pioneering women

Just before dawn as I slept in my boy’s embrace after an earlier grand mal, I dreamt of traffic jams, topless cars and failing brakes, of old flames neglecting my gaze and of girlfriends lost, of trolling icy bays of black and white and gray. The sky pressed down upon me, my loneliness naked and plain, and when I peered into an inky sea, an angry whale met my eye and set to fling me from my ship.

Perhaps this dream was a metaphor for life these past twelve years, especially since Calvin’s seizures first defined our world: their tendency to impede our every move, their habit to gather speed like runaway trains, epilepsy’s effect on our friendships, its nature to estrange, and the stress and dread of looming fits which shroud our every night and day.

Late last week I read a Facebook post from my friend Paige Figi, mother of young twin girls, Charlotte and Chase, the former famed for Charlotte’s Web, the cannabis oil that saved the seizure-ridden girl. Paige wrote:

Twins ... sigh. They share so much. Too much. Chase may have been named because she followed Charlotte out at birth, but she has absolutely been the leader, the caretaker, in charge. With her huge heart, she nurtured her sister through nine devastating years of seizures and all Dravet Syndrome brought to our lives.

Yesterday Chase had a seizure.

When I read her words I felt myself sinking into a murk, as if a huge stone were tethered to my feet. I pondered the unfortunate news.
 
What might this mean for Chase? Will she have more seizures or just the one? What would that mean for Charlotte? How will their family endure?

Then I thought of Paige. Some might call her Warrior, or Dragon Mom. I call her Pioneer. In Colorado several years ago, she was fighting to save her daughter's life from Dravet syndrome when, after Charlotte failed every available anticonvulsant drug and treatment, neurologists washed their hands and advised Paige to take her daughter home to die. Paige didn’t heed their call because she's fearless. Instead, she followed her gut, used her brains, checked her caution at the door and turned to cannabis, an herb that only one other American parent had openly given to his seizing child. Paige put herself on the front lines of using cannabis as medicine when the world was telling her, no.

Paige was instrumental in helping me blaze my own trail which, too, was on the cannabis-for-epilepsy frontier. She counseled me about benzodiazepine withdrawal (our children were on the same one), she directed me toward cannabis strains that might help fight my son's seizures at a time when few others were delving into the unknown. She has fought long and hard against a rigged system that maligns cannabis and would deny it as medicine for our kids, some of who are dying.

Shortly after my unsettling dream, I spoke with my friend Lauren and told her of Calvin's early morning grand mal, of how, in its aftermath, I'd given him a dose of CBD cannabis oil to see if it might stay a second seizure, and how it seemed to have done the job. I mentioned that I'd also given him his benzodiazepine two-and-a-half hours early followed by an extra Keppra upon waking for the day; All of these measures meant to derail any further seizures seemed successful at keeping them at bay.

Lauren praised my dogged efforts to eliminate as many of Calvin's seizures as I can. She told me she imagined me as the sharpshooter, Annie Oakley, conjuring up for me a western gal in leather boots and cowboy hat shredding her targets shot by shot. I remembered how I often describe epilepsy as a moving target, and so the image of a cowgirl in suede fringe, and seeing as how I'm a Westerner with a love of shit-kicking boots, seemed apt. I looked up Annie Oakley and found this description:

Her feats of marksmanship were truly incredible. At 30 paces she could split a playing card held edge-on, she hit dimes tossed into the air, she shot cigarettes from her husband's lips, and, a playing card being thrown into the air, she riddled it before it touched the ground.

And so, in honor of Paige, and all the other formidable mothers spearheading cannabis as medicine for their suffering children, I want to send the powerful mental image, and all the mojo that goes with it, of the Pioneer and her weapons: one syringe of cannabis oil at a time, blowing epilepsy to smithereens.

simply mom

She gets littler and littler each time I see her. In so much as it’s her frame shrinking over time, it is also her being, her mind.

Scott and I approach Mom on the grass and swoop in for a group hug. Her downy, white head buries into my chest, her longish arms wrapping around our waists. Though she might not remember our names she seems to know she’s being cradled by her adult children and I’m sure she’d embrace us forever if she could.

We take Mom to the San Diego YMCA to watch Scott swim. In the shade I feed mom pieces of a Subway sandwich and some blueberries, dolling them out one by one so she doesn’t eat too fast and upset her digestion. Just like Calvin, I think. The skin around her watery eyes is red and irritated from rubbing or allergies or both. After lunch I set her down on a lounge chair, thinking the slap-slapping of swimmers arms will help her to rest. I offer her a stick of gum that she attempts to put in her mouth, paper and all.

For a good part of an hour we sit there on the deck. I’m taken back to my days as a child when I spent nearly every day at the pool. Some things don’t change. There’s the lifeguard wearing red and white sweats sitting behind sunglasses, under a visor and atop a tall sturdy white wooden chair. A man on the deck teaches swimming lessons to a couple of grade school kids. One of them, the boy, swims like a spider the way so many of my swimmers did when I was a coach. He’s telling the boy, who is about Calvin’s size, though younger, to reach with his arms and I find myself smiling. Then I find myself crying. I want to be transported to a place and time where I’m teaching my kid how to swim, telling him to keep his chin down, kick his feet and keep his elbows up. I long to see his little scrawny body move down the lane inch by inch until he reaches the deep end where I shower him with praise.

I see Scott in the next lane over, his own long arms tanned and toned from hours spent in the pool every week. He moves through the water like a serpent and I wonder if my stroke looks at all like his, and I am aware that my own boy will never grow into the same kind of man that my brother is, that his father is.

After the swim, at my sister’s condo, we lay Mom down for a nap. She falls asleep hard, then jitters and shakes and I wonder what is going on in her brain. Thirty minutes later she wakes to go to the bathroom. I take her in to help her and as she’s washing her hands we look into the mirror at each other. With my arm around her I tell her that I love her. Looking into the reflection of my eyes and smiling, she replies, “I love you. Really. No kidding.”

photo by Scott Shake

heartache, hardship and joy

Ethan bounces a basketball in the driveway. Inside, Ben holds Abby on a couch the same color as her coat. She licks his face. As dusk begins to fade, mosquitoes hover while Maddie and Zack are out on the boat with Michael. The faint hum of the motor skips across the bay. I sit on a padded chrome chair in the middle of the dock with my sister-in-law, Betsy, who straddles a dry-docked kayak. Her husband Sean takes the other chair while Rudy noisily paces around dragging his paws across the corrugated aluminum deck. It is a perfect moment. The nip in the air and the chill of white wine in glasses as big as our smiles gives me shivers. Dinner is done and Calvin is behind doors fast asleep in the vacation rental, which sits on a bluff just feet above Quahog Bay. Gma and Gpa pull up chairs on the upper deck to spy the red light off the butt of the boat as it drifts into the dock. David and Lisa join just as an osprey flies overhead.

We had taken our young nephews out on the boat earlier, Calvin too. It was my first ride of the season and two summers since I’d last had Calvin on my lap in the boat. He squirmed and screamed with some sort of excitement, perhaps irritability, perhaps indigestion. As he did so, I held him tightly so that neither of us got hurt. Ethan took a hesitant try at steering the boat while Michael shot a few pics of us from the bow.

“This is the best family reunion ever,” Ethan had told his grandmother, and continued, “No offense, Grandma, but this is better than the one in Amelia,” and he went on to explain—with a no-offense lead-in each time—that he preferred that the reunion was an airplane ride away from home and was near Calvin’s house. No offense was taken.

“Calvin is my most favorite nine-year-old,” Ben chirped a few times, “I can’t believe he’s going to be ten next year,” and I recalled how Ben was ten the last time he visited us with his Dad, and in my mind I compared the two: the boy with Autism versus the boy with epilepsy who is missing part of his brain. His mother Lisa, my other sister-in-law, showed me the handful of pills she was about to give each of her sons and said lovingly, “See, you’re not alone.” I began to say how glad I was not to be alone, but then retracted that gladness replacing it with regret that either of us—anyone—must endure the hardship and heartache of children like ours, children that bring us so much despair yet so much joy.

photo by Michael Kolster

unforgettable

She says, with tears in her eyes, that he is unforgettable. I can tell that she loves Calvin. She tells me that he reminds her of our mother, something that I’ve thought before numerous times, although he’s got his father’s and grandfather’s clear blue eyes.

She's here to help and to learn and perhaps one day to watch our boy so Michael and I can get away for a night or two.

Her patience is long, longer than mine of late, enduring my grumpy cussing and sharp words, enduring Calvin’s hair pulling and occasional shrieking, his stubborn refusal to walk where we want him to go. In a swift move to avoid a catastrophic shit storm she grabs a wet washcloth and scoops up a handful of loose stool oozing out the top of his diaper and onto his pants, shirt and highchair and onto my knee. “Jeez, Caron,” I say, most impressed with her speed, finesse of the cloth and utter lack of repulsion.

Later, she gets on the phone with Mom, who lives three thousand miles away.

“I need you,” Mom says to her, and asks when she’ll be visiting.
“In a couple of weeks,” Caron replies, giving Mom her standard answer of hope, the endorphins of which will last in Mom’s brain for hours even as the memory of those same words fades.
“Goodie, goodie,” Mom pipes in a gravelly voice.

She hands the phone to me and I joke and quip to make Mom laugh while Caron plays with Calvin in the jumper. I ask Mom how the weather is and she does her best to tell me, “The windows ... the things are up ... and I can see there’s white up there.” I ask her if it is cloudy and she says, brightly, something like, “That’s exactly ... you know what it is,” and it’s clear that she knows and appreciates that I get what she is trying to say.

We say I love yous a couple of times over and as I hang up the phone I wonder, as I often do, if it might be the last time I’ll hear her tender voice.

Calvin is giggling in the jumper, wantonly pulling Caron’s hair. Before the moment is lost I grab my camera and snap a few, the results of which somehow remind me of my childhood days with Mom. And then I see a glimpse of my boy's smile and forget about my frustrations and lack of patience and think, like she, how truly unforgettable he is.

Calvin and Caron