Tag: disability

The Silence of the Sound

~ sehaldorson ~ Leave a comment

It is dinnertime and Mark, Noah, and I have just arrived home from the grocery store. While Mark empties the grocery bags and I prepare the chicken, Noah is occupying himself by opening and closing the storage drawer beneath the oven. When we hear a thump, we both look down and he is lying prone on his back like a turtle flipped on its shell. This happens occasionally. When he just loses control of himself and falls backward. It’s the hypotonia, we are sure. He still isn’t always good at sitting. But he usually cries or laughs, depending on how hard he bumped his head. This time, he is just lying there, stiff, and his eyes are rolled up half under his lids. It is a seizure again, out of nowhere, here when we were doing normal so well.

Mark picks him up in his arms and moves him into the living room. It seems wrong somehow to leave him on the dirty kitchen linoleum to seize. I make a note of the time (6:39) and grab the Diastat box out of the kitchen cupboard. I hear Mark say, “He is burning up!” This is a good sign. Really. It is another fever-induced fever. Not one that is random. If it was random, that would be a different hell. Would carry different meaning. Like getting a life sentence, if that is what epilepsy is. (We would later learn we would not escape that grim fate.)

This is getting familiar if never comfortable. How could seeing your baby, life itself sparking in his bright eyes and exploring hands and thrilled smile of discovery, suddenly vacant of self. Having watched too many graphic recreations of bodily dysfunction on CSI, I imagine the electric currents in his brain zinging this way and that as the fever rises. His brain aflame with electricity. (It isn’t until many years later that I begin to understand that a seizure isn’t a storm, but the eye of the storm, the calm, the silence of the sound, of the fury.) Where does he go during these seizures? Is it like sleep? Is it like death? Is it like peace?

Noah is on the living room rug, his head tipped to the right side as it does, a sign perhaps of where the storm brews in his brain. His limbs jerk and his throat throbs with work and foam collects on his lips. Mark sings. I kneel down beside Noah and kiss his cheek. Wipe his mouth. Watch to make sure he is still breathing. This time, his lips are not turning blue.

Mark strips him to try to tame the fever. I run and get a cool washcloth. I say, “We should just give him the Diastat. It’s been 4 minutes.” There is no reaction from Noah as we lay the cloth across his bare and steamy stomach. There is no reaction when I sing to him his favorite song, or maybe it is my favorite song, the Cole Porter one I sang to him at the hospital when I couldn’t sleep in the wee hours after his birth. “Sun-tanned, Windblown, Honey-Mooners at last alone, Feeling, Fair Above Par, Oh How Lucky We Are. I Give to You, and You Give to Me, True Love, True Love. And On and On it will always Be, Love Forever True. ‘Cause You and I have a Guardian Angel…” We don’t know what we are doing. We know what we are doing because we are doing what we have to. Mark readies the Diastat plunger and administers it via Noah’s rectum. I keep singing and we wait.

We call it the 5 and 5 drill. It’s how we explain the seizure procedure to anyone who will spend time alone with Noah. If Noah has a seizure–oh, you’ll know, we say. He’ll go limp, but also be rigid. His eyes will flutter and probably roll up–, it’s okay to let him seize–in a safe place, of course–for 5 minutes and see if he comes out of it. (I know, how can that possibly be possible? Why is it ever okay to let a seizure run its course?) If he is still seizing after 5 minutes, administer the Diastat–the directions are right here in the box. Please read through them when we leave.–and wait. If he is still seizing 5 minutes later, use another dose of Diastat and call 911. There is a concern with oxygen. There is a concern of brain damage.

There is always a concern of brain damage. We must be alert to possible seizures every day, every hour. He will go months without one, and then suddenly, thump. Sometimes there are signs, in retrospect. The day before? A long nap. An anomalous fatigue when trying something new like standing. This morning? A low-grade fever of 99.5. But then he acted well. He climbed under and around the dining room chairs like they are his own obstacle course. He slid and swung at the park. Enjoyed a trip to the grocery store where we bought wine (joking that Noah had driven us to drink!) and baskets of colorful fall mums. Then, thump. Is the medication not working? Why? Why has this happened today?

As the years collect we will learn there are rarely signs, only our desire for signs, like the common physical salve: Everything happens for a reason. The reason, of course, being applied after the fact to pretend we have some control over chaos. We have no control over the chaos Noah’s disrupted brain has flung into our lives.

Noah stirs. Mewls. Curls up on his side. Eyes closed. His body trembles. His limbs twitch. We think he is back with us. The medicine has broken the seizure’s concentration, but now he is burning up. But now he is burning up, and now he is shivering. We take him upstairs to the bedroom and lay him on the bed, cover his thin (oh, how concave his stomach looks, how weak his limbs) body with a light blanket. Mark is hesitant, but I remind him how terrible it is to have a fever and be cold at the same time. He radiates heat. I get the thermometer. 102. We administer rectal Ibuprofen. Hold his hand. Watch to make sure he isn’t back in to the seizure again (that has only happened once before). He occasionally yawns and squeezes through small cries. You can feel the heat radiating off his body over an inch away. I scan his forehead. 103. I log onto the internet to double-check when to sound an alarm. It is 103. I rush to get the cell phone to be ready to call our clinic’s triage nurse. We lay cool cloths on his skin. Nothing works.

Mark takes him into the shower, puts him in the blow-up duck tub that Noah used as a baby, but it is too soon. Noah is miserable. Cold. In the past, the water has revived him. This time, he is too sick. We dry him off, apologize, lay him back on the bed and take his temp again. 102.5. We decide to hold off calling the nurse; the ibuprofen is working? Next temp, 101.5. Noah rolls onto his tummy, crosses his feet, tucks his arms and knees under him, and sticks his butt up in the air. His favorite sleeping position; our little turtle is right side down now. His breathing accelerates a little, worries us, but then evens out. The tension is out of the room. We lay on either side of Noah, gazing at him, kissing him. In awe of him, like we were in those first days of his birth, but now for reasons less joyful. If we were once amazed by the miracle of him, we are now cowed by the mystery of him.

I cry a little, then. I’ve learned that tears don’t changed anything, but this time I cry for Noah. I cry because it is so sad that life is already not fair to him. All children, I think, should be born with a clean slate. With health. And unlimited potential. But that isn’t the case. Noah’s potential has been limited. By seizures. By low muscle tone. By crossing eyes. By allergies. The limits seem endless. He cannot have ice cream because he is allergic to milk. He is not walking long after other children his age. It isn’t fair to him. He who should have all the opportunity to be happy. And I hope he will be. I hope he will be happy, and we will help him find that happiness no matter what that means.

But I imagine him having a seizure at the playground. On the stairs. I imagine my slight, thin baby as a slight, thin boy, mocked because he can’t play kick ball. I imagine him struggling to talk, or read, or hold a pencil. I imagine him pushed down by a crowd in a hallway. I imagine him middle-aged and alone, sitting at a bus stop, no home, no hope. But, I am learning: these are just imaginings. Strangely, the unexpected otherness of Noah, the expectations of parenting unmet, the dreams of his potential ashed, has also taught me that the paralyzing fears are just as slippery and ephemeral as the hopes. Nothing is real except now.

What is Noah’s potential? When he seizes, all I wish for is having him alive, with me. Each seizure, he is absent, like death is due and will decide whether to stop. Noah’s seizures are whole system and when he becomes still and stiff we drop into a kind of purgatory, powerless to decide if we might ascend. Noah becomes absent of everything but his body, and it would be, it seems, just as easy for him to settle more peacefully into death rather than struggle back to the surface choking life into his lungs like the half-drowned. But more than alive, I want Noah to come back to us as the same Noah who left for those long minutes. No other more damaged version would suffice. I will not pretend I haven’t thought about how much easier my life would be if he were just to fade away.

The ambiguity of my feelings for my child hovers over me like a curse. I am incredibly grateful for the astonishing miracle that is this little beautiful and resilient child. I do not doubt the ferocity of my love for him. But I also fantasize about finding myself in a dark alley, like on the set of some cheap sci-if movie, and coming upon a time machine. I have little doubt I would enter, choose to return back to my motherhood-less life. Selfishly, because I long to do that part of my life over: why didn’t I travel? Why didn’t I go back to school? Why didn’t I write that novel? I wonder if becoming a mother was just a shortcut to purpose in life that had seemed purposeless. But also self-protectively. What of the black fog that shrouds me since we first learned about Noah’s disabilities? People tell me it is normal to mourn the child you dreamed of having, but what about mourning the mother I dreamed of being? When I chose to have a child, I did not know I had also chosen to become harbor to a lifetime of heartbreak.

After an hour nap (I watch over him as Mark makes us dinner—we have learned life must go on), he stirs. Noah is listless, groggy, and can’t seem to close his mouth. I offer him my breast and he is able to take in milk. Mark brings up a bottle of water and Noah drinks more. He makes his talky sounds. We call our dog, Gracie, into the room, a sure excitement getter, and Noah forcefully tries to say “dgogd”. After a minute, he claps, then he gives a smile. All of his best tricks.

We dress him, carry him downstairs, feed him mandarin oranges. He eats and eats. The color is back in his face and he is beautiful. Sure, he is weak and listless the rest of the night, and goes back to sleep by nine, but we think he is okay. Believe that he is okay. We have all survived one more seizure. And suddenly it feels like nothing. Like a close call on the freeway, a car coming fast, a squeal of brakes, then silence. No impact other than the smack of adrenaline, the tingle in your fingers, the beating of your beating heart.

Moments of Impact

~ sehaldorson ~ 2 Comments

After Hiroshima dead bodies were found of people who had been wearing printed kimonos when they were killed. The bomb had melted the cloth on their bodies, but the design on the kimonos remained imprinted in the flesh. It seems to me in later years the deep nerveless passivity of that time together had become the design burned into my skin while the cloth of my own experience melted away.

Vivian Gornick, Fierce Attachments

Some say they remember where they were, what they were doing, when Kennedy was shot. Of course that means they remember where they were and what they were doing when they first heard Kennedy was shot. Some say the same about Lennon. I seem to recall being at Clayton and Maxine’s house, friends of my parents, staying over because my parents were out of town, when Elvis died. I can’t be sure it was Elvis, but I’m pretty sure it was. And I don’t think I remember that moment because I was any particular kind of Elvis fan, but instead because I didn’t understand why this was a big deal. To me, Elvis was only the Elvis of the sparkly white jumpsuits and ridiculous dark glasses; I didn’t understand Elvis as a cultural phenomenon. I didn’t understand that Elvis had changed everything for an entire generation. But my parents’ friends were struck, and I thought I should be too. It was the dissonance of the experience that makes me remember that moment.

I remember being in the band room of my high school when I first heard about the Challenger blowing up in the sky. Perhaps I only remember it because Sally Ride was another Sally, but I think that I remember it because I felt staggered by the realization that the brave were sometimes the least safe.

When OJ took his white SUV on the run, we crowded around a small television set usually reserved for important sports events at the insurance brokerage firm where I temped. At work, where I made copies of documents and then filed those copies, OJ was water-cooler fodder and a spectacle that brought us together for days, weeks, months, with the denouement so deflating it seemed to diminish just how new and bizarre it was to watch news happen in real time.

I had just walked into the gym the morning of 9/11. Instead of running on treadmills, or stepping on ellipticals, or hefting and dropping weights, the people in the gym that morning were standing still and staring up in silence at the silent televisions broadcasting a tower’s collapse. Rebroadcasting the moments of impact. At first, I thought it was a movie. I thought soon Will Smith or Bruce Willis would appear.

Why I remember those events from the past is anyone’s guess. Some events are so dramatic, the impact clears the every day clutter from your head and stamps itself like a brand on your memory. Other events just joins the messy brigade of thoughts marching and encamping throughout the day, denying those moments the time to take root in the soil of memory. I can’t tell you what I was doing when I first heard that Katrina hit New Orleans, when the earthquake hit Haiti, or a defective reactor poisoned the people of Chernobyl, Japan or Three Mile Island.

Seemingly solid memories bleed and reshape like oil drops in water. Tip your brain one way and the memory will elongate; close your eyes and you can drop yourself down in the moment, but it’s a bit like Marty McFly or Quantum Leap: so little control once you project yourself there. When I picture myself in the band room, in the brokerage firm office, in the gym, I don’t move and I don’t react. I only see. Maybe because if I move, I will affect history like any good sci-fi movies warns of, or I will cause the memory to shift and it will never regain its former shape, or I will peer too hard and the clearly drawn edges of the memory will become amorphous and I’ll begin to doubt everything I once thought I knew.

My mother often told the story of announcing to my father they had been approved for an adoption and would be receiving a baby, my brother, by posting the news on the red brick silo just behind our garage. When I think on this now, I simply cannot believe it. How my mother would have posted a sign that big that high-up defies any kind of logic. She would have needed a lift truck to do the deed, but in my mind, that memory of her memory persists.

I was in Mr. Buck’s 7th grade English class when someone came to the door to pull from class and tell me my mother had died. I remember it being our pastor at the door. I would imagine he had been brought there by our principal but I can’t remember him there in the moment. I think we sat in the principal’s office because somewhere in the school my father waited for me after the telling, but I’m not sure. My mind’s eye can’t see the room, can’t remember the first hug. I do remember sitting on my father’s lap in the front seat of the pastor’s car–nicer than any of ours, I know–as he drove us home, leaving my brother at the high school as he was unwilling, my brother, to let the news impact his regular day.

I can’t remember how I learned that my father had died. Maybe my brother and I were exchanging phone calls? Maybe someone from the hospital called me? How can I not remember that? But I do remember coming home (from the gym? from a tennis match?) and listening to a message on my answering machine (from my aunt? or my uncle? a message from either would have been strange as I hadn’t spoken to either of them in at least a decade) telling me my father had been taken to the hospital via ambulance. I know he lived, in a coma, a few more days. I know I didn’t travel to Minnesota to see him. I don’t remember why not going seemed the best option.

Other news also came on like a slow burn of a ditch fire, carefully watched, but somehow still wild. My son’s disabilities revealed themselves like drips into a bucket that fills surprisingly fast and overflows with a gush. By his first birthday we knew that he was not the child we’d dreamed of having. For the next three years I would fight against that reality, trying futilely to cup the water in my hands and put it back into the full bucket.

My husband’s leukemia took months to diagnose. There was always something else it could be. It was exhaustion; it was cluster headaches; it was a virus. The other possibilities were ludicrous as few suspect cancer in an otherwise healthy, downright robust 48 year old man, despite most of us worrying ourselves over cancer every day. Leukemia. Blood cancer. White blood cells gone rogue.

And maybe because it was just months ago, but I remember the moments with calm clarity. I remember sitting at home, thinking it could be leukemia. I remember telling myself that the most devastating thing is often the least likely. He texted me that they were doing blood dialysis to reduce the number of white blood cells because he had far, far too many. But no, he said, he didn’t know what that meant. It took me a couple of hours to get to the hospital. I knew he was sick, that he had been sick, that he hadn’t been who he usually was for many months. But I didn’t expect to see him stripped and bloated on the table, multiple tubes like computer cables running to a churning machine from a port in his neck, his skin blotched around the injection site with stains of dry brick red blood. Each of the tubes were removing blood from his body, pulling his blood into the machine, separating and hoarding the white while returning the red. I stopped dead at the doorway. He turned to me, knew what I was seeing, and said, “I’m sorry, honey.”

And I think that was the moment we both knew. Even before the technician from the blood center let the word chemotherapy drop from her mouth, before any doctor had warned us of the possibility, or rather, the necessity of treating his cancer immediately, no choice in the matter. The gravity of his words, “I’m sorry,” crushing the hope that anything from this point on would be easy. No, what had already been hard would now become harder. The load would be heavier and the direction of our life together less clear.

The word cancer makes people think of death. So does leukemia, though there are many stories we hear about people who have been cured with much hard work, by the doctors, by the sick. My husband has always been a strong man, a hard worker who has defined himself to himself by putting hand to the proverbial plow. He is two months into what will be the two years of the hardest work he will ever have to do. I choose to believe his body can withstand the impact of the blows. I choose to believe that his will can insure the result. I can only hope my heart’s scars have formed a strong enough infrastructure beneath the minute fractures to keep me from crumbling from each upcoming strike.

There’s No Tail on This Donkey

~ sehaldorson ~ Leave a comment

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.