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.

The First and Only

(This essay appeared in the Death Blues Ensemble album here.)

The first and only poetry prize I ever won was for a love poem. Written to my older cousin, Kevin, the youngest of four siblings on my mother’s side. It was a radio contest and the winners were announced one morning on the local AM station. I can’t remember if my poem was read over the air. Regardless, I had won my age group, and my mother was over the moon. 

In our home, the radio was a constant, especially in the mornings. Amid the local news and weather, we occasionally heard songs such as Dancing Queen, or something by Gordon Lightfoot. We always listened to Paul Harvey later in the day. After my father left for work at Mower County Soil & Water Conservation, having heard the day’s grain prices, my mother settled down with a second pot of coffee and listened to “Party Line,” a call-in show that was not only emblematic of the social fabric of our community, but helped my mother feel connected because we lived so far from town. She had lived her whole life in small cities, in churches, in schools, and being alone with herself seemed to drain her dry. My poem put me in esteemed company, if only for a very few minutes. 

I don’t remember what my poem said or why I said it. In my mind now, I see it written in crayon on otherwise blank notepaper, hearts drawn near the top of the page, but I doubt I was that young, and I doubt my mother would have allowed me to submit it as such. Perhaps she even rewrote it on lined paper with her precise schoolteacher handwriting before we walked the envelope down our long driveway and tucked it into the mailbox, misshapen from too many scrapes with the road grader, for pickup. 

Because she died when I was twelve, I cannot ask her about these things, things that I suspect are fiction, but for which I have no more reasonable memory. No doubt I extolled my cousin’s virtues in the poem, in schoolgirl terms, though I actually knew him very little since he was at least 10 years older than me and living in Minneapolis, a veritable Oz two hours north of our farm, which instantly escalated him to star status. 

Kevin had a job, and money, or he must have, because he would show up late for Christmas gatherings every year with some expensive and hastily-bought gift that, instead of offending us with its obvious lack of planning, thrilled us because we rarely had a lot of money spent on our presents. (My favorite was the Simon electronic memory game, even if I did have to share it with my brother.) We came to expect those gifts, so when he stopped attending the annual Christmas get-togethers because he was spending time with his girlfriend, our Christmases lost the sense of surprise and indulgence, even romance, he brought with him.

It could be that the poetry contest was the first time I believed I could be a writer, or maybe I never thought I couldn’t be one. My mother had been a 1st grade teacher before moving to the country to marry my father, so reading and language and storytelling was something I’d taken to early, not because it was genetic (we were adopted), but because the house was filled with books for young children, and, also, her expectations. 

Most of her old school books were lined up on built-in shelves in the unfinished basement, but she had a small set of bookends on her dresser in my parent’s room that held just a few treasured volumes. Most were religious, and I particularly remember something by Anne Morrow Lindbergh, but tucked between two hardcovers was a hand-bound book of poetry, with very few pages, handwritten, and illustrated in pencil. Even now, I can nearly feel the silky twist of rope that threaded through the pages because I stroked it with my thumb whenever she would let me investigate her things, usually on rainy days. 

I can’t remember what her poems were like, or whether they were any good, or if the book was anything more than the result of a school project she’d had to complete many years before, but what I did know is that they were written by my mother. My mother had a book of poetry. A whole book! And it was evident to me then that if something was in a book, no matter the size, it was valuable. And it was precious, not just because she kept it in a place of some honor, but also because it was tidy, and deliberate, and somehow alive with a person’s history. 

Years after my mother died, my father got remarried and anything that my mother had owned of value, antiques collected by a family of collectors, was sold. The profit was used by my new stepmother redecorate the house, erase the lingering presence of my mother, reverse the decay that had started to eat at its edges. Anything that wouldn’t bring in money, like that handwritten book of poetry, was moved down to that partially renovated, but still prone-to-flooding basement. Not carefully placed on shelves, but piled in boxes, one on top of the other like a small city of remembrances. I had no interest in rescuing the objects of my childhood because I was about to leave for college. Well practiced at packing my own memories into boxes labeled simply “Better Times” and storing them in some dark corner of my mind, I had little affection for what I would leave behind. 

Their marriage lasted less than a year; the renovations had not been enough to make two people unfit for each other stay together. My mother’s things remained in the basement as water seeped in each spring and mold grew up the new drywall, my father living alone upstairs, maybe believing the memories stored in the basement would be enough to hold the house, and himself, up.

Our basement had always frightened me as a child, its many rooms hiding spots for spiders and mice, and any other kinds of menace I could imagine. When I was very young, the basement had been used to clean, weigh, and carton the eggs our chickens produced, and the process left behind bits of feather and residue from cracked and leaking eggs long after the chickens were gone.  

When our washing machine broke down and we couldn’t afford to replace it, my mother rolled out a decades-old monster of a machine that had lurked unused under the stairs for years. It washed our clothes in its round gut, but didn’t remove the water that a spin cycle would. She had to wring each piece dry through a press that resembled a large pasta maker. It was hard work, and we didn’t yet know about my mother’s glitchy heart. Later, even after a new automatic washer made the laundry easier, she never descended the stairs to the basement without a small brown bottle of nitroglycerin pills tucked into a pocket.

After she died and the laundry became my responsibility, I’d go into the basement as infrequently and as briefly as possible, dash up the stairs when I was done, especially after seeing my first horror movie, “The Evil Dead.” The basement stairs were free-standing and the large space underneath, with built-in shelves and cupboards, had served as a pantry. There were still jars of my mother’s canned goods—peeled peaches and bulbous tomatoes, yellowed cucumber pickles in pale green brine growing a grotesque virus of garlic and dill—stored amid opened paint cans and retired pots and pans, like bloated body parts in jars in a mad scientist’s lab. 

When my father died five years ago, having spent the majority of 22 years alone in the home he and my mother had had built during the first year of their marriage, my husband and I were tasked with emptying out the house for sale, and we confronted what turned out to be the actual horrors of the basement. After years of flooding, the resulting mold, and my father’s growing poverty and passivity, most everything abandoned in the back rooms of the basement had disintegrated, forming a two-foot undulate layer of debris that had to be shoveled and scraped off the floor. 

We picked through the mess, searching for survivors. An old stuffed bear looked to be in good shape, but, unearthed, it was missing half its face, like some storybook phantom, eaten away by mice looking for nesting material. Even the shelved books were ruined, musty, their pages reduced to dust at the corners or stuck together with damp. I now have four plastic tubs stacked in my own basement that hold a spare number of rescued items moved from that house to mine.

I don’t know what happened to my mother’s poetry book, the one I imagine she had kept on her dresser to remind herself of who she had once been. I’d like to have it now, so I too could have a tangible representation of the faded but inextinguishable passion for words that seemed always to burn within her. Perhaps that’s why she was so thrilled by my poem, that winning poem, despite the obviously questionable object of my affection. Maybe in that poem, she could see herself in me. And she was relieved to know that despite my adoption, I was her daughter, that she had successfully lit a flame in me to write something just as tidy, deliberate, and alive. I wish now that I had written that love poem for her, but then, maybe, it was. 

Ad infinitum / Vigilance

Ad Infinitum

The first time it happened, we got out the books. Each one of them said this was likely to happen. Well, maybe not likely, but possible. Babies have seizures. They just do. Most of the time when there is a fever; and he had one. No one talks about it, but it’s more common than you’d think. That’s what the nurse in the ER told us after his second one, and his third. They gave us a DVD and a booklet. Our doctor told us her brother had had seizures as a child, and he was just fine. So we tried to believe we were normal. That what was happening was normal. That the panic was normal. Oh it was there, that fluttering bird, like Millay’s but with less hopeful feathers. But we talked ourselves down each time, like a negotiator on a bullhorn shouting to the suicidal that everything would be all right, that bailing out was not the answer, that we should just back away from the ledge. We convinced ourselves that as long as we didn’t panic, this very abnormal thing, this thing no one talks about, would move along. Nothing to see here but a dark cloud briefly obscuring the sun. The brain, like a hard drive, just needs to reboot sometimes. But after the next one came a CT scan and an appointment in neurology. It’s difficult to convince yourself that that is normal. Then the blood tests, the MRIs, the medications, the therapy, the special classrooms, the emergency phone calls. That time on the plane, already taking its place on the runway, and the pilot and all the passengers forced to return to the airport: that felt nothing like normal.

At no time in my fantasies about parenthood did I predict this sort of dissonance. Isn’t that why I took vitamins and said yes to those screening tests? A co-worker asked one day, “What, had you thought it was all going to be perfect?” And what do you say to that? No? Yes? Maybe? So we lived in a kind of maybe for a long time. That maybe things would be ok. That maybe babies grow out of these things, even though the DVD and booklet warned us that a child who has one seizure is more likely to have another, and so on. We would have to be watchful. We would have to be diligent. One of us would sleep with him at all times. We would keep our phones near us at all times. By the fifth, I suppose the likelihood of his having more had grown so exponentially I should have known then that the panic would soon find a place to perch, it’s tiny talons clutching on my aorta, its beating wings drowning out the beat of my own heart.

***

Vigilance

The night is quiet, the hum
of the air-conditioner in the window
is like no noise at all. I watch your chest move
rhythmically beneath the thin sheet, the sheet
pulled up over your thin arm, your arm
pulled up alongside your cheek. I can’t
see your eyes. Your small foot twitches again, against
my leg, and I stop, don’t move a muscle, don’t
take a breath, the quick rhythm of my heart
beats loudly in my ears. Slowly,
lightly, I press my leg against your leg and wait, wait
for the next rhythmic twitch, but the next
doesn’t come. I should reach over, put my finger
in the soft crook of your arm—at 8, still
more meat than sinew—, and slowly, lightly
pull your arm down from your cheek. I should look
at your eyes, see if your lashes beat rhythmically
against your cheek, a sight that sounds
an all too common alarm so quiet
you make no noise at all in the night.