tree of life

The nuns taught us there are two ways through life—
the way of nature ...
and the way of grace.
You have to choose which one you’ll follow.
Grace doesn’t try to please itself.
Accepts being slighted, forgotten, disliked.
Accepts insults and injuries.
Nature only wants to please itself.
Get others to please it too.
Likes to lord it over them.
To have its own way.
It finds reasons to be unhappy ...
when all the world is shining around it ...
when love is smiling through all things.
They taught us that no one who loves the way of grace ...
ever comes to a bad end.

—Spoken by a mother grieving the death of her son, from the film The Tree of Life, by Terrence Malick

To me, Grace and nature are one in the same—no way to separate them. Nature’s universe encompasses all—the rocks, the rivers, the forests and deserts, birds, animals, fish, earthquakes, tsunamis, tempests, light, energy, the clouds, stars, planets, galaxies, black holes and supernovas. Nature does not discriminate between the healthy and the sick, the good and the bad, the wealthy and the poor, the devout and the secular.

Mindful of that, I can accept my precious boy who, through nature's indifference, became less of what he could have been yet more of what he is: loving, seemingly cognizant of little, living in the moment, wordless, wanting only essentials, simple, pure, changing with the passing of time, yet not changing at all. Like a tree whose limbs are beautifully twisted and gnarled by ages of drought, freezing and the peril of storms, covered in soft lichen as if jade lace stitched onto a taffeta gown, Calvin’s beauty is one of a kind, touching, timeless, makes me tremble at times.

And if I must one day see him go first, if his time here will be only fleeting, I can feel at peace knowing he’s returned to that from which he came—the earth, the sky, the moon—and I’ll carry him around as I had once before, as if he is my heart's inner star and soul's universe, and just as much as he is now, he’ll continue to grow inside me like a little tree of life.

Photo by Michael Kolster


so grateful for

thanksgivings. opening our home to others. running water. the knock and ping of radiators. pumpkin pie. autumn crops. red wine. rain. wooden floors. generosity. the orange glow flowing from twilight windows. embracing. moms and dads—those alive and ones who’ve passed. espresso. the smell of burning embers in a cold mist. moonlit walks. bodies of water. rain. a space for contemplation. gatherings. constellations. art. sidewalk strangers. this spot on the earth. candles. dogs and children and turkeys, not necessarily in that order. the light-play and shape of naked trees. a space for making. laughter. relative health. cake for breakfast. crushing acorns. music. the smell-taste of bacon. homemade cannabis remedies. quiet streets. birds. cooking with gas. bourbon, of course. old friends dropping in as if they’d never left. rolling flames. neighbors. seizure-free days. furry dogs. husband. son.

Photo by Michael Kolster


just a little person

Loving this song and thinking of my boys.

Just a Little Person written by Jon Brion and performed by Deanna Storey. Video by Diogo Correia


rain and moon, refugees and stones

I don’t care that I’m getting drenched, that rain is dropping on my face, clinging to my lashes, nose and chin. I'll be dry and warm soon. Out here, the air is fresh and clean, so I take it in as most I can, so much so I feel it in my fingertips. I walk past the same candlelit house I ducked into last night, unannounced, where I gave everyone a hug, sat on John’s lap and gave his husband Mark a kiss, where Luz and Marcos tried to serve me up a glass of wine and a dish of food, and where Lauren sat, smelling of the roses reflected in her cheeks.

All these wonderful people in such a small place, I thought, grateful of my tight-knit town of gay and straight, black and white and brown, Guatemalan, Mexican, Native American, Somalian, French-Canadian, Asian, European, Californian, New Jerseyan, young and old—the list goes on.

This rain is cleansing, particularly to my soul, which I leave open and unguarded. Some might warn me of an assault, my heart some kind of guileless target, but instead, its spongy muscle is sopping with love and compassion for that which some regard as other.

Did Calvin teach me this?

On my walk home in the dark, raindrops dancing in puddles like electric ants, I consider the recent vitriol spewing from the mouths of those with hardened hearts filled with hatred fueled by fear and ignorance. How difficult is it to imagine our ancestors’ families fleeing to this land to escape persecution, war and famine? Why do some of us feel so entitled to hoard this chunk of earth we like to call our own? Why are some so quick to blame those who look different, speak a different tongue, wear different clothes? Can't people realize we all come from the very same cosmos? All of us—the world over—love our children, love this earth, love each other. Every faith and culture has its fanatics, even Christians.

If there is a God, might there be just one?

Looking up, the clouds begin to break and the moon peeks through—the same moon illuminating hungry refugees drenched inside their tiny boats, shivering in the same water that will touch these shores, the same moon which glows off the faces of frightened children, weary mothers and desperate fathers who have fled a plight worse than we can ever know, while my Calvin sleeps in a cozy bed, safe and warm.

As the rain falls, now mere drops from the bows of trees, a dark stranger in a hoodie draws near. I tell him not to fear my dog, that she is friendly. A handsome, swarthy face peers out into the streetlight’s beam, his young smile reflecting mine. I assume he is a college student on his way home or to the library to read.

“I thought she was afraid of me,” he says with a foreign accent and a sparkle in his eyes while reaching out to let Nellie sniff his hand.

My impulse is to invite him to Thanksgiving. I chuckle and wish him goodbye, so grateful that he, and others like him, have come to this most homogeneous state, have graced my presence and enriched this town, its faint mélange my salvation. And in my effort to find metaphor I think of those refugee boats, of oars, of life rings and savers. Then, I think of the rope that pulls these boats ashore, strong because it's braided with different fibers, each relying on and bracing its neighbor, and in case one strand breaks, the rope maintains integrity. The same goes for the fabric of society; our history of immigrants, of refugees, has made our nation what it is, which, though not perfect, is great in so many ways.

And we mustn't ever forget upon whose captured backs and bloody sweat this very nation was shaped: the slaves.

The rain hasn't ceased, it has just moved on and soon will be drenching the backs of children who have no dry clothes, no food, no shelter, no country to call home. And yet some of us, in our warm castles and in glass houses, are bent on building walls, fueling fear and hate, blaming others, and throwing stones.


epilepsy's conundrum

I wrote in Calvin’s daily journal last night at six, “CALM (suspiciously).” I should have heeded my suspicions and given Calvin that extra dose of THCA cannabis oil at bed, but I didn’t because he was so calm and had seemed to get past some of the seizure omens which I typically use to gauge these sorts of things. After all, I don’t want to over medicate my kid if I don’t see the need, even if it’s just with weed, but then again I'd do almost anything to save my son from even one seizure. That's one of epilepsy's conundrums.

Just after six, I kissed my son and my husband goodbye and patted Nellie on the head, then swung by Lauren’s to pick her up for a bite to eat and a drink. We saddled up to the bar, sipped our cocktails and had just begun eating when my phone vibrated in my pocket. As always, I jumped, and probably said fuck, because my cell phone is reserved solely for urgent calls about Calvin.

I answered the phone and Michael told me that Calvin had had a grand mal seizure, shorter than most, but a seizure nonetheless. It was only seven p.m., an unusual time for Calvin to seize, but when I remembered the recent time change, it made more sense. I hung up and said I’d be home soon as I could, but after thinking about it further, I called him back and asked him to give Calvin an extra dose of THCA oil if he could.

When I returned home all was calm, Michael perched in the dark on Calvin’s changing table, the glow of his ipad illuminating his face. Our boy seemed calm, secure and fast asleep, so, after readying two extra doses of THCA oil, I got into our bed not wanting to disturb our boy.

At 10:45 p.m. I heard Calvin wake up, so I changed his wet diaper and gave him one of the syringes of oil, then put him back to bed. An hour later he woke to a second grand mal seizure, so this time we gave him the Diastat (rectal Valium) intended to stop clusters of seizures, then I crawled in next to him. His breathing was somewhat labored, so I hoped he hadn’t aspirated in the night.

In the next several hours Calvin suffered a few more events, some heart-racing, semiconscious partial seizures, which twist his gut into audible knots and sometimes cause him to wretch. At 2:45 a.m. I gave him the second syringe of cannabis oil in small, careful squirts.

It’s nine a.m. and he’s still in bed, still seeming to be having partial seizures, though they are difficult to discern in a boy like Calvin who also seems to be sick. I’m asking myself, is he sick? Is it the reduced CBD? is it the benzodiazepine withdrawal? Is he outgrowing his other med? Is it puberty causing this uptick in nighttime seizures of late? Regrettably, there is no way to know.

Lauren called this morning to see how Calvin was doing. Natasha is walking Nellie with her little boy Adam, though it’s only twenty-six degrees outside. I’m sitting here writing and reading about benzodiazepine withdrawal, having come across this important link. I told Lauren I didn’t know if I was doing the right thing by taking Calvin off of the benzodiazepine (clobazam), worrying that doing it might impair him, indeed kill him, since withdrawal can sometimes cause a rash of seizures that no medication can stop.

I’m worried sick about losing Calvin to uncontrolled seizures, catatonia, coma, psychosis, pneumonia. He’s an impossibly difficult boy to raise, and sometimes I feel the urge to run away. At others, I can barely stand to imagine what life would be like without him here to hold and squeeze and kiss.

This archived video of one of Calvin's typical grand mal seizures might be difficult for some people to watch, but critical for understanding the plight of epilepsy. If you cannot view this video, click here to watch it on You Tube.


signs and culprits, symptoms and guts

Seven days have passed since Calvin's last seizure. All things considered, day six was pretty good. I watched him bowl at the Special Olympics, cheered him as he pushed each ball down the track with a bit of help from his aide, Mary. The event was packed and loud with too many players and, thus, a lot of waiting. Calvin made it through half a game and then began to tire, but not before he managed to score a spare or two. In between players he sat at a table and snacked on grapes and nuts, carrots too. As he "asked" for more by clapping his hands, Mary helped him practice his emerging sign for "eat," which was pretty cool to see.

At home last night Calvin was mostly quiet, not amping up like usual, though this morning's whining, lack of appetite and the rash developing on his chin are omens for a coming storm. He's due to have a seizure tomorrow morning—eight days his recent average stint—but not if I can help.

To stave off his seizures and keep them to a minimum when indeed they do occur, I've decided to give him a prophylactic extra dose of his daily THCA oil on nights I'm suspicious of a looming fit. In the past, doing so has seemed to isolate his seizures to a single one instead of two or three.

In other news, two lab results of my latest batch of CBD cannabis oil, though divergent, both show a slightly more dilute mix. And in trying to analyze why Calvin has been so vexed of late—spinning like a top at times and perseverating with his snapping fingertips—I chose to pause his benzodiazepine withdrawal for a spell and see what happens if I reduce his CBD; it has never been crystal clear that the CBD has had any anticonvulsive affect. Since doing so six days ago, our boy has been a little less upset. Still, it's impossible to really know what culprits might be at work—the benzo withdrawal symptoms erratic and protracted, the conflicting lab results ambiguous, perhaps scores of other variables are at play. I just do my best with the signs and facts I've got, mostly relying on my gut a lot, which, with a kid like Calvin who cannot speak and one who takes a lot of drugs, feels like the only thing I've got that makes any sense.