solstice

After a long hiatus, I finally broke down and did something I wasn’t sure I’d ever do again, which was to buy a Christmas tree and decorate it in time for the solstice. As in past years, I did it by myself, driving into a vacant lot then strolling between rows of tightly-packed trees searching for the perfect specimen. When I lived in San Francisco I had a bent for very large Noble firs nearly twice my size and with ample space between each sturdy branch, enough to allow the ornaments to display their grandeur—the sparkling pickle, the Santa head, the sombrero-wearing tomato, the iridescent glass ball, the Star of David holographic glasses—all gifts from my annual holiday party guests.

This year, succumbing to a slight longing in my heart for what in my mind is more of a solstice tree, its lights and shiny baubles reminding me of longer days coming, I went in search of the perfect little Charlie Brown conifer. I found it propped sideways against a picnic table, its trunk stuck in the snow. “How much for this one?” I asked a man with rosy cheeks whose answer, “Ten bucks,” was wrapped in a puff of cold air. I slipped him the bill, wished him well then grabbed the tree with one hand and laid it into the back of the car.

Once home, I dusted off a solitary box of Christmas tree trimmings, hanging the shiniest ornaments on the fingers of a thin tree no higher than my shoulders. I hope Calvin likes it, I thought, knowing how much he is drawn to light. Then I paused remembering why I'd stopped decorating trees in the first place, that a lonely hollow has carved itself into my heart knowing my boy will likely never help me decorate a tree, will never understand any of the holidays of the season. We will never make gingerbread cookies together, cut snowflakes out of sheets of white paper, make a snowman or push cloves into an orange. He won’t sing in a holiday concert or carol from door to door. He won’t write a poem about what the holidays mean to him or contemplate the significance of it all.

And, so, the essence of the holiday season remains for us: gatherings with friends over glasses of wine and spirits, plates filled with comfort food, rolling fires and laughter, celebrating the simple pleasures of life and the promise of longer days.

friday faves - clover (video)

From last May.

While surfing Facebook last Friday I came across two photos, one of a purple clover, the other of a beautiful little girl with the inscription, "In loving memory, Clover Dohman 6/23/09 - 5/23/13." Knowing that purple is the color for epilepsy awareness I Googled Clover's name and found this video, which reminded me some of the first year or so after Calvin's diagnosis, and is a testament to the often overlooked fact that epilepsy is menacing and can often be lethal.

My heart goes out to Clover's family and to all children and their families who suffer the scourge of catastrophic epilepsies such as Dravet syndrome. Do what you can to raise awareness and funds for a cure and advocate for the use of medical marijuana, one of the few treatments that can help save these children.

forgiveness

With a Chapstick in my hand I scrawled the words YOU SUCK on the upstairs bathroom mirror, then stepped back to admire my work. In its reflection I flossed and brushed, chuckling about my response to what had just happened.

It’d been a silly incident, a prank that had been played on me one-too-many times and which had lost any humor it might’ve once held partly because I was too goddamn tired to endure it. In front of our friend Charlie, who is no stranger to our marital banter, I rebuked my husband, asked him to please keep the music down, once and for all, then excused myself and went up to sleep in the room right above the stereo.

Lying in bed I could still hear their voices, though thankfully not the music, which had, as I had hoped, been kept at a reasonable level for my benefit. Chronically sleep-deprived from year upon year of multiple nightly wakings to check on Calvin who is rustling or crying or uncovered or having a seizure, I had no problem falling right to sleep.

A couple of hours later Michael crawled into bed and scooted up next to me. “You suck, too,” he told me in a low voice not quite a whisper. “I know,” I replied, and I heard his breathing slow then deepen, felt his warm legs next to mine, heard the hum of the baby monitor by my head then drifted—again—off to sleep, with the satisfying knowledge that, as quick, relatively painless and easy as usual, all had been forgiven.

readers write

When the nights are long and the days cold and cutting to the bone, I turn to the loving, sustaining words of my readers, some of who are strangers, but all of them friends:

The difference between the first journey before sunrise and the one you are on now, is that it was a shared experience to which we could all relate ... now we can only see through your eyes and feel from the depths of your heart and try to love you through it from a distance! Know that many of us are swimming along beside you each day, hoping to keep you afloat! XO 

—Betsy

I feel a deep, almost painful love for you and for Calvin. My insides wring out every time I read your writing and experience your conviction and strength. I feel it. We all feel it. And with the strength of that compassion and the collective outcry of empathy, which pours out of your words, I truly believe you can move mountains. What I have to offer isn't much, I have a brain that thinks about the meaning of things. I think about what it really means to be disabled. I think a lot about the relationships in our lives and what love makes us capable of. I think about what it means to be a parent. I think about death and grief and love. I think a lot about Calvin. I would be honored to correspond with you more. I'd love to join you on your journey, in whatever way that seems right. Please feel free to contact me. If not be assured that I am here, listening. 

—Kaila-Ruth

My background is in modern dance, and there is a technique codified by Doris Humphrey called "fall and recovery" - the idea of opposing forces of contraction and release, mixed in with the natural rhythm of the breath. I see Hailey recover from a seizure fall - with no tears, maybe no understanding of what has even happened, and I am awed by her strength and resilience. I sadly think sometimes it's better that she doesn't know. At 14 she is the strongest girl, and soon to be woman, that I know. I hope you and I keep recovering as we go through our own falls. I read your recent post about the bitter pill and all I can say is - I understand and I'm with you.

—Amy

Yesterday at the end of the movie when your phone rang and you sprang from a boulder like a Momma lion (to quote Joni Mitchell) I realized again how close disaster lives to you, that any phone call, or some little bit of unusual behavior from Calvin and the dangerous dark specter of epilepsy is right there looming over you. But you are fearless and I am full of hope that the right tincture is going to become available soon and it's going to help. xoxo
 

—Lauren 

I don't have a special needs child, so I mean this in the very best way possible, but reading about your troubles makes me grateful for mine. Granted, I don't like my own troubles either, but yours put mine into perspective. Some days, I don't feel like it, but because of you, I take another deep breath, and continue to put one foot in front of the other. 

—Anonymous

I've learned to never get in the way of a mad mother. Go for it full throttle and may the Force be with you all. My prayers and best wishes for you to get some sound answers to your questions.  

—Ray

You ARE surrounded by those who love you, and there are many out there who have traveled the same path for years longer, who know exactly what you're feeling, have shared your shoes. Sending you love and comfort and continued strength and courage. 

—Elizabeth

fear, dread and loathing

My son’s epilepsy has changed me, made me worrisome and fearful. In many ways it has shrunken me like a wool sweater in boiling water, shriveled my nerves into a tangled, crumpled mass of fibers. I sense that fear and dread in my posture, feel my shoulders cinch up around my neck as if I were pressing into a gale-force wind. I feel my nerves bunch and knot around my bones. There’s a constant low drone in my head, my blood, like the nearly imperceptible but real buzz of a solitary bulb glaring in its socket.

I don’t remember being afraid much as a child, only at night on lonely walks down our unlit gravel lane headed home from Monica’s house. Fear quickened my steps and, as adrenaline fed fear, I’d launch into a full-out sprint round the bend in my driveway as if demons were swiping at my heels.

But I wasn’t afraid of scary movies, Hell or the end of the world. I wasn't afraid to sing solo in front of the entire school, wasn’t afraid to talk to strangers, go to the dentist, catch snakes and frogs, break up with boys, jump off of cliffs, swim past the breakers, sneak out of the house, drive ninety miles an hour, admit fault, endure pain, drop out of college, cold call, tell the truth, ask for help, backpack alone, explore foreign countries, converse with people whose language I didn’t speak, talk to the homeless, reveal my weaknesses, trust strangers, challenge authority, quit jobs, face adversity, eat food I didn't recognize, go to parties alone, move to new places or make new friends. I wasn’t afraid of any of it.

But epilepsy scares me. I’m in constant dread of my son’s next loathsome seizure, looking over my shoulder as if half expecting a lurking thug to whack me over the head. I jump at loud noises, cringe at Calvin’s odd behavior, flounder in angst and thrash in the obscure waters of antiepileptic drugs and their side effects that render my son a zombie-lunatic much of the time.

Because of epilepsy I never truly relax, and the fear, dread and loathing has, in some ways, become etched into my being, perhaps changed me forever. Though regrettable, I imagine this kind of fear and dread to be no less than a thousand-fold for the parents and families of the Sandy Hook Elementary School victims or for the parents of kids with catastrophic epilepsies such as Dravet syndrome. And so I make my best effort to put things into perspective and to understand that my former state of total calm is little to have given up, at least for now; I still have my child and my child still has me, and for that I am eternally grateful, even if it's sometimes scary.

Originally published last December.

photo by Michael Kolster

anatomy of a greeting

Though many in this country might wish it to be so, not everyone celebrates the birth of the Baby Jesus. Recently, I’ve been racking my brain trying to figure out exactly why it troubles me so that some who celebrate Christmas complain about the use of the greeting, Happy Holidays, a noble, big-hearted phrase that has been in use for as long as I can remember and therefore is at least as old as bell-bottom jeans, Barbie dolls and Hot Wheels and probably dates back to Dickens' time. Instead of choosing to greet people in the holiday spirit, these naysayers, as I mentioned in a previous post, vow to slight non-Christians by Merry Christmasing "the crap" out of them. Doesn't sound to me like something Jesus would do.

Standing under the fingers of a hot shower, I contemplate. I do some of my best contemplating here, running my hands through my hair, filling my mouth with water, rocking back and forth under its stream warming my chilled bones. Why, why, why am I so vexed?

My thoughts take me to a time when I lived in San Francisco, having moved there from the mostly white, mostly Christian Seattle area. In San Francisco I found myself surrounded by émigrés from all over the country, the world. I lived happily amongst poor people and rich people, black people and Hispanics, career people and homeless, gay people and straights. The ad campaigns and billboards from my industry, the ones from Levi’s, The Gap and Old Navy, all read, Happy Holidays! The message, albeit with the motive of increasing sales, was inclusive, far-reaching, open-minded, compassionate and worldly. Decembers, the city was abustle with holiday cheer. Store windows, city streets and squares gleamed with Christmas trees and glittered snowflakes, twinkling Stars of David and menorahs, the vibrant black, green and red of Kwanzaa, beautiful nativity scenes, Yule logs and Santas. The holiday spirit was alive on everyone's face.

Here in Maine, an uber-white, Christian state, I am fortunate enough to live in a community near a college, both of which embrace diversity. Many of my friends, not unlike me, are either pantheistic, agnostic or atheistic. I know families with one Jewish parent, the other Christian. I’ve known folks who observe Kwanzaa, and who, like me, prefer celebrating the solstice and the promise of longer days. Perhaps some of my friends are Muslim, Buddhist or Hindu; I don’t always know and I try to avoid making assumptions. More so, to assume that our nation’s default position is—or should be—Christian is, to me, thoughtless, self-righteous and ignores the lengths to which this country has gone to preserve religious freedom.

As water runs in rivulets into the basin I also consider that these particular Christmas zealots, had they been born in another place or time, would likely have found themselves to be Hindu or Muslim or Buddhist or Heathen. Further, I consider my boy Calvin and his utter incapacity to contemplate the existence of any God much less the meaning of Christmas, its religious or secular bent. To some extent, the fact that Calvin is non-verbal and cannot understand abstractions or the meaning of particular events such as birthdays and holidays, while we ourselves wish to partake in some of the pomp and circumstance of the festive season, we treat these winter days as if they were another Thanksgiving, mostly void of presents and dogma yet full of harmony, love, generosity, home-cooked meals, Michael's bourbon eggnog and humble gratefulness for it all. We’ve been lucky enough to be included in friends’ celebrations of Hanukkah, in Christmas tree trimmings, in Black gospel nativity concerts and holiday chorals, in Christmas Eve parties and annual Christmas dinners and in gatherings for the solstice. At each I learn something I hadn’t known before, about what others cherish and put their faith in. In each I see smiles beaming from the faces of the young and the old, the black and the white, the Jewish, the Christian and the atheist. All are beautiful. All are to be celebrated, respected and honored, not scorned or held in contempt by some hateful sound bite, which I now understand, after a long hot shower, is the sanctimonious behavior at the root of what irks me so.

photo by Michael Kolster

marijuana and the ailing child

Written by my friend Mary Pols and published in today's Maine Sunday Telegram

On a dark night in November, Meagan Patrick drove from her home in Acton with her husband, Ken, and their two children to a medicinal marijuana dispensary in Portland. Ken parked and went in, while Meagan and the kids waited in the car. “It was literally in a back alley,” said Meagan, a 31-year-old third-grade teacher.

Just a few months ago, this errand – shopping for medicinal marijuana to treat her baby daughter’s epilepsy – would have been unfathomable.

Ken came out empty-handed. There was plenty of medicinal marijuana available but, as they had suspected, not the kind they were seeking.

So this Monday, Meagan plans to board a flight to Colorado with 13-month-old Addelyn – “Addy” – to begin the process of becoming a resident there, far from family, far from Ken’s job and their woodsy home in southwestern Maine but close to what she believes may be her best hope for her child’s future.

About 100 families nationwide have already relocated to Colorado in order to obtain a strain of medical marijuana known as “Charlotte’s Web” that has been shown to be effective in treating children with epilepsy. Originally called “Hippie’s Disappointment” by its growers because of what it lacked in traditional potency, namely the THC (tetrahydrocannabinol) that gives users a psychoactive high, this strain of high CBD (cannabidiol) marijuana was renamed for a little girl named Charlotte Figi. Researchers at the University of Reading in England found evidence that cannabidiol, one of many components in the marijuana plant, can radically reduce the number of seizures in epilepsy patients; it reacts with receptors within the body and works as an anticonvulsant. That was borne out by Charlotte Figi’s case; at age 4 she was having 300 grand mal seizures a week and had run out of pharmaceutical options. In her first week on this cannabis-derived medicine she had just one seizure. Now 6, she is 99 percent seizure-free.

In Maine, medical marijuana is legal, even for minors, provided they pass a certification process with the Department of Health and Human Services’ licensing board. But the nearly two dozen Maine families who want to try it have run into numerous roadblocks.

The first is supply. Charlotte’s Web, developed by Colorado grower Josh Stanley and his five brothers – widely referred to as the Stanley brothers – is not technically available in Maine, as the Patricks found. But Charlotte’s Web rumors fly through this network of parents, many of whom originally connected on a private Facebook group called Maine Epilepsy Parents United.

Some say there’s something just like it, or close enough, or that a Maine grower might be secretly working from a clone of the Stanleys’ plants. Others whisper that someone in California might be willing to mail another high CBD-strain to Maine. Or that maybe the high-CBD strain isn’t needed at all, that maybe the plant in its raw form could yield a medicine just as helpful. In this world where mothers ruefully count up the number of pharmaceutical options that haven’t worked on their kids and dread the possible side effects of whatever comes next, nothing seems certain but the desire to give a natural product a try.

The second major obstacle is legality. It’s not as simple as going to Colorado to pick up some clones of the Stanleys’ plants and bring them back to grow in Maine.

Under federal law, marijuana is still illegal and classified as a Schedule 1 drug without any known medical benefits and with potential for addiction and abuse; it’s in the same category as heroin and LSD. Anyone who imports it across state lines risks being charged with drug trafficking.

Even if a Maine family can obtain something similar – growers in Maine are working on high-CBD, low-THC strains right now – many of these children regularly cross state lines for doctor’s appointments at Boston Children’s Hospital or Massachusetts General. Their medicine has to go with them. As Joan Smyrski of Maine’s Division of Licensing and Regulatory Services for medicinal marijuana points out, that’s a lawbreaker.

“It’s drug trafficking,” she said. Read More ...

photo by John Ewing/Staff Photographer