothing that communicates my accomplishments, so no one looks at me, nods, and says, yup, makes sense that she has an atypical, unhealthy child.

Our mythology solves these problems of responsibility and shame for us. “God only gives you challenges He knows you can handle.” Or, “everything happens for a reason.” Whether it’s God or fate, I am absolved. And perhaps my own guilt is vanity that makes me a god in my own mind. My religious upbringing that reverberates through my adult life reminds me of the sacrilege, that I should have no god before God. But if I were God, what would I have done? Would I have changed Noah but not all the other children afflicted by developmental difficulties, or genetic mistakes, or childhood accidents? What makes me any different than the millions of others who suffer? Why should I get my prayers answered? There is no going back, there is no changing the past, because even thinking it, wishing it, is just a circular exercise since there is no tail to this donkey. Trying to find some kind of order to this life is like trying to put the wrong end of magnets together. You can get close, but ultimately it is a futile exercise that tires you quickly.

In time, a nurse steps into the waiting room and calls our name. Our name: The Parents of Noah Anderson. It is what we are called and perhaps it is the only name that matters any more. The doctor meets us and he appears as rested and relaxed as before the procedure. He briefly describes the surgery, saying it went well, and to come and see him in a few days.

The nurse takes over and warns us, as we walk to the recovery room, that Noah may be cranky as he comes out of the anesthesia, and that we will need to stay as long as it takes for him to drink some water or juice and keep it down. Noah is a champ. Is thirsty. Drinks. Perks up speedily. His eyes reddened as though he has been swimming in highly chlorinated water. When we get home, we take pictures to document (or maybe commemorate, as if this surgery could fix everything that goes wrong in Noah’s brain, as if this will be the turning point) the experience. We did what we could. And that’s all we should ask of ourselves.

Lucky Girl

There are nights when I first lie down in bed that I wish it were morning already. That admission hints to a sort of optimism, doesn’t it? It makes me sound like I’m an early to bed, early to rise, tidy kitchen keeping, porch swing tea sipping optimist who can’t wait to take the next day’s tiger by the tail. Instead, it’s my biological warning system that tells me it’s going to be a long night of insomnia, of my feet being too hot and my arms too cold, of my mind already being smack-dab in the middle of tomorrow, of my feelings being too raw, all jacked up on the caffeine of worry. Worry about my son and whether he will sleep through the night, whether the long-dreaded, but no doubt inescapable seizure will strike, as he sleeps next to me. Or I am too conscious of my husband, sleeping or not sleeping in Noah’s bedroom, now my husband’s sick room that is starting to smell stale with lack of movement in the air, of his body. Nights like those, I can feel my heartbeat in my ears. (Zoloft has helped; I don’t have any problem admitting that, even aloud at the brunch table or during a meeting. And it’s doubtful anyone looks at me askance because it’s pretty well-known that if anyone needed some drugs to make it through the day, it’s me.)

Ridiculously enough, I consider myself a lucky girl. And that may be the true test of my inner optimist, but I’m not sure if that’s a result of my brain chemistry or my brain on chemistry. Still, I have few complaints despite my many challenges. If I skim through the pages of medical campaigns on gofundme.com, the community fundraising site, I know in my bones that it could be worse. That’s not just a cliché. There is one woman who has had the majority of all of her limbs removed due to a late-diagnosed case of Rocky Mountain Tick Fever. You can’t tell via the page her relatives created, and obviously I can’t ask her, but I assume she still wants to live, and that’s saying something.

Me, I’m astounded every day that I am someone with a story. Sure, everyone has a story. And I’ve always had a story to tell, about my own adoption, my surgeries, the deaths of my parents. But now I have the kind of story that can be donated to, and that meets the criteria for state assistance. (I mean, we have a freaking case worker! Don’t “other people” have case workers?) Our gofundme campaign earned $7500 in 5 days. The story is this: my husband has recently been diagnosed with leukemia. My son, 10 years old, has a seizure disorder and global developmental delays, and more relevant to anything, needs attention; he is not toilet trained, he would stop eating after 3 bites of breakfast, lunch or dinner, if we didn’t feed him, spooning food into his mouth, or hooking his G-tube up to a bag of non-food food. I joke that if there is something for him to run into, he’ll run into it.

Still he’s kind of a typical kid. Just a young one, for his age, cognitively a toddler, but with a will to do things he cannot do. He loves to swim, but can’t actually stay above water. He wants to climb to the highest point, but he doesn’t really know where his feet are when he places them on the rungs of the jungle gym. He loves the zoo, but his vision impairment prevents him from seeing the animals. He demands a lot of energy and patience. I joke (again with the jokes) that he is 1.5 children, so it’s a challenge to be outmanned by him when you are caring for him alone.

But here’s the deal: I’m not sure what I expected. What does anyone expect from life, when you have no idea who you will be as you age, or what will happen on the way? At some point you learn, if you don’t look too carefully at your sorrows, if you glaze your eyes over just a bit when giving them a stare-down, the edges are dulled and you can run your mind along them, like your finger on the blade of a knife, without feeling the cut.

Being Seen

A Louis Vuitton bag. An iPhone holder in the shape of brass knuckles. Her iPad cover is pink and tan. Stiff beige work boots, the kind that were in style in the 90’s. Her shirt cut off short, the unhemmed edge curling up, a picture of Tupac entreating us to “Trust Nobody” above her flat belly. A black trucker hat pulled low over her curling extensions, white earphone cords dripping down. She has a beautiful smile as she listens in silent appreciation to what streams—maybe YouTube—on her phone. I’m surprised her fingernails are cut short and may or may not have a light pink glaze over them. I expect her to sport intricate designs on the ends of her fingers, maybe leopard print to match the face on her watch.

There is a man in a Packer jersey and long tan pants over Adidas sneakers. It is 90 degrees, humid, and July. He must have gotten dressed in air conditioning. Sunglasses like those worn by Tom Cruise in Risky Business hang from his hand as he waits for his beverage at the coffee bar. There is a self-seriousness to his face that bespeaks business, maybe investments, but also there is a lingering frat-boy insouciance that keeps the other people in the queue from getting too close to him. When he leaves he weaves his way through the people coming in rather than going around them.

My accessories consist of a pair of crutches and a bead of sweat racing from my forehead to my cheek. The woman at the table next to me, a stack of notecards and an egg biscuit in front of her, offers to help me settle in, but only after I’ve settled in to my seat and I can decline her offer graciously. A cute hipster girl brings me my breakfast, and the only woman working at the café who does not wear her youth culture on her sleeve and could rightly be described as a ‘plain Jane’ brings me my latte. I get the hefty black boot that guards my broken foot from further damage settled on the chair across from me. From this vantage point, I can see the entire room.

I marvel at the slim 50-something woman with the tightly curling hair listen intently, with a kind of melting sincerity, to the man in the yellow shirt and khaki pants and lengthy grey-brown hair who sits next to her, his legs crossed at the knee, youthful brown tennis shoe on his dangling foot. A man in dark-framed glasses, grey pants rolled up just below his knees like how my husband used to wear his when we first started dating, catches me looking at him. I turn away rather than smile like I see people do in movies. Why do we feel so guilty looking at one another?

In 1st grade, I wore a full cast on my left leg and walked with crutches for six weeks following knee surgery. In 3rd grade, I wore a similar cast on the same leg after breaking a bone in my lower leg. Soon after, I wore a body cast from the tip of my left toes to around my rib cage, after another surgery on my upper leg and hip, replete with rods and pins to hold the bone together. There were other surgeries as I grew, and I became adept at using those same wooden crutches each time, racing other kids with two functioning legs down the hallways of our school.

But I never got used to the stares, the curiosity I provoked in people as I moved awkwardly through the mall or at a sporting event. I recoiled when that curiosity compelled strangers to ask me what had happened. I found their blatant interest in my misery self-serving and not at all innocent. I preferred not to be noticed. When I arrived at my college campus for the first time, again on crutches and struggling to participate in the freshman orientation activities, I was conflicted with my need to ask for help from these strangers and my desire to go unnoticed. I preferred to be lonely rather than be perceived as needy.

My son, who is none, now draws those same stares. Small children corkscrew themselves to watch as my son walks awkwardly past them, his hand in mine, his staggering gait mimics that of an actor miming drunkenness. Adults sometimes stare too, but are better at hiding it. They glance over at us, once, twice, three times. You can see the wheels turning: isn’t that child too big for a stroller? Isn’t that stroller bigger than most? Is there something about the drop in his chin, his unfocused eyes, the bend in his wrists? And once they realize their suspicions are true, they look away, self-conscious. Sometimes they smile. Sometimes that smile is warm.

In this cafe, there is the constant sound of coffee roasters spinning the beans, like sitting next to a waterfall and its constant rushing. The sound drowns out the specifics of any conversation, but the collection of voices blends into a drone in my ears. There is a surprising sense of privacy to this coffee shop—each table or booth an island from the rest–despite the activity and the nearly full number of chairs. As I maneuver my way through the tables to get a glass of water, my metal crutches click and creak, lead the way, but to my surprise hardly anyone notices. One man slides his chair closer to his table to give me more room. A woman at the condiment counter asks, “Don’t you just love your boot? I love mine. I still have it for any time I turn my ankle.” I want to say no, but I just smile, lips closed. I’ve never been good with hollow agreement. When I leave, backpack with laptop slung over my back, a man vacates his spot in the order line to hold the door for me as I leave, asks if I can manage. I say I can, this time with honest gratitude because the hot sun of a summer day awaits me and I am already tired at ten in the morning.

It has been over twenty years since I was last on crutches. It’s harder now. I’m heavier. I’m older. After five days, the palms of my hands hurt so much I dread needing to move anywhere. I expect to have highly defined deltoids by the end of these six weeks. Now, I find the “What happened?” not only tolerable but kind. My boot a badge of courage that people can plainly see, something that labels me “soldier” rather than “victim.” I have to work harder to do the kinds of ordinary things that the people around me can do without effort or thought. I sense a kind of respect emanating from them. Why could I not sense that same admiration when I was a child? Why did I feel apologetic and ‘other’ rather than proud and singular?

I might never know the answer to that most important question of my childhood: why was I not able to accept my individuality as a person as not only inevitable, but to be lauded? Why did I hide rather than shine? How is it that I remained unaware of my near-celebrity; I, like the biggest movie stars, couldn’t hide from being seen? Now, I suppose being hobbled and on crutches at forty offers me a chance to re-label myself, a new measuring stick with which to mark my growth. Instead of hiding, I free myself by being seen. Perhaps I can teach my son to feel included by the stares of strangers, rather than excluded? The idiosyncrasies of character, worn on the outside for all to see—from brass knuckle phone cases to achingly hip sunglasses to a big ugly supportive boot to an obvious, intractable disability— are what imprints our existence upon the world.