Year Thirteen

3/4/18 | Today you turned thirteen years old.

For the second year in a row, you have strep throat on your birthday, so it is fortunate I didn’t plan that big party I have imagined but never held. You lack the ability to tell time, to know what a minute, an hour, a day, a year is, and so I am able to squirm off the hook. A few days ago, while you played in the bathtub with your cars and toy bears, I whispered to your dad about how I’m disappointed in myself, how I let my own ambivalence about your birthday prevent me from providing you with a birthday event you would delight in–trampolines, bowling, maybe visiting dogs at the Humane Society–, because you never realize what you are missing. Some days I think I should not be forgiven for the ways I skirt around motherhood like it is a fire I cannot get too close to for fear of getting burned. I am sorry that I cannot fake it better, even for you.

I thought yesterday that maybe we should just stop celebrating your birthday altogether. What a relief that would be. I wandered around the toy store looking for gifts to buy you, and keenly felt the pointlessness of my effort. Aisle after aisle, there is nothing left for me to buy. We own all of the toys for babies or toddlers that might interest you, and everything else is, well, not for babies or toddlers, especially one who is 90lbs and nearly as tall as my shoulder. I bought some foam blocks to add to our collection because Legos frustrate you and anyway you cannot imagine the castles or spaceships you might build, that might spirit you away. I bought a dog-shaped sprinkler for when the weather gets hot again, because you still love water as intensely as when you were a baby. There is also a Thomas & Friends train track. We will wrap your presents and you will thrill at the unknown even if you barely pay each gift itself a second thought after opening.

On my drive home from the store, a fragment of what I thought was a poem flitted through my mind: “…I put away childish things….” I thought perhaps it was Kipling, but a quick online search and I was reminded the line comes from First Corinthians, the Bible’s chapter on love.

11 | When I was a child, I spoke as a child, I understood as a child. I thought as a child; but when I became a man, I put away childish things. 12 | For now we see in a mirror, darkly, but then face to face. Now I know in part, but then I shall know just as I also am known.

You won’t have that opportunity, I suppose, to transition into a man. You’ve just barely become a child. At six feet you may be six, if we are lucky. I don’t know what constitutes a teenager, an adult: is it merely years on the earth? Must we also have our years and our body and our mind in sync as well? Who would have thought, thirteen years ago that this would be our reality. I feared, but I couldn’t have known. I’ve stopped trying to predict our misery; and yet, holidays release a predictable, yet still relentless, wave of depression that subsumes me before I can anticipate its arrival. Even as I know that birthdays don’t change anything. Yesterday and tomorrow, we are the same.

When you turned one year old, I wrote to you in a journal I once thought you might read: “I am so ambivalent. You are not what I expected and yet you are everything. In many ways, you are as puzzling to me as you were the day you were born and yet I know you as well I know my own body.” In thirteen years, those words are as true and as bittersweet as when I wrote them. It seems that as you grow, the mirror will remain dark, and I will still only ever have a partial understanding, a glimpse, of who I am and who you are to be.

In the coming years, whether we count their passing as worthy of celebration or no, our little family will stumble along with our good intentions in the lead, hoping to get this one life right at least part of the time. Enough will have to be enough. I can forgive myself for not yet telling you it is your birthday this morning, for not throwing you a party, for not knowing how to raise you all of the days in between the years. The rules became inapplicable to us so long ago. And I can accept, because I have to, because I’ve learned I have to, that I cannot guarantee you a safe place in this world. Age will not bring you independence, but I will joyfully keep you by my side as long as I am alive to hold your hand in mine.

Perhaps every year, I should be celebrating my birth day on yours. Your birth, your life, has sculpted me in ways I innocently, naively, could never have imagined. I dreamed of castles, an idyll, but was rewarded with something more elementary. I was reinvented at your birth. And now, after thirteen years of growth, I can say with certainty I need never have worried as I did then that I wouldn’t love you. Or as the seizures came, as the disappointments came, that I couldn’t love you. If there is one star that shines brightly, inextinguishable, in the dark and fathomless sky of our future, it is love.

Charades

Sometimes it shocks me how much other children talk. I’m just not used to how much little kids can say with their high little voices, bulleting out words, often so stream of conscious and unrelenting as to wear me out just to overhear. Today, I am struck by this in a public restroom. When I picked a stall next to one housing mother and child, and the child is talking all through the whole procedure of peeing, it astounded me. My 11-year-old son doesn’t yet pee in toilets, dependent still on training pants. (I worry he needs more disciplined parents to get him over that hurdle, but oh lord how we have tried.) But he also doesn’t yet speak. At least not in a way you would call speech.

Certainly he doesn’t talk like this little girl in the stall next to mine. She talks about the pee on her leg, and the amount of toilet paper she would like to use, and how cold the snow is when she doesn’t have her mittens on, and how she would like pink mittens please. Her mother reminds her that her mittens are pink, and she replies, “of course” in a way that is clearly mimicked, but also makes her sound world-wise and somehow forgetful.

When Noah notices a color, he says “yellow,” which means “color,” but also might mean “yellow” or maybe “blue.” Yes, he says “tired” and “no tired” and “up” when he is sleepy or not sleepy, but that’s about as revealing as when a dog sits by the door wanting to be let out. This may seem ridiculous, but when we first learned that Noah might never talk, I thought I might be ok. Worse things, right? After all, we’ve owned dogs for years and I’ve had fruitful and loving relationships with each them. Hardly. We only want from dogs what they are able to give. We want more than companionship from a child. With a child, we want to see ourselves. We want proof that everything we put into him has developed his inner self. Then we want to know that person. It’s a gift to know your child, for your child to give you more than you gave. This life? This life, well, it’s more like living in an echo.

Noah calls himself “No-nah” or “No-no” depending on the day, but he cannot say his own name. Can you imagine? Eleven years, and you cannot say your own name. Nor has he been able to learn to say 3 words in a phrase that might shape a concept for us to grasp onto. If he has an imagination, I don’t know what he daydreams about. I don’t know if his stuffed animals have names other than “bear” or if he could parrot a conversation between two adults in that way of not understanding context that kids have. “Kids say the darndest things” and “out of the mouths of babes?” Oh well. Why long for something that can never be had?

Still. What would it be like to have a child who talked? A child who talked about nothing and everything? Whose brain, whose daily life, I could have some access to? That’s the hardest thing: to not ever know anything about this child beyond what I can witness. Sure, parents are all bystanders to our children’s lives, but what if he could give me access to his thoughts, his dreams? When he wakes up crying in the night, I do my best. I guess it was a nightmare. Or maybe he feels sick? But I can’t know. When he falls, I try to detect where he was hurt through trial and error–“Is it your foot? Your toe? Your leg?” while he points to his mouth which he obviously didn’t fall on–, but it would be that much easier if he told me what hurts. No, not easier, it would be…more like mothering to know what my child feels when he feels pain. Then I might know how to fix it.

People tell me I know my son better than anyone else. And while I suppose that’s true, it’s also the farthest thing from the truth. And very little comfort. I don’t know him, because much of what I know is what I tell myself, not what he tells me. Sure he can ask, “Why?” or say what sounds like “What job?” but might be “What’s that?” But it’s not like he can tell us a story about something that happened at school that day, and ask, “Why did that kid do that?” or “Why do they always serve Fruit Loops for breakfast?” or, “Why can’t Ms. H be my teacher forever?” The list goes on and on.

Can I understand what little he can say? Yes, a lot of the time. Certainly more than other people in his world, even those who love him best. I can reinterpret his utterances, his hand motions, his defiance. I can translate his few words into concepts others can grasp. When we are walking through the grocery store, and he points to a stock cart, and says “truck” in that way he does, and looks at the stockboy with a smile, I can explain, “He loves carts.” But when I think too much about it, about his inability to communicate with people other than me, the limits of how much he can explain, declare, ask, prevent, well, I go a little crazy. Someday he will be 50 years old and I will not be alive to translate for him. And who will protect him then?

It’s lonely for me to be with him, and I wonder if life is lonely for him too. I wonder if he has all these pent up words that he really wants to say, that would spill from his lips if his brain could speak to his mouth in a way that produces words. When I ask him how his day was, and he gives me the ‘thumbs down,’ I can’t know if he is thinking over his day at school and truly assessing it, or if he is only thinking about the last thing that has happened, or if he is being silly and saying that the day was bad when in actuality he doesn’t have the deductive or summary skills to know. So I guess in one way it is good that his brain is pretty limited in its cognitive ability too. Maybe he doesn’t wish to say more because his brain doesn’t really produce more that he desires to say.

But somehow I doubt that. Maybe he doesn’t have much to say, but I’m pretty sure that if his mouth and lips could form “I don’t want to go!” or “Can I have ice cream?” he would like that too. Even if he can never tell a story, I suspect he would like to tell a joke. And I suspect he would like to ask your name, say “Good morning,” ask for pink mittens. We introduce him to other methods of communication– ipad apps, sign language, push button ‘talkers’–, but he’s so singularly interested in speech, despite the struggles, that it is his default. He tries, we try, and all we can expect is to get somewhere close. There is no target beyond almost.

I’ve likened life with Noah to an unending game of Charades. That seems uncharitable, and of course minimizes the gravity. But maybe because I need it to. He produces sounds, and then it’s our turn to do the work. We offer him options and wait until we hit on one that makes him nod his head yes. And just like the game, we cheer when we guess correctly; we may even smack the sides of our head with an open hand, and say, “Oh duh,” because it has taken us so long to figure out he wants peanut butter, not butter, on his toast. And then Noah too echoes, “Oh duh,” and laughs at our stupidity, like he’s never expected us to understand him, like he’s any other child who thinks his parents are barely tolerably intelligent. And then, very likely, he will not eat the peanut butter toast, because that totally was not what he meant. But how were we to know? It’s a game we can simply never win.

Cosmogony

To see him lying there, bloated and nearly naked due to feverishness, tubes like exterior veins protruding out of his neck in a knot of grotesque jewelry, a patch of dark blood–had it gushed?–spread out and dried on his chest, a thrum thrust through my torso like when a plane breaks the sound barrier. He turned to me when I arrived, when I said, “Wow,” careful to keep a certain amount of lightness in my voice, like when you slip on the ice and fall hard but assure everyone concerned that you’re just fine, and he said, “I’m sorry, honey.”

I think at that point he probably knew it was bad since the machine those tubes attached him to was removing his blood, cleaning it, and returning it, in an effort to quickly reduce the number of white blood cells which had been replicating unchecked in his blood. A science teacher, a teacher of biology and chemistry, certainly he knew. But he is also a pragmatist with a healthy shot of optimism. In other words, he’ll face what he has to face, but he won’t think the worst until it’s absolutely proven to be happening. Then it’s a matter of science; luck hasn’t much to do with it.

The women from the blood center who worked the machine, who showed me the bags of his blood, both red and white, mentioned chemo to one another. I didn’t let on that I’d heard, but soon I went out into the hallway to find the hematologist and suggested they make an effort to talk to him about the chemo since he had not been told directly that he had anything that necessitated such treatment. I said all this without so much as a crack in my voice. She was unwilling to commit, to declare it was cancer, to say more than that they suspected a form of leukemia, because the lab results weren’t in yet. But she promised to have the resident stop by and explain what they’d learned as soon as she could track him down.

I went to his bedside, and asked if they’d told him they were going to start chemo, that it was likely leukemia. He said no. He stared up at the ceiling. Tears pooled in his eyes. And then they were gone. I told his parents when they arrived–they drove from Minnesota on a feeling that things were not all they appeared to be, parents who had already lost a son to cancer–, that it was likely leukemia. His mother shook her head, said it might not be, that the tests might reveal a less devastating diagnosis, but I was sure, just as I’d known there was something wrong with our son’s development before anyone else believed it could be true.

The resident explained to us what Acute Myeloid Leukemia was. He used simple pictures on a white board to illustrate what had happened in Mark’s body before we could know it was happening. My memory of these moments is solid–I see the room, his rough sketches, and hear the resident’s voice, a reassuring Indian sing-song, clearly–but I’ve turned the information around in my head so many times, trying to apply some sort of logic to the incredible, that I’m afraid each time I speak that I’m repeating some laughable interpretation of the facts like a game of telephone.

As I understand it, a chromosome went wrong and one rogue cell started birthing premature white blood cells which then replicated more premature white blood cells, ad infinitum, driving the platelets and red blood cells out of the neighborhood that was his bone marrow. And because immature cells can’t do the work that mature blood cells can, his immune system was an inadequate barrier against any kind of illness. The cause is a gene mutation, a mutinous enzyme, a scratch on the record, that caused his cellular production to go awry. If left untreated, the immature white blood cells would proliferate until he is dead. Because this new chromosomal error is uneditable, they must clean out his bone marrow and replace it with another person’s.

Some leukemia survivors regard their bone marrow transplant to be a rebirth. They take pictures of themselves celebrating their new birthday. Some report changes in their bodies–gluten intolerance, overly-sensitive skin, a lingering fatigue. Some make vague references to not feeling quite themselves. But I can’t help but fear, in a kind of wondrous disbelief that the best science fiction engenders, that the man I married, whom I have lived with for the past 20 years, will not, at the end of this odyssey, be the same. Is this the ultimate test of nature versus nurture? Creationism versus evolution?

Our son’s neurological disorder is undiagnosed. The closest we get is to say he has a seizure disorder, but there is no answer to the question: why him? There is no cause determined, no prognosis predicted. The geneticists and the neurologists and the epileptologists and the other specialists have looked at his test results, the scans of his brain, the vials of blood and spinal fluid, the space between his eyes, the shape of his fingernails, and found nothing to explain why he is as delayed as he is. Is he–are we?—just unlucky? Perhaps the world would be a friendlier place for him and for me if we had an explanation for the idiopathic symptoms that plague his development and his safety. Maybe we could put the questions to rest–Is it something I did?–but then what good has that done us in Mark’s case? Leukemia is something that makes sense to doctors; it is an affliction that has a rote protocol. But it doesn’t mean we don’t ask the same questions: why him? why us? what happened?

Life strikes. Bang. Mark’s cancer was like a car crash without the car. One day he was home, then the next he was beginning a month in the hospital, the start of a six month process toward getting cured, and maybe a two year process to become himself again. And yet, I took it in stride. Maybe it was shock. Maybe it was the Zoloft I’d been taking for a few years since my anxiety over my son’s health and special needs had turned into constant high wire walking. Maybe it was our son’s recent 3-week hospitalization over the previous Christmas and New Years that had prepared me for another long haul, another effort in compartmentalization, the practice of segmenting my strife from my life.

Because that’s what you do when you abruptly–is there any other way?–learn that your husband has cancer and treatment begins even before either of you has time to prepare. There was no choosing, no strategy, no warning that I would suddenly become a single parent of our special needs child, the primary money-earner, as well as the grateful, if begrudging, hostess to the constant stream of family members and friends and child caregivers and dog walkers and house cleaners who offered their assistance. Every one of the 25 days he was in the hospital, I kept it together. The gun had gone off, the race had begun, the ground moved beneath us, and we had no choice but to run, a marathon and a sprint both. Exertion and fear of stopping forward movement drove every decision, every action.

Most people picture The Big Bang as just that, a big bang. Like a spark and a flame that suddenly brought the universe into being. Energy makes sense. Flipping the lightswitch makes sense. But if the universe truly began not from a bang, but from intense pressure that literally pressed the world into being, then how? I suppose it’s why we look to God; the answers are so minor compared to the wonders of the world, the wonders of blood, the white and the red. One day, long before we knew Mark had cancer, something happened and suddenly? He had cancer.

And maybe there are times in a person’s life that are so combustible that you are fused into another version of yourself. My husband may earn a new life by accepting life from another person, but perhaps he already is becoming someone else. Perhaps it doesn’t take blood to renew the spirit. And perhaps it doesn’t take God either. Perhaps the extreme pressure he is under will change him regardless of the transplant, of the noncancerous cells recreating in his body minutes, days, weeks, and months after. And perhaps the same is true for myself. I wonder, after so much pressure, how much of my previous self is still there? How much of me is memory? And, maybe I wonder, how many times can a person be recreated before the pressure becomes smothering and the light just dies out.

I am a Woman

If I were a man, maybe I’d be the kind of man who hits women, who snaps and shakes a baby, who drags his child by the arm across a parking lot. If I were a man, maybe I would have left my son by now. Dead-beat dad. No ties to bind. No evidence to cover up. No silvery stretched skin bearing the proof. Maybe I’d be the kind of man who leaves because staying means feeling, and feeling means staying.

My emotions come on too fast and strong. They gather in my chest like an itch. I feel a pillow over my face. A cover over my coffin. I feel the tingle of adrenaline in my hands and fingertips. I feel a punch in my fists. I want to lash out, just to slow everything down, quiet it all, perhaps shock myself into silence. I feel an urge in my thighs to stretch, expand, put miles between me and what I might have done if I’d stayed.

My love for Noah is combustible. Powder and strike. The intensity of my love threatens to stoke my gasoline-soaked heart into wild flames, and I want to beat it to the punch, fight and flight. But it’s no good. I am a woman. And I am his mother. Presence or absence could land the final blow, scrape against flint, phosphorus and sulfur smoke. I have no choice but to wrap my arms tightly around him, prevent the distance that allows for a leak of oxygen to snake in and fan my fears, and, against my better judgment, I stay.

Moments of Impact

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.

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.

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?