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.