day nine

In blue latex gloves, my hands grind dry cannabis bud into a stainless steel bowl. Calvin is upstairs with the nurse taking his second bath of the day. During this ridiculously snowy February break, time expands into monotonous swaths. I imagine well-to-do families with their healthy kids going downhill skiing, or perhaps stretching out on Bahamian beaches, while our most exciting outings are to the grocer, the hardware store and the coffee shop in the next town over.

I see the reflection of my hands in the sides of the bowl, the pile of oregano-green flakes forming a mound in its center soon to become an amber oil elixir for my son. From the top of the stairs the nurse calls my name and, of course, I know why. It's day nine and he’s having a seizure in the bath—again. As I jump up the stairs I wonder if—hope that—it might be his last.

She’s got his limp body slung in her arms as she lugs him awkwardly to our bed. His face is mottled, eyes vacant, and his fingertips, usually tinged blueish during seizures, look grey and dead. This one is more convulsive than recent seizures, and I call to him, call to him to come back to me.

A few minutes later he whimpers and I see the life flow back into his eyes, if only a little. He tries to suck his thumb but doesn’t have the strength. He whimpers some more and I stroke his wet head and kiss his neck. My throat begins to thicken wondering if my child will ever break free of this torment, wonder if he knows that I am sitting beside him on the edge of a firm bed in the middle of a winter sunset that others might be viewing from a mountaintop or a beach.


  1. there must be a collective sob from all of us readers as we see Calvin and you today....then I feel sure there is a collective quickening of hope as we read you are making the tincture......for these are the responses I feel...You have created a community that is all pulling for you, Christy.

  2. That photo takes my breath away. I have nothing to say, but I will continue to abide with you.

  3. My heart is with you through your journey, but most of all with that sweet little boy that has left a heartfelt lasting impression on my life. Wish I could be there to give Calvin a great big hug and let him feel that we are all behind him and supporting his journey. You are an inspiration Christy, the strongest soul I've ever experienced...till I get to see you again XOXO

  4. Hi Christy,

    I stumbled upon your site earlier this week while exploring the internet in search of hope and understanding for my own son's epilepsy journey.

    As I pen this, I try not to let my mind wander to that place it has habituated itself to… the place where Spencer will have a seizure on the bus, at a cross-walk, or in line at the bank as he valiantly insists on the pursuit of a 'normal' existence. I admire my man cub's courage and determination, yet my own heart skips a beat when the phone rings or there's a knock on the door. I clearly don't possess the kind of lion-heart my son demonstrates when he takes the enormous risk of simply stepping out the front door.

    We can't begin to number the times he's come to dazed and groggy consciousness in the back of an ambulance, strapped down and sometimes even pinned down by overly rough, if well-meaning paramedics. The number of times he's had to prove that he's not having a drug reaction, and that he's 'not a danger to himself or others'. Can't begin to number the times he's felt raped and psychologically battered by a system and a society that blindly cling to a Dark Ages understanding of this phenomenon.

    Knowing what he will endure if my husband and I don't arrive at the ER in time to intervene, I find myself contriving reasons to text him once… twice… as many times as I think he'll let me get away with, just to reassure myself that he's simply engaging in whatever activity other twenty-something young people engage in when they're out in the world, and NOT fighting for his dignity, his legal rights, or worse yet, his very life.

    Mine and my son's challenges are clearly very different from yours and Calvin's. I know I can't possibly understand the intricacies of your day to day struggle, but please know that there are those of us mothers out here (in my case in San Diego) who resonate with the emotional vibration of your mother's heart as you lovingly and courageously care for your precious child.

    We too are engaged in a battle to secure those very specific strains of the wonder herb that may change all of our realities. The sunny little corner of our own backyard may end up holding the key to a sane and truly livable life with as we continue to play the hand we were dealt.

    I wish you continued hope, strength, courage, and most of all… from one mother's battered heart to another… I wish you peace.


    Annie Dru