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.