ice storms

ice storms: rousing. beautiful. treacherous. unpredictable. silent. unnerving. still. winsome. smothering. haunting. worrisome. electric. luminous.

seems apt that my boy calvin was born into one.

a good time was had by all

The kid picked himself up and dusted himself off on Christmas morning after a difficult Saturday full of partial seizures. Despite the worry and sleep deprivation because of my son, plus all the horrors that are going on in the world, yesterday I was able to enjoy some peace and quiet hanging out with Calvin as he crawled and stumbled around and "played" happily by himself while Michael cooked a Christmas meal.

Yes, a good time was had by all. Calvin was a joy all day and he went right to sleep at bedtime. He slept soundly through the banter of six lively diners just one floor below who passionately discussed politics, books, photography, responsible journalism in the age of what's-his-face, and included a number of (mostly my) dirty quips. Yesterday ended up being one of the nicest, stress-free Christmases in recent memory.

These glimpses of relative normalcy are what keep me going in the long run, and I am grateful to the stars and back that such can be so.

christmahanukwanzaakah

There was very little that was merry about yesterday; our sweet boy endured a dozen or more partial seizures from dawn until well after dusk. I laid with him in his bed upstairs all day as he napped on and off, waking only to have the next seizure. At times he'd cry with a look on his face as if imploring me to make his hurt stop. I threw extra Keppra down him plus several doses of extra THCA cannabis oil but nothing seemed to stop the fits. There is little doubt in my mind that he was suffering at the hands of the benzodiazapine withdrawal, which I had reinstated three weeks ago.

Even so, I manged to get outside just after sunset to walk Nellie at the fields, which were shrouded in mist, while Michael stayed home with the kid. He'd spent much of the day doing the grocery shopping for two holiday meals and preparing our annual Christmas Eve dinner and dessert. Though we are not Christian, we enjoy celebrating some of the secular traditions of the holiday, namely the Kolster family bourbon eggnog.

After we put Calvin to bed and kissed him goodnight, I slipped out again with Nellie off-leash, treading on the icy sidewalks to see Woody, my octogenarian friend who lives three doors down. He let us in and, in usual form, offered me a bourbon on the rocks. I declined this time, then went into his den to pet Trixie the cat who was curled up in front of a fire. Nellie joined in and licked her ears. Before leaving, I gave Woodie his gift: a bottle of blended Canadian whiskey, his drink of choice. He hugged me and, with rosy cheeks that I kissed, said, "You guys are the best. I love you." I returned the sentiment, wishing him a happy Christmahanukwanzaakah as I left. Woody chuckled and waved goodbye.

I shuffled home, entered a warm, aromatic house and poured a couple of much-needed eggnogs for me and Michael, who had been busy putting the finishing touches on a rack of lamb, a potato and celeriac gratin and bouquet of dainty asparagus. With Calvin in bed, we sat at the table, candles lit, poured ourselves a bit of Cotes du Rhone and recounted the day's sorry events. Still, I was quite humbled, thinking of the Syrian refugees and other immigrants who have endured a most harrowing year, every scrap of their existence, including loved ones, left behind or violently taken. I considered our afflicted child, weighing our difficult circumstance against all we have: a cozy home, Michael's solid employment, plenty of food and drink, running water that is free from lead, a loyal pup, an affectionate child, a lovely garden even in winter, and a seemingly infinite supply of music, friends and love. Again, I realize our immense privilege.

Tonight we host Christmas dinner for some of our favorite secularists. On Michael's menu is a spiral cut hickory-smoked ham, cauliflower gratin and roasted Brussels sprouts. And with those less fortunate in mind and those facing uncertainties of other myriad kinds, some of whom we've donated to in lieu of giving gifts, I'll no doubt be toasting that which is paramount now perhaps more so than in recent years: for love and compassion to conquer fear and hate.

hopes, regrets and lamentations

hopes:

Fewer seizures in two-thousand-seventeen. To get Calvin safely off of his benzodiazepine. Time in warmer climes. To hear Calvin speak a word. More time outside. For the world to be at peace. Continued health. More time to write. To see more of my peeps. Forgiveness. To become a better human being. For the liberty of those who live under tyranny. The understanding of others. Love and humanity. An end to war and starvation. Leaders who are deserving of respect and admiration. More time to read and sleep. Freedom and equality.

regrets:

Self pity. Cranky mama. Selfishness. Missed opportunities. Falling-out. Staying put. Loss of contact. Too few walks through the woods. Not getting to San Francisco, Seattle or New York. Not drinking enough water. Impatience. Resentment.

lamentations:

Too many seizures. Too many missed days. Ugly Americans here and abroad. Racism. Bigotry. Misogyny. The regrettable exit of President Obama and his family. Monotony. Frustration. Dread. The election of an infantile, boorish, ignorant, dishonest, narcissist fiend. Greed. Corruption. Dying children. Torture. War. An incoming loser with a facile and grossly limited world view. Hate. Despots. Oligarchies. Fascism. Cowards. Fools.

Photo by Michael Kolster

no merciful god

A zillion tiny white flakes fall from the sky, some form swirling clouds while others drive with apparent purpose to the ground. Each, I think to myself, stands for one of us, each a unique example of a precious life that will come and go on this earth.

Today I watched several videos of grieving victims in Aleppo—mothers, daughters, brothers, fathers, sons—survivors of attacks by Russian and Syrian barrel bombs and guns. As I rested under my down cover and watched the flakes fall, I pondered my fortune to have been born in a time and place that is—at least for now and for me—free from tyranny and war.

I see the images, and others filmed in Venezuela, South Sudan, the Philippines, and marvel at the world’s misery wondering if someday—perhaps soon, and because of the troubling incoming administration—it will be our own.

Today is one of those days when I keenly feel the weight of what it is to be a caregiver of an afflicted infant-toddler-tween these past twelve years—the monotony, the restriction, the sleep deprivation, the worry, the dread, the frustration. And then I page through hundreds of photos of Syrian civilians—their skin stretched tightly across hollow faces, their dirty hair and garb tousled with blood, boys holding dead baby brothers, parents grieving the loss of every one of their children, some of them burned or buried alive, motherless toddlers bloody and in shock over the shelling of their homes—and I know I have no reason to complain. I know without a shred of doubt that there can be no merciful god.

During the night the flakes turned to rain. A glossy crust now cakes a snowy plain and a mist has replaced the wind. Branches sheathed in ice melt revealing their winter hues—rust, deep emerald, cardinal red. On the other side of the world, Aleppo appears in shades of gray with black holes gaping where windows used to be, like so many mouths’ silent screams.

We have a child who wants for nothing but to be warm and fed and loved, which is partly why we don't participate in giving gifts this time of year. Instead, we give to those in need of food and shelter and clothes, those who find themselves, for no good reason and in glaring absence of a merciful god, homeless and starving amidst swirling clouds of smoke, bits of shrapnel and rubble from fires and bombs and guns.

@picture-alliance/abaca/M. Sultan/

a hard rain's a-gonna fall

Because Aleppo, because tyranny, because the hard rain that has already begun falling in this nation, because Bob Dylan, because Patti Smith, because the power and beauty of music that calls us to think and weep, resist, ponder and dream.

Oh, where have you been, my blue-eyed son?
Oh, where have you been, my darling young one?
I’ve stumbled on the side of twelve misty mountains
I’ve walked and I’ve crawled on six crooked highways
I’ve stepped in the middle of seven sad forests
I’ve been out in front of a dozen dead oceans
I’ve been ten thousand miles in the mouth of a graveyard
And it’s a hard, and it’s a hard, it’s a hard, and it’s a hard
And it’s a hard rain’s a-gonna fall

Oh, what did you see, my blue-eyed son?
Oh, what did you see, my darling young one?
I saw a newborn baby with wild wolves all around it
I saw a highway of diamonds with nobody on it
I saw a black branch with blood that kept drippin’
I saw a room full of men with their hammers a-bleedin’
I saw a white ladder all covered with water
I saw ten thousand talkers whose tongues were all broken
I saw guns and sharp swords in the hands of young children
And it’s a hard, and it’s a hard, it’s a hard, it’s a hard
And it’s a hard rain’s a-gonna fall

And what did you hear, my blue-eyed son?
And what did you hear, my darling young one?
I heard the sound of a thunder, it roared out a warnin’
Heard the roar of a wave that could drown the whole world
Heard one hundred drummers whose hands were a-blazin’
Heard ten thousand whisperin’ and nobody listenin’
Heard one person starve, I heard many people laughin’
Heard the song of a poet who died in the gutter
Heard the sound of a clown who cried in the alley
And it’s a hard, and it’s a hard, it’s a hard, it’s a hard
And it’s a hard rain’s a-gonna fall

Oh, who did you meet, my blue-eyed son?
Who did you meet, my darling young one?
I met a young child beside a dead pony
I met a white man who walked a black dog
I met a young woman whose body was burning
I met a young girl, she gave me a rainbow
I met one man who was wounded in love
I met another man who was wounded with hatred
And it’s a hard, it’s a hard, it’s a hard, it’s a hard
It’s a hard rain’s a-gonna fall

Oh, what’ll you do now, my blue-eyed son?
Oh, what’ll you do now, my darling young one?
I’m a-goin’ back out ’fore the rain starts a-fallin’
I’ll walk to the depths of the deepest black forest
Where the people are many and their hands are all empty
Where the pellets of poison are flooding their waters
Where the home in the valley meets the damp dirty prison
Where the executioner’s face is always well hidden
Where hunger is ugly, where souls are forgotten
Where black is the color, where none is the number
And I’ll tell it and think it and speak it and breathe it
And reflect it from the mountain so all souls can see it
Then I’ll stand on the ocean until I start sinkin’
But I’ll know my song well before I start singin’
And it’s a hard, it’s a hard, it’s a hard, it’s a hard
It’s a hard rain’s a-gonna fall 


Written by Bob Dylan and performed by Patti Smith

steeled for the storm

The solstice on its way, days are getting shorter and colder, and just today snow has done its wonders to change the look of things. Broad-leafed rhododendrons curl up like cinnamon-stick figures and bows hang low under an icing of white. Some of these days are dark for me, what with Calvin's seizures, an election gone wrong, and the making of what appears to be shaping up into a Trumpian empire of greed and despotism.

My boy is home sick today, having suffered a grand mal yesterday morning only five days since the one before. These illnesses lower his threshold, perhaps leaving his brain ripe for electrical storms. I steeled myself a week ago and reinstated his benzodiazepine wean. The plan is to reduce it every week by a mere 0.04 mgs twice a day. At that rate—and at his current dose of 2.84 mgs per day (down from a high of 35 mgs) it will take about another year to get him off of it completely. Having said that, I may slightly increase the titration to 0.06 mgs while halving its speed to make the math a little simpler and to give Calvin a longer break between each wean.

The recent two-month pause in the withdrawal has seemed to reinforce my logic that one way to escape withdrawal seizures and other withdrawal side effects is to get him off of his benzo, clobazam, aka Onfi, once and for all rather than hover at the same dose for part of eternity; as long as he is on it he will continue to habituate, causing withdrawals. Until then—and likely for months after its total elimination—he'll probably continue having withdrawals which, ostensibly, should fade over time. My hope is that once he is free and clear from the drug, his number of seizures will improve, as will his balance, behavior, focus and well-being.

As I sit here writing this, free-form, I realize that my son's painful and protracted drug withdrawal stirs emotions not unlike what I am feeling about the election outcome and the prospect of the incoming administration. I'm afraid, feel sick to my stomach at times, dread the future, and suffer some despair with each electric-shock-of-a-nomination that the orange demagogue puts forward. Like with my son's regimen, my mind is laser-focused on how we can get out of the mess we are in, the minority of American voters this election having chosen someone who is so painfully ignorant, narcissistic, dismissive, impulsive, dishonest, crude, unprofessional and unfit to lead this nation.

Perhaps it would help me to think of the baby-man with the bad comb-over as nothing more than a toxic drug, one that has terrible side effects—depression, insomnia and nausea being just a few—and can wreak havoc on the body politic, though is not immune to being flushed, once and for all. If done painstakingly, we can emerge from his smothering (I'm thinking of snow again) in an improved state having weathered the very worst. We just have to steel ourselves for the storm of the century, and think ahead to spring.

day six

He tipped over in the bath as the water drained from the tub. He shouldn't have; it was shallow. I let the our new nurse-in-training know that this was one of the signs I often see the night before a grand mal. It had only been five days since his last big seizure, so I mentioned that this omen—in and of itself—was not necessarily cause for alarm.

After I put Calvin to bed I noted in the daily journal many of the day's other harbingers:

*repetitive humming *not at baseline *warm red ear *didn't finish lunch *loud at home *poor balance *tons of eye poking *unusual screech in bathtub *rashy butt *tons of drooling *lots of rocking in chair at school *needs to poop *confused at 6:00 pm (walking in circles) 

Despite the fact that I gave him a little extra THCA cannabis oil at bedtime, hoping it might thwart another seizure (he'd had two partial seizures the day before), he suffered a grand mal just before five this morning. I never know what triggers them or why sometimes they are more frequent than at others.

As the months pass, Calvin grows, and we reduce his benzodiazepine slowly, he is gradually having slightly more seizures. My fear of this trend causes me to want to stop the benzo wean completely, but I know if I do he will likely continue to suffer habituation and withdrawals. The only way to free him of these, in my best estimation, is to get him completely off of the benzo once and for all. So I push my fears aside and continue chipping away at his dose by tiny bits, hoping his brain won't suffer such bad hits.

I'm trying to think ahead to a time where, if things get much worse, we might need to turn again to the pharmaceutical world for some new and promising med. Besides the benzo and two cannabis oils, Calvin is on no small dose of Keppra, which is why I want him off of the benzo in case we want to start him on another drug. My hope is that Epidiolex might be available soon, the drug made from plant-derived cannabidiol (CBD) which is in trial right now. It seems the logical drug to choose considering Calvin has failed ten chemical ones, plus he has responded so well to the THCA oil I make.

He's at school now, having gone in late today. Extra morning THCA oil seems to work to keep the partial seizures at bay. Yesterday, we had our first significant snow, and it's on the ground melting. I kid myself by saying that it's only three months until spring. I hope the winter takes it easy on us this year. We could use a break.

Photo by Michael Kolster

under my skin

It’s a Saturday night and I’m feeling frustrated, angry and sorry for myself. While other mothers might’ve slept in past six or taken their twelve and thirteen-year-old sons to hockey practice or out to breakfast or shopping for clothes, or perhaps sent them to a friend’s house to play, I took care of an agitated kid whose misery I couldn’t translate. I wrote in my daily "Calvin" journal:

*banging a ton *intense *hyper *very stubborn trying to walk him past Woody’s house *seizure breath *terrible job at grocer WORST BEHAVIOR IN A LONG TIME TODAY. exasperating. *warm red ears SUPER AGITATED *not eating or drinking much *grousing like something hurts ... feels like another seizure coming already

A few times I lost my patience, raising my voice at my howling kid, whose constant whining was getting under my skin.

By evening, a half hour or so after I gave Calvin his nighttime dose of benzodiazepine, he had calmed down some, and we’d put him in his bed to play with his toys for a bit while we fixed things for supper. When we went back upstairs to ready him for bed and to give him his last few meds, we found him sitting in his own shit, which had squished out of his diaper, up his back and inside his shirt, smeared onto his linens and onto some of his toys. And though the mess could have been much worse—and it has in the past—it still added to the weight of a miserable day.

Earlier, I had watched Calvin squirm in Michael’s arms, watched his pendulous eyes rhythmically shift and dart the way they're prone to do. I imagined what we would be doing had Calvin been born a typical child instead of one missing a bunch of the white matter in his brain, instead of suffering seizures, instead of being addicted to antiepileptic drugs that don't work to stop the fits. Perhaps he’d be helping me chop tomatoes and avocado for a salad, or maybe he’d be scrolling through some of his Dad’s new photographs. Maybe he’d be reclined in front of the fire reading a new book, or perhaps he'd be outside walking Nellie, or curled up on the couch doing some homework, or just hanging out telling us about his day. And, at bedtime, he’d get into his own pajamas and brush his own teeth and crawl into his regular old bed and pull the covers up all by himself.

Then he'd tell me with real words—the kind that would soak luxuriously under my skin—I love you Mom, good night, I'll see you in the morning.

Photo by Michael Kolster