moon and mercury

There is the moon in a mackerel sky, staring down at me through gossamer clouds, the same moon illuminating the harbor masts not far from where my mother fell. It’s as chalky and round as the ball of a bone she broke, and the blood moon of the night before as full and red as her pain; perhaps its gravity brought her down. The surgeon cut below the break where he drove a metal spike, then fit a foreign ball into its joint. I wonder if she had an anesthesia dream.

As I glare skyward, I feel weary—all these years pocked with seizures, drugs and sleepless nights, counting them on calendars scarred with black and day-glo ink, splitting pills, pressing oils, weaning meds. My skull is full of woes of my mother's Alzheimer’s, my brother’s Parkinson’s, of friends’ children’s epilepsy and all the layers of senseless suffering in between for which no grand design exists, and if it does, it's sick.

The children, some huddled near my feet, ask after Calvin, tossing me epilepsy questions, pondering the mess of his pain and disability in classrooms mostly healthy, white and neat. Some of their faces are masked in fear and sorrow while others beam with enlightenment and hope. I tell them they can make a better world if only they'll embrace difference as much as things the same.

Dipping my lips in the sweet burn of bourbon, the moon and the mercury work their gravity sweeping my boy toward an epileptic fit. Outside, the storm rolls in, the mercury falls, its heavy chrome-like beads running into one thin strip. Finally, the sky swells and the rain thrums unrelenting, soaking withered leaves, quenching parched ground and bark. It reminds me of how, on the night of the blood red moon, I cried for the first time in weeks.

Photo by Michael Kolster

about time

We've been talking about it for years. This was going to be a first. All this time we've been reluctant—afraid we might disrupt the other diners. Nervous there might be spilled drinks. Doubtful we'd be able to stay seated long enough to finish our meals, and so we've never taken Calvin, who is eleven, out to dinner at a restaurant. Not once. We figured it was about time.

Yesterday, our boy was in relatively good spirits at the cafe and, later, enjoyed a decent stint at the agricultural fair where he walked without balking, sat without shrieking and even pet a few of the beasts. I'd brought enough of his pre-diced food plus his late afternoon cannabis oil dose so we didn't have to go straight home after the fair. In all of those things we saw opportunity, so we nabbed it.

For the most part, Sundays at four o'clock are quiet at our local watering hole. Instead of bellying up to the bar, though, we camped at a four-top near the windows overlooking the river. By all accounts it appeared that Calvin, who is now big and stable enough to sit relatively safely in his own chair, was having a good time. You can see for yourself, here—a little crazy, but not too out of the ordinary considering the antiepileptic drugs he's on, not to mention the active benzodiazepine withdrawal.

After we ordered and were served, then had a chance to put a good dent into a tasty heap of greasy fries, Calvin decided he was finished, so he pushed back his chair almost tipping the table over. I got up and led him around by the hand, carefully guiding him between obstacles. Eventually, he settled into a nice bright spot next to our table where the painted brick was rough and cool on his tongue and fun to pat. I stood with one eyeball on my precarious kid, the other on the disappearing mound of crispy goodness. From there, I simultaneously ate the fries, stole sips from Michael's beer and watched Calvin, and without causing some sort of ruckus—something we've been dreaming about for years.

day at the fair

mr. dwyer's class

Yesterday, from the front corner of Mr. Dwyer's fourth grade classroom, I began with my usual introduction of Calvin, told them of his premature birth and of the anomaly in his brain. I went on to explain a little bit about epilepsy, and then I answered their questions and listened to their comments.

The children wanted to know what Calvin’s favorite food is, how many pills he takes every day, if he can read and write, if dogs and cats can have seizures, if Calvin has any siblings and what things Calvin likes to do. One girl wondered whether if she said hello to Calvin he’d remember her. Another wanted to know if epilepsy is contagious and still another wondered if he likes sweets. Perhaps my favorite question of the day came from a towheaded boy asking me what would happen if Calvin was in space, which made me wonder again about hyperbaric pressure chambers. One sweet boy, whose brother I know is a lot like Calvin and who also has seizures, raised his hand and said, “Calvin is a good person.”

I told them I think Calvin likes breakfast sausage best, which I cut up into bite-size pieces so he can feed himself. As I counted, out loud, the number of pills Calvin takes—two-and-a-half tablets in the morning plus one liquid, one chewable and two powders, five pills at noon, two-and-a-half pills at night plus one liquid and, in addition, two cannabis oils a few times a day—some of the kids mouths dropped open. I realized later that I had left out two liquid drops. I tried explaining why my husband and I decided not to have more children, that we'd been older than most parents—forty—when Calvin was born and that we had wanted to give one-hundred percent of our attention to Calvin with the hope of being more able to help him meet his potential. I made sure to add that all parents have enough love for more than one child, even if one of them is disabled.

As best I could I tried to describe stigma, tying it to the old myth and fear of epilepsy as contagious and that era's segregation, shunning and institutionalization of those plagued with the disorder. I assured the children that, although Calvin may not visually respond to them, if they say hello, he is aware of their presence and he might remember them—remember their voices—if they were to greet him every day.

One boy raised his hand insisting, “Don’t ever take a drug where the side effect is worse than what you are taking it for,” and so we talked about the side effects of the drugs Calvin is taking, the headaches, the dizziness, the lethargy, the hyperactivity, the insomnia, the withdrawal.

In explaining why Calvin is the best person I know, I said that he would never make fun of someone or say something mean about someone, and that he’d love anyone no matter who they are, what they look like, if they speak with an accent, if they are missing a leg or if they wear old clothes. I explained that if anyone ever tries telling them that someone is bad just because of their religion or their native country or their skin color, that they should stand up and say, “No, that isn’t true,” because we are all the same on the inside.

After forty-five minutes, I stood to leave and the class gave me a giant wave in the fashion of big arena sports fans, then a girl named Jenny handed me a card she’d drawn for Calvin with a flower on the front and, inside, a masked, glassy-eyed cat, or perhaps a racoon. As a decent illustrator myself, I am most impressed with her skill.

I left the class with a smile, my insides warm and squishy, and as I exited the building, I held the door open for a little girl and her mother. As I watched my lonely shadow yawn and stretch across the sidewalk, I listened to their easy conversation wishing that it was one that I could be having with my boy.

ms. kavanaugh's class

I don’t get nervous anymore before I enter a classroom full of grade schoolers, perhaps because I’ve done it enough times to know that it’s a safe place, even to go discuss my son Calvin and his many disabilities. Yesterday’s visit was no different. The group of second graders huddled in close around my feet, eager to hear me talk about the boy in the framed photo I’d brought to show them in case they’d never met Calvin.

After Ms. Kavanaugh, whose brother has epilepsy, introduced me, I began telling the children that Calvin, who is eleven but can’t speak and can’t walk very well, was born six weeks early and missing part of his brain. I went on to explain how, because of this anomaly, it takes Calvin a very long time to learn things and, to add insult to injury, when he was very little he started having seizures. Two of the children, one whose dad is an EMT and another whose mom is a nurse, seemed to have a good notion of what seizures are, even knowing enough to tell the class that sometimes breathing stops during seizures and that some seizures can lead to death. The others seemed uncertain, so I did my best to try to explain the different kinds of seizures and how they manifest.

When I opened it up for questions, several hands popped up at once:

If I have trouble breathing is that a seizure?
How old was Calvin when he started having epilepsy?
How do blind people know where to go?
What does Calvin’s day in class look like?
If I hit my head will I get epilepsy?
What kind of medicine does Calvin take for a headache?

I calmed their concerns about breathing trouble and hitting their heads (a handful of the kids wanted to tell me about their injuries) and I explained what it means to be legally blind versus totally blind, and how people like Calvin who are legally blind often have enhanced senses of touch, hearing and smell. I told them about the drugs and their side effects and how sometimes I think they're as bad as the seizures, then I told them about the cannabis and how it seems to be helping.

When asked what Calvin’s favorite things to do are, I told them that, perhaps more than anything, he loves to hug and that he probably would love everyone, no matter what they look like or sound like or where they're from. I told them he’s a very loving boy who likes to eat and take baths and snuggle, all of which, Ms. Kavanaugh pointed out, are things he has in common with most kids.

At the end of our time I took one last question from a cute boy with thick brunette hair and dark eyes.

"If Calvin could talk, what question would you ask him?"

I told the boy that was one of the best questions I’d ever been asked, and then mentioned how good it would be if Calvin could tell me what was hurting him, but since I only had one chance to ask a question, I said I’d ask Calvin if he was happy.

Wrapping up, after having asked the children to show kindness to Calvin and to others who are different from them, the class and I applauded each other. A few children corralled around me to tell me their stories. One blondie who had been itching to relate his, told me how his sister made him so mad once that he punched a wall and something metal hanging on the wall fell off and hit his head so hard that the piece of metal bent around his head, then he made the shape of an omega with his hands.

“You must have a really hard head, dude!” I said smiling, and he grinned a toothless grin and we gave each other a high five.

As I was leaving, Ms. Kavanaugh took me aside and said that the brunette boy who had asked the last question told her that if it were he, he’d ask Calvin how he could help make him feel better.

At that moment, I felt I’d failed his question question. It was obvious, and yet in the moment I hadn’t thought of it, even though I think it a lot, often wondering and wishing Calvin could tell me how the seizures and the drugs make him feel and if and where he hurts. I left hoping that smart boy grows up to be a pediatric neurologist, but not just any pediatric neurologist, a good one.

Later, when the bus pulled up to drop Calvin off at home, his aide, Mary, told me that a girl in the class I'd visited came up to her and said, “I learned in class today that Calvin is a lover!” I chuckled knowingly and swept my boy into my arms, and he gave me a big smile and a huge, spidermonkey hug.

Kids from Calvin's kindergarten class

these are the days

It’s more of a gasp than a cry—the sound my son Calvin makes at the start of a seizure, which usually rips me out of sleep to find him shuddering in his sheets, his eyes peeled open and yet blind to the world.

After Michael and I unlatch and lower Calvin’s safety bed panel, I grab the syringe of THC cannabis rescue med then, gently holding his jaw, I squirt a tiny bit into his mouth and rub it into his gums. While he spasms, as best I can I scoot him back from the wooden lip of his bed so that he doesn’t bust a toe or jam a finger, his limbs jerking in quick, rhythmic waves. Within a minute or so, the spasms stop and my boy begins to whimper and shiver like a cold, wet pup. I have no idea if he remembers any of it. I hope not. I also hope that the cannabis oil will continue to thwart the clusters of seizures.

In the days between these seizures, I’m apt to partially forget about the actual despair they spark; the complex, gloomy prospect that he’ll—we’ll—likely suffer a lifetime of them is soon displaced by the simple fear and dread of the next one rolling our way.

In the time between these seizures, Calvin has some good days and some not so good days, but as one cute brown-skinned boy, who four years ago was in Calvin’s first grade class, said to me recently, “It looks like Calvin is growing up so fast lately.”

I took his sweet and insightful comment to mean that he’s noticed Calvin progress, stand taller and walk better, and the boy is right and kind to have mentioned it to me.

These are the days when I forget my despair.

Others are noticing Calvin’s gains, too: his bus driver, as she sees him step up the steep stairs all by himself; the staff at the grocer who see him amble down the aisles, at times without holding our hands; our neighbors, who watch Calvin teeter, sometimes happily, down the sidewalk with little help; Woody, who saw a smiling Calvin seesaw in his rocking chair better than either of us have ever seen him do.

Yesterday, as Michael and I walked Calvin across campus to downtown for a second day in a row, a little girl with light olive skin and sprigs of golden curls emerged from her mother’s parked car and crossed the street to join us.

“Hi Calvin!” she said, waving and smiling as she approached.

She reminded me that she is in Mr. Shea’s class, Calvin’s mainstream fifth grade class, which I visited last week. I thanked her for her kindness and for going out of her way to come and say hello. As she got back into her mother’s car I waved, then held my hand over my heart and smiled at her mother as they drove off.

These are the days when I forget my despair.

A reader wrote to me this morning upon having seen yesterday’s post, sunday stroll:

I have a question. This picture made me smile. He looks like a happy boy with an obviously loving dad. When I see differently-abled kids and their parents out, I frequently have the same reaction—a smile at the child and then the parents. But then I worry that this type of reaction comes off as condescending or patronizing. After all, did I smile at ALL the parents and children I just passed? I want to be respectful, but I also want to share my awe and appreciation for the hard job they've been given, and well, I like to smile at kids. I don't know. Do you have any thoughts? I hope this question itself isn't intrusive. —Abby

I answered:

dear abby, wow! i am so grateful for your thoughtful question, and i know just what you mean. i've had the same thoughts about smiling at other disabled people. my husband and i sop up smiles from others. never does a smile for calvin and for us go by unnoticed or unappreciated. we always say, "did you see that person smile at us?" it is a wonderful feeling. it is a feeling of validation, that we have a place in a world which often marginalizes us and turns away. thank you. thank you. thank you.

These are the days when I forget my despair.

Photo by Charlie Muller

sunday stroll

Today, the first day it has felt like autumn to me, we took a Sunday stroll a mile or so across campus to downtown. Calvin walked much of it on his own as he did yesterday, which is a major feat for him. It seems the further we get away from a benzo decrease the better he does; it has been almost six weeks since the last one, having paused the wean briefly to introduce vitamin D and zinc supplements intended to help his withdrawal and possibly even his seizure control. I'll let you know how it goes.

As for Calvin's behavior during this short respite from the benzo wean, it's pretty damn good. He's sleeping like a champ and not staying up until midnight totally wired. He's walking well and is slightly less stubborn. He's waking a bit happier, playing with his toys longer and drooling and finger-snapping less. I just hope we can expect things to continue getting better after we get him off of the clobazam completely, which at this rate might take another year to eliminate the last six milligrams he takes every day. And when this feels like forever, which is often, I try to remind myself that we are going in the right direction and, with any luck, it will all be downhill from here, and perhaps we'll have a lot more successful Sunday strolls in our future.