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.

giving thanks

date nights with michael. frosty mornings. compassion. democracy. cooking with gas. scarlet begonias. just-raked lawns. school days. fires in the wood stove. diversity. coffee au lait. brined turkey. the turkey (featured below.) seizure-free days (sadly today is not one of them). clean air and water. homemade gravy. truth. ten-dollar jeans. pecan and pumpkin pie. the high school's team calvin (you know who you are.) hot showers. humor. côtes du rhône. smellie. drive-thru ice cream parlors. our republic—if we can keep it. charity. misty fields. slippers. FIP radio. barbara and her lemon bars. mary, rita and sue, who help us take care of calvin. cozy beds. chef spouse. neighbors. the ability to dream. possibilities. checks and balances. youth (will save the world.) community. simplicity. smiles and hugs from the sweetest boy i know. memories of arnd. righteous, fearless public servants. teen-sized onsies. healthy conversations about politics and faith. le creuset. johnny-jump-up. most female legislators. forgiveness. wonky home. champions of equal rights, civil rights, a living wage, health care for all, criminal justice reform, separation of church and state, the right to vote, climate control, gun safety measures, the right to control one's own body. sautéed carrots. dinner parties. sleep. so many dearly loved ones, near and far, (you know who you are.)

The Turkey

finding balance

It's been challenging lately to find time to sit down and write, in great part due to Calvin's seizures. So far this month Calvin has had nine days with seizures, translating into missing quite a few days of school due to the drowsiness and fatigue that often come in the wake of grand mals. Sometimes I can send him to school the day he awakens to a seizure, but other times he catnaps—on my lap much of the time—all day long and into the next.

When Calvin does go to school (like today) after being home for several days in a row, I'm faced with balancing my need to get outside and move my body, with my desire to write, with my need to do paperwork, grocery shopping, yard work and chores.

Today, since it's sunny, I spent a couple of hours raking leaves in the back yard. And though I don't love raking, I do get some exercise and the result is most satisfying—the revealed green grass contrasting with copper pine needles and the brown bark mulch beds. The low sun casts lovely shadows across autumn's purple-, bronze- and red-leaved rhododendrons and azaleas. Amid so many seizures, I still have much to be thankful for.

Nonetheless, if nine days worth of seizures so far this month seems like a lot, it is. But taken into context, it is, for Calvin, kind of par for the course since 2015, the year after we began weaning him from his benzodiazepine, Onfi, aka clobazam. His breakdown looks like this:

2015: 51 grand mals and 70+ focals = 121+ seizures (weaning Onfi)
2016: 51 grand mals and 105 focals = 156 (weaning Onfi)
2017: 58 grand mals and 95 focals = 153 (weaned Onfi in February)
2018: 59 grand mals and 78 focals = 137

With one month to go, I'm predicting Calvin will end this year with 68 grand mals, though probably only 66 focals, for a total of 134. It's important to note that this number was attained on zero benzodiazepine, far less Keppra, a recent growth spurt and raging hormones.

So though Calvin is having slightly more grand mals, he's having fewer focal seizures while seeming to be happier, calmer, sleeping better and being more compliant. But by saying over one-hundred seizures a year is par for the course is by no means saying it is acceptable or that I've resigned myself to that number. I haven't. I just need to find the right treatment and balance for Calvin and for us, one that limits his seizures and suffering from side effects.

So today I made a call into Calvin's neurologist to speak with him further about starting Calvin on Epidiolex, a plant-based pharmaceutical version of CBD (cannabidiol), one of cannabis' medicinal constituents. A friend's daughter is doing quite well on it, and I'm closely following an Epidiolex Facebook parent group, noting the drug's side effects and most effective dosing, which is less than what most prescribing doctors seem to think. My hope is that since Epidiolex is cannabis-plant based, maybe it could work better for Calvin than other, traditional pharmaceuticals have in the past.

And for those of you wondering, Calvin still takes Palmetto Harmony CBD oil plus a THCA oil that I make. I've been tinkering with the doses of each for months since Calvin went forty days without a grand mal after first starting the CBD oil eighteen months ago. Regrettably, we've yet to repeat that kind of seizure control since. I imagine it's all about finding the right balance. Sadly, I haven't yet.

Calvin catnapping last Friday after I picked him up from school.

sometimes you just need to cry

Put down your phones, take nine minutes, turn up the volume, listen and let yourself feel something—anything.    

watch/listen on you tube.

           

here and there and in-between

Tommy Orange. That's the name of the young Indigenous American who authored the novel I'm reading called There, There. I'm only a couple of chapters in, but already I'm engrossed with his artful storytelling of people and place. A native of Oakland, California, where his story unfolds, Orange references a quote by Gertrude Stein in which, on a return trip to her beloved Oakland forty-five years after first having left it, she describes with painful childhood nostalgia that "there is no there there."

Stein lamented that Oakland was no longer a place where a child “could have all anybody could want of joyous sweating, of rain and wind, of hunting, of cows and dogs and horses, of chopping wood, of making hay, of dreaming, of lying in a hollow all warm with the sun shining while the wind was howling.”

In Stein's mind and in reality, the place had changed, as all things inevitably do. But my sense is that modern Oakland's inhabitants, like the ones in Tommy Orange's novel, believe there remains much "there," there, though perhaps of a different kind.

I was reminded of Stein's quote when I read a meme a friend of a friend had posted on social media. The manifesto read:

Welcome

You came here from there because you didn’t like there, 

and now you want to change here to be like there. 

We are not racist, phobic or anti what-ever-you-are, 

we simply like here the way it is and most of us actually came 

here because it is not like there, wherever there was. 

You are welcome here, but please stop trying to make here like there. 

If you want here to be like there you should not have left there to come here, 

and you are invited to leave here and 

go back there at your earliest convenience.

The little blank box below the meme compelled me to comment. I first noted how ugly, poorly written, racist and xenophobic the manifesto is. I should've added that is it hypocritical. I protested the meme's perceived targeting of Black and Brown immigrants and refugees (Midcoast Maine is home to a growing number of African immigrants, particularly from Somalia). I went on to state that people come here fleeing war, famine, poverty, oppression, violence and genocide, not to seize this nation like its first colonizers did—settlers who sparked a bloody pogrom of its Indigenous. And I condemned the use of the term "what-ever-you-are" (tellingly, not "whoever-you-are") as a bigoted one.

The only constant is change, I said, the places in which we live in perpetual flux. I asserted that immigrants help us see the world through new eyes, challenging our assertions and our view of the status quo and, perhaps, encouraging us to see how we might become better people through love, compassion and charity for others who are different from ourselves. Diversity is strength, I added, variety the spice of life.

Regrettably, rather than engage in discourse, embellish, defend or concede their stance, the person who shared the meme blocked me. Initially I regretted that perhaps I'd been too harsh. 

After posting my comment to the meme, I learned it had been defended as simply a remark to people moving here from nearby states. The argument seemed flimsy at best, duplicitous at worst, so I did an image search of the meme to see what more I could glean. I found American flags posted in the footers of the memes along with warnings such as, No amnesty! Go back to the shithole! Go back to Suckistan! These sentiments confirmed for me the meme's intended target: those who are far from your average Vermonter.

Pondering it further, and looking to Calvin and his disability to inform, I'm reminded of the ways in which some strangers gawk at him. I remember the way I felt—and sometimes still do even after living in Maine eighteen years—like such a foreigner here. It's in the way some folks are watchful and guarded, the way we—as adopted San Franciscans—don't always fit into the literal and figurative landscape which, in certain time and space, can be sober and conservative. I realize that, even if the meme-manifesto were speaking only to people from other states, it's still an unwelcoming, protectionist, hidebound dispatch. It still says, "Stay away!" and "You're not like us!" and "You're not welcome!" and "Go back to where you came from!"—each caution a far cry from the road sign staked in the shoulder of the turnpike upon entering Maine which says to residents and visitors, "Welcome Home."

And as I read and transcribed those postings, I recalled the same hateful rhetoric which spews and echoes from the White House. Those sentiments do not embody the America I love, nor the one I'm proud of. And I realize folks who isolate themselves, who are averse to change and who have qualms with others are fearful of the unfamiliar and unknown. But I'm grateful for this ever-changing nation, and of new neighbors from faraway places. I'm grateful for the here and the there and the in-between.

what to do?

I'm at a loss. Not sure what to do to lessen Calvin's seizures. It's not that they're raging off the charts, at least not for him; relatively speaking they are holding at about the same number that he's had the past several years, which is about five or six grand mals per month plus a smattering of focal ones. But because of them he's missing too much school. Since starting in September, he has been absent for a total of nearly four weeks. So the status quo is not sustainable. I have to change something, but what? I do not know.

I can't decide whether I should increase his CBD oil or remove it for a spell. I don't know whether to replace it with a plant-based pharmaceutical version of it called Epidiolex. I'm not sure whether my latest batch of homemade THCA oil is as effective as the last one, or if I'm giving him too much, too little. I'm loathe to try any other traditional pharmaceuticals since, having already failed ten of them, the chance Calvin will respond to subsequent ones is minute, i.e. less than five percent.

I wish I had a crystal ball that could tell me what to do.

Thankfully, Calvin has been much easier to care for these days. He's been calm, cuddly and compliant—opposite of the way he was when he was drugged up on high doses of three powerful pharmaceuticals which suppressed, though did not stop, his seizures. Nowadays, keeping him home from school in itself is not as much of hardship as it used to be, it's just happening too often and it means I can't get much of anything done—can't read, can't write, can't walk Smellie, can't exercise, can't grocery shop, can't do chores.

Today will be Calvin's first, hopefully full, day of school this week. He's not even halfway through the month and he's already had four grand mals and at least two focal seizures. Something has got to give. I just don't know what that something is.

Photo by Michael Kolster

grief and loss, gratitude and love

As I filled out the lengthy adaptive skills' assessment, it was hard not to tumble into despair, clear that my son, who entered high school this year, cannot perform the simplest tasks that most infants and toddlers can do. When answering in the negative to five consecutive questions regarding various abilities, the instructions prompted me to skip forward to each subsequent section. The survey, which was supposed to take about ninety minutes to complete, took me no more than a quarter hour.

My fifteen-year-old cannot feed himself with a spoon. He can't dress himself, bathe himself, wash his hands, brush his hair. He can't put on his shoes, much less tie them. He can't grasp a marker or crayon to scrawl. He can't catch an object or give me one when asked to. He can't match shapes or colors, can't build blocks, can't speak any words. He can't run, can't play peekaboo, isn't toilet trained, can't open most doors. He can't get into or out of his bed on his own or pull up his duvet when he gets uncovered.

This sweet, handsome child of mine, though loved beyond measure, is a daily reminder of the grief I felt for years, beginning just before his birth when we first learned something was terribly wrong with him, and the loss I've felt ever since. Though he is alive and in ways vibrant, plus cute, loving and affectionate, he will never bring us the kinds of joys we thought parenthood had in store. To add insult to injury, we won't experience the bonus of being grandparents either.

From one perspective, having a child like Calvin represents to me an immeasurable loss, and at times I wince hearing and seeing the myriad of activities in which other kids and their parents regularly delight. But perhaps some of the joys that accompany a child's mastery in sports or academics or art or judgement or even virtue are in ways narcissistic ones and, perhaps, as a friend related after having read my post principles, those kinds of inclinations may not be ones parents are necessarily or ultimately in control of or responsible for.

Having said that, I still grieve the loss of a child who is still alive, in that my child is not healthy or very able to engage in most activities. However, I feel utterly grateful for what Calvin gives me. He still wants to be held like a baby. He sits in our laps and smiles when we lavish him with kisses and tickles. He chirps and coos at night when I reposition and cover him. On most days he greets me with a big grin when I help him get off the bus. He holds my hand in the grocer, making a beeline to the meat-department cases (his preferred place to camp out in the store) and smiles broadly when I hug him and say, "this is your favorite place, isn't it?" and then wipe the drool from his chin.

What's more, I feel abundant gratitude for the things that being Calvin's parent has brought to us—new and interesting friends, knowledge of a broader world, deeper self-reflection, insight, compassion, courage and empathy, profound feelings of despair and happiness (yes, we embrace both), and rare, intense experiences. As a result, I'm thankfully a different person from the one I used to be—I challenge authority instead of bowing to it, I question everything I used to take at face value, I'm more forgiving of myself and others, I'm more forthright and assertive and, I hope, more accepting of others and of what I can't control, and I'm not bothered if, in my advocacy for Calvin, some people don't like me.

And so though Calvin will likely remain much the way he was when he was a toddler, and though knowing that will sometimes get me feeling down, I feel fortunate to have this extraordinary boy as my son. He's one in a million, to be sure. A child to be celebrated and loved.

a man and his family

There once was a man who loved birds, especially chickens, and goats and fish and his lovely wife ...

Please click here and expand the Blurb image to page through the picture book and read more ...

A Man and His Family

smellie

I don't often write about Smellie—aka Nellie, Smellers, Killer—beyond mentioning that I take her for long walks at the college athletic fields near our home. But I really should gas on about her more than I do. She brings us much needed joy and levity and, like Calvin, loves us unconditionally, something most of us in this world could use more.

Smellie, who doubles as a Muppet, makes us laugh. When she runs, her ears flop up and down like a bird taking flight. She resembles a lion when she stalks certain prey. She loves to be underfoot, insisting on forever positioning her head beneath our hands in order to be pet, and loiters anywhere that bits of food might drop. With her muzzle in our laps, she pokes our arms like a dolphin in attempts to be caressed, and nearly crawls out of her skin when we stop. With huge brown eyes that kind of remind me of my mother's, she gazes at me like a daughter.

Our pooch, a seventy-plus pound eight-year-old, is ridiculously soft, fluffy and adorable. She isn't much interested in other dogs and is indifferent to strangers when sniffing for scraps of food or licking up vomit left by last night's drunken students. She rolls in bird shit, eats deer scat, and pounces in the muddiest puddles. Once, she devoured a baby bird after dislodging it from its nest. Another time she caught a chipmunk, and just once, a squirrel, violently shaking them until their necks snapped, then dropping them to the ground where their lifeless bodies unfurled (sigh).

As for how Calvin and Smellie get along, well, they mostly ignore each other, neither getting from the other exactly what they want. Calvin doesn't feed Smellie save the crumbs that inevitably drop from his place at the table, and he doesn't touch her unless she is sitting next to him in the car. Smellie doesn't give him kisses or want him to pet her. She steers clear of his path rather than get trampled. Each of them would probably prefer our undivided attention as only children.

Mostly, Smellie's a wonderful companion who gets me outside for exercise come rain or come sub-freezing temps, snow and ice and wind when I'd otherwise be hunkering down indoors. When we play hide and seek, she finds me every time. She follows me everywhere I go. She's gentle, loyal, sweet, and attentive. She mostly comes when she's called, and never wanders, even when alone in our unfenced yard.

We love you, Smellie. How lucky we are to have found you when we did. Please stick around a bit longer.

dragon moms

We hear our children shriek and see them seize. We hold them in their suffering, dab lavender on their wrists and feet. We dread and loathe their cries and moans, regret their frequent misery.

We lug their gangly, growing bodies, change their dirty diapers, wipe and salve their seats. As if infants, we watch them in their slumber. We lay our palms against their chests to feel them breathe. We bathe and dry and dress their fragile, flailing frames. Lamentably, we feed them endless medicines. Readily, we stroke and kiss their cheeks.

We cut their food into bite-sized bits and dole it out piece by piece. We feed them by the spoonful though they're toddlers, tweens and teens. We wash their hair, wipe their chins, brush their teeth. We thwart their falls and hold their hands to keep them on their feet. They may be always in our keep.

These kids of ours have made us into Dragon Moms, in great part because they cannot speak. We become their voice, translate their sounds and moods and movements, foresee and understand their wants and needs. On their behalf we challenge, question, crusade, condemn, critique. Protect their vulnerability. Despite our candor, others still neglect our pleas. We are sometimes seen as monsters—feared, maligned, too often misconceived. No doubt to some we're nuisances, hysterics, freaks. We're merely fierce champions of our uncommon offspring. Come walk in our shoes. Please see our rocky path. Please feel our aching feet.

We Dragon Moms—though not our wish—a rare, formidable breed.

Photo by Michael Kolster

on survival

On Saturday, I read an op-ed by a woman who had a third-trimester abortion. So many of the details she shared reminded me of my own pregnancy with Calvin—the fetal MRI, the countless ultrasounds, the wretched diagnosis, the empty spaces where brain matter was supposed to have formed but didn't. Just as the author experienced, a neurologist explained to me and Michael that Calvin would likely face developmental delays, might not crawl, walk or talk. What the doctor failed to mention, however, was that Calvin might be prone to having seizures.

I ruminated on the piece all weekend, even mentioning it to someone close to me. She asked me tenderly if, when I first knew of Calvin's brain abnormality, I ever considered having an abortion. She asked me, had I known of Calvin's troubles earlier in my pregnancy, if I would have had an abortion. She asked me, considering his seizures, insurmountable challenges and suffering, if I ever wished he hadn't survived. 

I did not consider having an abortion when I learned of Calvin's brain anomaly; my pregnancy was thirty-two weeks along. The thought never entered my mind, and no physician broached the topic. Had I known about Calvin's brain malformation earlier in my pregnancy, would I have had an abortion? I can't say for sure. Probably not. There were too many questions left unanswered for this optimist. As for my friend's third question about Calvin's survival, for weeks our boy struggled for his life. We were always pulling for him. He's here today. We love him. He's changed us in myriad ways. The kid has always been a fighter. Perhaps he teaches us about survival.

Having said that, in my very darkest most sleep-deprived hours, I do think about Calvin's mortality, sometimes even longing for deliverance for our child from his suffering, and from our strenuous, limiting, painful situation. I also worry about what will happen to him if he outlives us. Will people love and care for him? Will they keep him safe from harm? Will they be patient? Kind? Attentive? Tender? I think about how much easier life would be without having to take care of him—the constant vigil, the endless dirty diapers, the daily undertakings of a growing child who can do nothing without extraordinary help from others, the sleepless nights, the stress, the worry, the physical and emotional strain so taxing on my person. Then I imagine the enormous void he'd leave in my life, and I wonder, in that case, about my own survival.

principles

If Calvin were a typical child, I'd spend my days instilling him with these principles:

be kind. be honest. be forthright. show interest in those different from yourself. admit fault. be forgiving. be generous. be humble. hold onto hope. be curious. be grateful. be unassuming. take risks. be trusting with a modicum of caution. be accountable. be trustworthy. avoid making assumptions and jumping to conclusions. be courageous. be supportive and advocate for others. be empathetic. challenge authority. be charitable. be loving. celebrate diversity. be fearless. forge new paths. be productive. take time to relax. be patient. be tender.

I am acutely conscious of and lament the fact that Calvin won't grow up to express these principles as a teacher, doctor, philanthropist, climate activist, immigrant advocate, social justice champion, scientist, inventor, artist, author, or parent like many of my friends' children are no doubt considering. But as I write these words, I realize that Calvin in his own way exudes many of these virtues. Maybe they're written into his DNA. Perhaps he has garnered some of these ideals through our parenting, despite the fact I fail miserably at demonstrating some of them.

But Calvin is not a typical child. I like to think of him as extraordiary, a boy who daily shows his penchant for unconditional love, which might be the most-prized principle of them all.

Photo by Michael Kolster

caution to the wind

Despite trepidation, Michael and I made a rare one-night escape upstate with Calvin and Smellie. It had been over seven years since we'd made such a trip, heading north into the lesser-traveled parts of Maine. Though we used to explore a lot when we first moved here, we've done so only a few times since Calvin was born, mostly because of his seizures. Now that he is older and bigger, another concern is finding a safe place for him to sleep without fear of him getting hurt.

The height of leaf-peeping season, the colors in the hills were as dramatic as I think I've ever seen. Photo ops were afforded in every direction. Amid the vivid autumnal colors, placid Mooselookmeguntic Lake shined like molten silver.

Three hours after our departure, we settled into Idle Hour, a rustic lakeside cottage a stone's throw from the Bald Mountain Camps restaurant lounge where we were able to get glasses of bourbon on the rocks, take-away. A young woman seated at the bar surprisingly paid for our drinks, telling me that it was her day's random act of kindness. I'm not sure she realized how much her gesture meant to me.

Back at the cottage, while seated for minutes at a time on a futon and in Michael's lap, or in his johnny-jump-up which Michael rigged to a railing, Calvin passed the time contentedly as a fire in the wood stove crackled and popped. As usual, Smellie didn't venture far, even with the lure of the lake nearly at our feet.

At twilight, we eventually managed to settle Calvin into the middle of a squeaky queen-sized bed, propping a half-dozen heavy pillows around him. Michael began making his magic in the bare-bones kitchen, producing a perfectly cooked herb-encrusted rack of lamb, mashed potatoes sprinkled with some black trumpet mushrooms our friends had home-foraged, plus sautéed skinny asparagus. Thanks to the mild weather, we were able to dine on the porch with the door open, jumping up to check on Calvin every so often. After we finished our meal, an affable bloke from the cabin next door brought us several delicious barbecued scallops wrapped in apple-smoked bacon for dessert. He had visited us earlier and had asked about Calvin, his diagnosis and prognosis. Years ago we might have been incensed at such questions. These days we appreciate any genuine interest in our peculiar boy, even from strangers, particularly considering so many people gawk at or ignore Calvin, and some of my five siblings rarely ask how he is doing.

Before retiring to bed, I took Smellie for a short walk and noted the full moon rising in the mist over our heads. I wondered if Calvin's intermittent shrieking during the drive up had been due to the moon's gravity, wondered, too, if it were an omen. The grand mal at five o'clock the next morning—only four days since the last one—validated my concern. But regardless of Calvin's seizure, which was typical and self-limiting, requiring no emergency care, our adventure proved to us we should throw caution to the wind more often.

click on any photo to enlarge.