hopes and regrets

regrets:

having said the wrong thing. having said the right thing at the wrong time. a handful of half-read books on my nightstand. thin patience. having missed seeing david byrne on broadway. too much complaining. letting time slip through my hands. knee-jerk reactions. time on social media. missed and mixed priorities. complacency. too much focus on politics and the news. pettiness. friends' unanswered emails in my inbox that are over a year old.

hopes:

carve time out to read books during the day. get more sleep. work on my neglected memoir. take up running for the umpteenth time. get out with my girlfriends more often. more simple pleasures like bringing cut flowers into the home. be a better correspondent. get out of town. praise more, complain less. help elect a decent, experienced, respected, measured president. seizure freedom for calvin.

seizures and dreams

Last night in the wake of my son's seizure, while spooning him, I dream.

I'm in a small room in a strange, sparsely furnished house with a dozen others, none of whom I know. It's just after twilight, an indigo sky crowning a nearby mountaintop. Suddenly, the lights go out. Somewhere, whether in my head or from some eerie broadcast, a man's voice booms that everything is going to come down. It's clear the others hear the ominous message too; I see them scrambling about nervously. Then comes a low rumbling, one which I feel deep in my bones. Is it an avalanche? An earthquake? An explosion? Peering out a nearby window I notice that all of the homes nestled closely together into the mountainside are darkened too. I sit and fret, wondering if a tree will crash through the roof and crush me. I imagine the ceiling caving in, the earth swallowing us whole. I'm held captive awaiting my demise, only to wake to the sound of my son rustling under his covers. It's not yet dawn, and I hear the lonely rumble of passing snowplows, feel the house quake as the plows clear fresh snow from streets which are yet desolate.

With the exception of the unexpected seizure, all is well. Compared with years past, Calvin sleeps well after his grand mals and does not go on to have subsequent ones. No longer does he stay up for hours wired as if in a panic, his heart pounding, his fingers madly knitting. My guess is he is nearing full freedom from some of the effects of benzodiazepines and their withdrawal. Perhaps he is also benefiting from a much lower dose of Keppra than ever before. Maybe my latest batch of THCA cannabis oil is responsible for his recent, relatively low seizure count—only four grand mals this month and zero focal seizures so far—which is less than half his average monthly total.

As I drift back to sleep with surprisingly little worry about my boy, outside, tiny white flakes fall in windless conditions. Though the sun is far from rising, the sky is grey-white. The sleeping world is dark and still and quiet, save the rumbling of passing snowplows.

north star

Last night, while much of the world lit candles on their menorahs, celebrated the birth of the baby Jesus and prepared for the coming of Kwanzaa, I watched my son seize. He had fallen asleep about an hour prior, and just as Michael and I were readying for bed, I heard Calvin screech. When I got to him, he was reclined with all fours in the air, crooked, stiff, and trembling. There on his back, he couldn't breath. Quickly as I could, I unlatched his bed's safety netting and panel then, reaching in, yanked his right arm to turn him onto his side. Soon, oxygen began passing his lips again, which had turned a ghostly shade of grey-blue, his airway having been blocked by flesh or fluid.

Holding him close to me as he drifted back to sleep, I thought about the tens—perhaps hundreds—of thousands of others whose sons and daughters were also seizing, disrupting special gatherings and gift-giving, candle-lighting and festivities. I thought about refugees who had traveled miles, many to be separated from their parents, to be kept in cold cages, slumped on hard floors without their medications. I lamented the cruel way they've been forsaken.

Earlier, Michael and I had been moved to tears upon reading a message that one of Calvin's nurses, Rita, wrote to us in response to my recent post, hard conversations. Within her loving sentiments, she included this prescient quote:

"I want to know if you can get up, after the night of grief and despair, weary and bruised to the bone, and do what needs to be done to feed the children." —Oriah Mountain Dreamer

She went on to say:

I have the rare privilege of witnessing you and Michael do that day after exhausting day for years and years and years, perhaps for the rest of your lives.

You chose to share your beautiful, so severely limited son, a child who teaches us great lessons in compassion and loving more. In this gifting season, you all are one of the most profound gifts of my life.

Last night as I tucked him into bed, for the third or fourth time, he curled and cuddled into the covers, in his sweet peaceful way. As I kissed him goodnight, again, he gifted me with his sweet smile. He blesses me with his love. I am so grateful for Calvin.

I'm no believer in the folklore which teaches that Jesus is our savior and lord. But, because I have a child who inspires love, acceptance, compassion and empathy, I thought about Jesus, wishing others were so. And in pondering the stories of Christmas—the wise men, the refugees, the innkeepers—I realized Calvin is most like the North Star, bright and constant, shining on everyone no matter who they are.

Photographer unknown

happy christmahanukwanzaakah!

hard conversations

I sometimes speak with schoolboys and girls about my son. I tell them he is the best person I know. Not because he's my child. Not because he goes through hell and comes out the other side. But because he doesn't have a mean bone in his body. Calvin loves everyone no matter how fat or wrinkly or dark or skinny or disabled or poor or old or conservative or devout or liberal or ugly or American they are. He makes me want to be a better person every day, and yet I fail.

At a dinner party, I squabble about stories I feel are at best unconscious or implicit bias and at worst bigoted tropes being tossed around the table. Heart pounding, I struggle with whether to say something. Recklessly casting my doubts aside, I dive.

"Now might not be the best time to tell you I am Jewish and Black," I say, which everyone knows is false. I'm trying to make a point, condemn what I find offensive. Immediately, I regret my timing and reaction, my stinging words ruining what is meant to be a fun-filled evening and weekend.

I try to explain my perspective, recounting a time years back when I'd ignorantly used the term "White Trash," thus offending someone, not because she was poor—the comment was not meant to describe her—but because the term is an ugly slur for folks simply trying to eke out an existence. I hadn't before thought it offensive, but realizing with newly-opened eyes my affront, I apologized and have never again used the term. Then someone at our table defends the slur, perhaps to make me feel better, saying that anyone—White, Black or Brown—can be trash. I fiercely insist that human beings aren't trash, silently recalling the dehumanizing rhetoric of despots in describing good people as scum, rats, snakes, infestations. I think of the pathetic detention of refugees in our own nation. Tyrants and fascists seek to malign, blame, shun and eliminate those they deem unworthy. I think of Calvin. The conversation splinters.

I want to ask why being poor and underserved makes someone garbage. I wonder who in our circle, including ancestors, might have been considered as such, wonder how they were treated. I question if judgment is righteous when what it condemns sounds like bigotry. Rather, is the criticism of prejudice prejudice itself?

Still, I regret my initial timing and response, not because my reaction is at once deemed judgmental, but because I hurt someone I love very much. I did not consider fully the goodness of those I chastised. In doing so, did I aggrandize myself? I fear I was too hasty and harsh in my appraisal.

In a hurried moment after dinner I again attempt to address my reaction. First, I apologize for my folly. I want to describe White privilege to someone who has succeeded in the face of great adversity. I don't contest the hard work of anyone, their rising above neglect and conflict, their beating the odds, their ability to shine so brightly when so much of what they have come through and surrounds them is and has been hardship. These truths are evident. But they are not sole truths in existence. What I want is the time and space to say this:

If our names were Ashanti or Trayvon instead of names like Jennifer or John, we might not have gotten that prized interview, that job, that promotion, that apartment, that loan, that house in that nice neighborhood. We'd likely be making far less and paying far more than if our skin were whiter. Our net worth might be ten times less than those of our White contemporaries. If our boys were Black rather than White, depending upon where we live, they'd be three to six-plus times more likely to be pulled over, ticketed, fined, arrested, incarcerated, sentenced—perhaps even shot—for the same infraction as their White counterparts, or for having committed no infraction. If we were Black or Brown, we'd more likely live in food deserts, get subpar educations, drink tainted water, get inferior medical care and insurance, if any, receive less pain management, and be more likely to die in childbirth or languish behind bars. And if our Black children survived, they'd be far more likely to face punishment and detention for the same behaviors as fair-skinned students. If we were Black or Brown, we'd be far more likely to be the victims of predatory lending and voter suppression, far more likely to be thought suspicious, to be stalked in neighborhoods, to be convicted of crimes we didn't commit. It is truth that in this nation white skin affords a smoother, safer path through life and to prosperity than black and brown skin does, which is not the same thing as saying it is necessarily easy.

Later, someone uses the slur "dumpster divers" to describe homeless people, going on to say the majority of them choose to live on the streets and therefore don't deserve her charity. She says, essentially, that reverse racism is a thing. These notions are myths, easily disproved with the slightest scrutiny. For one, prejudice does not equal racism; racism is prejudice plus power (think 400 years of slavery followed by Jim Crow, segregation, state-sanctioned denial of civil rights, the War on Drugs, and current-day voter suppression and mass incarceration all backed by White authorities or, as a friend said, bigotry empowered by the system.) But I don't have a chance to debunk, which is frustrating and regrettable. I'm left wondering why the destitute so often garner contempt rather than compassion.

I go see Aaron Sorkin's adaptation of To Kill A Mockingbird. I know the story well. I watch the cast of characters—Whites, Blacks, fathers, lawyers, judges, motherless children, maids, innocent defendants, witnesses, poverty-stricken victims, abusers, Klansmen, heroes. Bob Ewell is a poor, White, drunken, racist, deceitful, bullying, abusive, widowed father of eight, and yet I wince when Atticus Finch says he's better than Ewell. I know what Atticus means. But contempt is no virtue, and so I find myself pitying the loathsome offender, but I physically ache for the innocent and doomed Tom Robinson and his family, who are Black, and therefore shackled in most every way imaginable.

I exit the theater making my way through crowded, misty streets thinking about the play and mulling over my earlier exchanges. These are hard conversations, requiring space and time and trust and openness and humility and listening. There are unknown truths we must all unearth, but best with love, respect, acceptance, tenderness, understanding and forgiveness. I close my eyes and think once more of Calvin.

Photo by Michael Kolster

party girls

Over the weekend I made a last-minute trip to celebrate my friend Heather's fiftieth birthday in the Big Apple. It was an action-packed forty-eight hours, which included strolling elbow-to-elbow with thousands of others through the misty city, getting caught in a rainstorm, eating ridiculously delicious food including a street-vendor hot dog (amazing), devouring the eye candy at Saks Fifth Avenue, taking in a Broadway play, seeing the Rockettes at the Radio City Music Hall and hanging out with four badass party girls in Midtown.

The perfect ending to the weekend was seeing Calvin's huge smile last night when I got home. His response was heartwarming and made me think he knew I'd been gone. Sadly, over the weekend, his sixteen-day seizure-free stint was broken by a grand mal on Saturday morning while I was gone. Still, I'm hopeful he'll have another long stretch. So, too, am I hopeful to get back to Manhattan—the city that never sleeps—before too long. I just wish I could bring Calvin along.

Birthday Girl in blond.

day fourteen

Just a quick note to tell you, dear readers, that Calvin has been seizure-free for two weeks. This, on the heels of an increased dose of a homemade THCA oil, has been one of his best stints in five years; he's had only three grand mals and two focal seizures in the last thirty days.

When choosing from two strains of cannabis before making my last batch of THCA oil, I opted for the one whose parent is Chemdog, the strain I used to make Calvin's oil for five years until it became unavailable. Chemdog rendered Calvin's daytime grand mal seizures virtually non-existent, relegating them almost exclusively to the nighttime, and keeping them in relative check during a difficult and protracted benzodiazepine wean. My hope is that this offspring of Chemdog, called Crescendo, will be even more effective.

It is difficult to describe how liberating it feels to look at a calendar page free of orange and blue highlighter and black Sharpie circles indicating seizures. It has been my wish that Calvin might somehow outgrow his epilepsy. My backup wish is for him to be free from seizures and side effects, to find a treatment which stops his seizures without causing him pain, discomfort or emotional and psychological strain. Epilepsy is a moving target, so I don't know if I have found the solution. But at least I can celebrate a small triumph, and hope for more in the coming days.

feeling loved

Half-empty bottles of wine and spirits were strewn across a handful of countertops. Partygoers stood elbow to elbow, clad in their finest threads for a housewarming, and perhaps to celebrate the impending start of winter break. A few friends I hadn't seen in ages, others I'm sure I had run into just days before at the grocery store. In all, I bet I gave and got a hundred hugs or more amongst the gathering of wicked smart, humorous, well-informed, and compassionate people.

Midway through the evening I met someone new, a former student of the college. I began by telling her that my husband teaches photography there. Then, realizing how little that defines me, I went on to describe my role in taking care of a son who has significant disabilities—visual impairments, cerebral palsy, incontinence, wordlessness, seizures (rarely these days do I mention the apparel design career I had a lifetime ago.) The woman, who was accompanied by her mother-in-law, quickly realized she knew me. Excitedly, she mentioned that some years ago she had spoken to me on the phone inquiring about cannabis therapy for her older sister's epilepsy; the party's host, our mutual friend, had put her in touch with me. I strained to remember our conversation amid the scores of similar ones I've had with others over the years, mostly with parents of children with epilepsy. Eventually, it came back to me when she re-expressed her gratitude in speaking to another who has intimate personal experience (as opposed to most neurologists) with the torments and trials of profound disability and epilepsy.

My new friend went on to say that she'd read my blog. She told me that her sister had since passed away. She expressed interest in meeting Calvin. I had a nice, parallel conversation with her mother-in-law. We all embraced in solidarity.

For the remainder of the party I caught up with a number of my lovelies while Michael mingled with others. I came away from the evening with a warm glow of feeling so very loved. In one night I'd caught up with folks I hadn't seen in years. I got to know others, if only slightly, better. I made the acquaintance of a few. I set a long-overdue date with a favorite neighbor and friend. In my mind I even reminisced about my years designing apparel and how, though the work itself was challenging, rewarding, creative and fun, it was ultimately tarnished by vile hierarchies, bureaucracy and wicked internal power struggles of the corporate world.

The next morning, while sitting at my desk trying to eke out a word or two while Calvin had one of his curious meltdowns, I reflected on the previous night's engagement. I realized how different my life is than any I've lived before. I'm glad to be rid of the stresses of the corporate apparel world. And though I wish Calvin were a healthy child, I'm grateful for the chance to be his mother, for the challenge it represents, for the learning it affords, for the people I meet as the result of being his mother, and for his love and the love and communion of countless others, especially in the face of doing one of the hardest things I've ever done.

surrender to winter

Stepping ankle deep into freshly-fallen snow impedes my progress. But perhaps I need to slow down, take it all in, amid these thoughts of all-things-Calvin swirling around in my head like snowflakes in a squall. Dizzying, these ruminations on seizures, mania, drugs, and uncertain futures keep me up at night and nag me all day long.

Yesterday, however, was anything but a frenzy, trapped indoors with a mostly-happy and very huggy boy on this season's first snow day home from school. From just past dawn until nearly dinnertime, Calvin and I traipsed and flopped from sofa to table to bathroom shutters to bed and back again as the storm laid down its tiny white crystals, several inches in all. It was too wild, windy and frigid to brave the outdoors.

Today, though, everything is still. Clouds drift by nearly imperceptibly, beyond them peek patches of a soft blue backdrop. Bows laden with snow bob and sway with as little motion. As the sun works its way into the sky, blobs of snow drop from limbs and icicles drip diamonds which drill into the powder.

Winter is the time for dreams, when storms relegate us indoors, when the cold slows blood to molasses, when days are short and bedtimes early, when the low sun casts thin shadows over immaculate fields.

Where are we going? Who will we become? When will we be released? Will our days ahead by any easier? When and how might we succumb?

While at the fields, I ran into one of Michael's former photo students, Niles. He was taking pictures of snow and light, of colors faded in the mist of late morning. We embraced, talked of school and family, of his imminent travel to Paris and of speaking French. I urged him into the forest, where I'd seen sunlight eking through the tangle of branches. I had just emerged. He was headed there. Speaking to Niles about Calvin reminded me, thankfully, that these days are easier than olden ones.

It feels okay to surrender to winter. Here, there's really no escaping it. I remind myself to slow down. Step outside whenever possible. Muse on the falling flakes and the different paths they take. Contemplate the placement of shrubs, the whistle of a night train, the peachy feel of a loved one's cheek. Dream of last-minute trips to New York and of more seizure-free days. Embrace the chilly air, its crispness and ability to create starlit nights. Bask in the glow of a low sun casting shadows of living things otherwise gone unnoticed.