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.

My Phoenix

(2008 – Noah is three years old.)

Before he was born, each moment
simmered down so simply
to: happy, sad. Now I am neither. Never
one nor the other. A haze
has settled, an eclipse cloaks
the light, and I rummage, blind,
through piles of emotions, sinkholes
of scraps, all notes on a broken heart,
searching for clues, an X on a map, a route, a way out.

The world turned grey for us. No
bright colors any more for us,
our lives whittled down with
Unmet expectations shaved off in wormlike
curls. Lost dreams drop
off behind us like so much
debris in ditches, piles of discard and disuse.

Now my back bends.
My belly scrapes the ground.
I am loaded like a beast
of burden. My weight is weighted with wants
I can no longer put to work
in the hopes of shaping a life
for myself, for him, that is measured
by capacity and not by limits.
And I am tired, tired
of sorting feelings
into orderly bins: hope love disappointment.

Yet, one day, long
after he should, he points
To an apple, red and round
on a white page. Recognition. Cognition.
And there. Oh there it is.
Like a mouse burrowing
beneath fall leaves, like a faint voice
whispering from beneath rubble, hope stirs.
And like a pale green sprout, slow
in its uncoiling, Noah unfolds.
And suddenly I believe again.

Some day he will learn
his letters, his numbers, his name.
And on those new-colt legs, he will
run with friends, run from me,
from my arms that have carried him far too long.
He will run, fly, and I will
be the first mother to cheer, to say, to plead:
Go, my son, grow up too fast.
Like they all said you would. Go.

the summer i turned eighteen

They Broke my legs
both femur Bones
Broken in half.

They removed one
and a half inches of Bone
from my strong right leg
inserted that Bone
(imagine: what could look
like sawed Bone? imagine:
sawing bone.)
between the Break
in her weaker left sister.

They used my Bones
as counting beads
as building blocks
to grapple
with impotent equations
(1.5 + -1.5 = 0)
to prove science
dominates nature.

They evened me out
3 inches.

They slidshoved (imagine!) metal
rods like skewers
down
into the spongy marrow
of my Bones.

They screwed metal
plates nestled next to Bone
and i remember
i woke screaming
when
They drew my Broken legs
bent at the waist
up over my head
(Perhaps I imagined)
a better angle for x-rays.

They said walk
and i did 2 days later
i imagined i would die
wished
They would die
imagined she
the athletic blond therapist coaxing
me onto two Broken legs
with platitudinous encouragement!
to walk
on two Broken legs
would die.

For eighteen years
They described my leg as discrepant
and i believed
that discrepancy
was me.

i watched a movie called
Misery
and she broke his legs
with a sledgehammer!
to keep him still, to keep him
home. It whispered
memory
into my ear
this (imagined?) horror.

how did They
Break the legs
begin the punishment
of the criminals
who hung
on crosses
next to jesus?

They were god.
father, son, holy ghost
my mother
bless her believing heart
turned me over to Them.
They were healers, mayo clinic, blue masks, sweet
air like candied fruits lining my mouth, like sweet
cellophane, a Disneyland sleep, reach sweet sleep
count 100 backwards, imagine peace.
They were teachers and coaches
who said no,
who refused to Break
the world open
for a little girl
for whom no
would always be the answer.

They said i couldn’t
play on the swings
skate like dorothy
tumble like nadia
It was no use to imagine.
They said i couldn’t run
on the bases. Took me off 1st when i earned
my place and replaced me
with someone who could.

i wonder who
They imagined I would become
(who I could have imagined being)
before
They Broke my Bones
the summer I turned eighteen
and I felt my spirit
slip away.

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.

Self Talk

Nobody talks about the fat girls. Well, sure, they talk about the fat girls, but that’s all they have to say, that they are fat girls. Not that the fat girls are also just girls. Girls who are fat and who think about that fat all the time and think that others think about their fat all the time, because everyone talks about the fat girls.

Envy

The news that the baby has been born comes by email. There are exclamations around the office, like neighborhood fireworks whose rhythm of release is never quite mastered. There are gaping silences, then an “Oh!” and a “Baby!” I hold myself quite still and reread the email. A baby has been born to my coworker and his wife. It was a long delivery. A successful delivery. As they say, Mom and baby are doing fine. But I am looking for something else. I am sniffing for a hint. A hint that maybe not all is fine, and maybe I am not alone in having my idyllic dreams snuffed and reduced to smoke. I feel terrible, certainly. Write to a friend, the only one who understands: “Envy. It’s evil.” People use the phrase “murderous rage” as if it is the worst emotional pool a person can drop into, a force that will make a person do unspeakable and unforgiveable things. My envy may not cause me to kill, or maim, but I understand how it can because I feel poisoned by it. There was a murder here a year or two ago that was as horrifying and bizarre as any you’d read in the 14th book by a mystery thriller writer who has upped the ante with each book until she has ultimately run out of even semi-reasonable plots. A woman, desperate to have her own baby, murders a pregnant woman and removes the baby from her belly, hoping I suppose to keep it for her own, but kills the baby while performing the gruesome surgery in her basement. I would never. I know this. But I understand the pickling that spoils the heart, kills off empathy and human kindness like alcohol destroys bacteria. I want no one to ever be happy with healthy babies and fulfilled dreams. I must actively work to flush these feelings, drain them with a flood of self-talk to drive them like cattle back into the perimeter fence. The envy lives in me like a child. It grasps for someone to come and join it in its misery. Oh yes, misery loves company. How can I feel so alone among the rubble of my dreams? Won’t somebody come and play, somebody come and play today, I hear in my head the Sesame Street song that my now 8 year old son still listens to. He should be watching Star Wars or Disney films that I was all prepared to hate in all their lack of sophistication and misogyny. But I would kill to watch Aladdin for the umpteenth time, if only Noah’s mind could develop enough for him to fall in love with something new. There is so little new in a life set on repeat. Some parents write about how glorious it is when their kids with whatever kind of delay spit out a new word, or show a new interest. And it’s true. So true! There was a spark of joy when I asked Noah last night when he was playing in the bath with small animal figures who jump and splash into the water (a game he has played for 6 years made all the more fun when you accuse the figurines of being “bad” and not allowed to go the mall, which is Noah’s greatest fear) who the Bad Penguin was? He held him up over the lip of the bathtub and said, “Him!” It’s cute the way he said it. The way he says a lot of things, like “Day Du” for “Thank you.” And I celebrate it. Tell the story to Mark when he comes home. And we laugh as though we are happy and really feeling joy. But there is no true joy to be had in hearing your 8 year old son say a word that most kids master both verbally and grammatically many years prior. There is no true excitement that this work, this “him” might lead soon or someday to a sentence, or a story, or even, a glimpse into his inner life, if he has one. Does he? Does a child who has watched the same Elmo’s World episode 50 times have an inner life? Or is it like driving on autopilot? Sometimes I think being Noah must be like being a bit drunk all day, every day. His ataxia and nystagmus have him listing from side to side, and he trips and falls more times during a day than most of us in a year. But he shakes it off like a drunk might when pushing through the door of the bar the wrong way, or stumbling off a curb, or hitting a shin against the corner of the coffee table. He fumbles for words, spews emotions like a sad drunk who moves from giddiness to sadness between sips. He moves through is world with the same haze that I do when I’ve had too much to drink, but drive home confident that I know the way, that I will stick to the deepest worn grove, like I do when I get home and careen through the house to get water, Advil, let the dog out, stuff something salty in my mouth, brush my teeth, dress, not thinking keenly about anything. Everything is just a movement that leads to another movement that leads to another movement. And I hope I haven’t truly hurt myself in the process, and I’m certain that I will feel like shit the next day. How does Noah do that? How does he spend each day in some kind of quasi-coma that just leads to yet another day in that same fog and stumble and keep your head down kind of living. I know it is assumption. That I have no idea what his life is like. That none of us as parents know who our child will be. And for most parents that’s what’s so damn exciting. That’s the novelty. And that’s where our hope lies: it lies in potential. And my friend, the one with the new baby. He looks at her and sees the embodiment of all she can be. While I look at Noah and see what he will never be. How can I not be envious? Not of my friend’s good luck. But of his new daughter’s life? How can I not be envious of that life for Noah?