shout out

Tomorrow, Michael will make the scenic twenty-five mile drive to our local dispensary to pick up two ounces of fragrant cannabis flower. With it I’ll begin making my ninth batch of THCA oil and my third batch of high CBD oil to treat Calvin’s epilepsy. I'm reminded that I’m overdue in giving a shout out to some of the wonderful people who have helped make my endeavor possible, who have donated their time, money and energy into pioneering a new therapy, which appears responsible for having eliminated—for the past thirteen months and at least for now—Calvin’s daytime tonic-clonic seizures, while easing the gradual and painful withdrawal of a highly addictive benzodiazepine, clobazam, aka Onfi.

First, I’d like to thank all of the parents who blazed the trail before me in the endeavor to treat their children’s seizures with cannabis: Kristi Solmon, Susan Meehan, Jason David, Heather Barnes Jackson, Sarah Mac and Paige Figi, Charlotte’s mom who, as an impassioned advocate for medicinal cannabis, devoted much time from her busy schedule answering many of my questions about her daughter’s regimen, about Charlotte’s Web CBD oil, and about weaning off of Onfi.

I owe a debt of gratitude to good old Dave Mapes, founder of Epsilon Apothecaries, for fielding scores—if not hundreds—of questions during my preliminary research of cannabis therapy, for virtually holding my hand through the initially scary process of making THCA cannabis oil, and for continuing to help me troubleshoot when things seem to go awry.

Great thanks to the anonymous entity who brought high CBD cannabis flower to the state of Maine, for their courage, their enterprise, their optimism, their compassion and their resolve, and to the scores of other parents who have ventured into the promising frontier of THCA and THC when the media is myopically focused on CBD only.

Where would I be if not for Jenna Smale of Remedy Compassion Center in Auburn, Maine. Many hours of tireless conversation and probing lead us both to choosing an appropriate cannabis for making Calvin’s THCA oil and for helping to develop the right CBD oil. I'm forever grateful for her and her team’s dogged efforts to ensure a consistent, high quality, clean, safe, reliable and beautifully fragrant flower, and for their kindness and generosity which, from my perspective, seems boundless.

I'm so grateful for Clay Sulak at Tested Labs and Nick DesLauriers and Chris Hudalla from ProVerde Laboratories for for their professionalism, for frequently going out of their way for Calvin’s benefit, for helping me problem-solve, for testing my products in a timely manner, and for their immeasurable kindness and charity.

Many thanks to Dr. Dustin Sulak, founder of Integr8 Health, for fielding my email queries and for his knowledge and advocacy for this righteous cause.

My deep gratitude goes out to Calvin’s pediatrician, Deb Hagler, whose advocacy and concern has been unmatched, and to neurologist Peter Morrison for getting on the bandwagon early in the game when others wavered, paralyzed with fear and doubt—Calvin being the first patient for whom he recommend medical marijuana for treating epilepsy. Thanks to our esteemed Senator Angus King for backing us up after his initial and self-proclaimed skepticism of cannabis as medicine, and to my dear friend Elizabeth Aquino who writes so beautifully, wisely, irreverently and humorously in her blog, a moon worn as if it were a shell, about raising an adult child with chronic epilepsy, and for her fierce advocacy of medicinal cannabis.

I am immensely appreciative of Calvin's nurse Beth Nilsson, whose last day was a week ago, for her years of service and dedication, love, gentleness and calm and for going above and beyond the call of duty to investigate naturopathic treatments for Calvin's many conditions. We will miss you, Beth.

And while I'm at it, if it were not for our wonderful family and friends who shower us with love and laughter, gifts of food and flowers, bourbon and beer, good times, great conversation and hugs galore—you know who you are—I'd perhaps be withering on the vine or in some nuthouse besides the crazy one in which I live.

Thanks, finally, to my husband Michael for his unwavering love, support and patience, his sense of humor and ability to calm, for his sublime mastery of the lens in capturing scenes into which I can dive and lose myself for a spell, and for being a husband without whom I couldn't accomplish what I do.

rain, chalk and supernova

This rain is not enough to quench these parched lips, wash away the sorrow, ease the furrow in my brow. The thought of her gone—truly gone—haunts me with melancholic arcs, not so much for myself as for those who had to watch her struggle, then take her final breath.

Her place on the couch is hollow now, and I imagine her bed made smooth but without linens, slippers still tucked neatly beneath where her thin legs draped, their skin, like the rest of her, wrinkled like crepe.

A shell of a woman, she had held the sound of motherly seas in her voice, the way lapping waves mesmerize, hypnotize, and we clasped her diminishing form in ours like a burnished and beloved stone, put her in our pockets and carried her along.

Some ashes and a lock of white hair is all that will be left of the physical her, ashes that will look, sound, feel and taste no different than Dad’s. Like his, we’ll cast them back to earth and ocean to become something new.

I’ll still see her every day when I look into my son Calvin’s face. Hers is somewhere there; I catch fleeting glimpses. And when I do, I remember her great sacrifice, her many years swollen with child and laden with dirty cloth diapers for six, shopping and cooking and ironing and cleaning for eight, taking little to nothing for herself, no cup of coffee or glass of wine with a friend, no solitary stroll in the woods to escape.

This rain reminds me of when she’d cry in the shower; she told me it’s what she did to hide her despair. But it seemed she’d forgotten all that, the Alzheimer’s dissolving her memory and her bones into chalk, which if scrawled on a rainy sidewalk washes into one big galaxy of color, like some celestial body, or perhaps a glorious supernova outshining everything else.

Composite view of the Crab nebula, an iconic supernova remnant. www.jpl.nasa.gov

indigenous peoples day

In an instant, an image captures my attention and my imagination wanders back hundreds of years to the time of Columbus, when America’s indigenous people first began to be exploited by white colonizers, sickened by foreign disease, swindled, pilfered, raped and tortured, their families ripped apart, enslaved and slaughtered in a five-hundred year genocide of tens of millions meant to erase any memory of their culture.

Even today, our Native American brothers and sisters are oppressed, scorned, mocked and marginalized, their children unjustly snatched from them and given to white folk to raise, their tribal names and images grotesquely exploited in the interest of greed and the sake of white man's sport.

Today, rather than commemorate another hateful, greedy powermonger who laid waste to a kind and peaceful people, I choose to honor our Indigenous for their beauty, their wisdom, their spirt, their courage, their service and, thankfully, their tenacity.

Photographer unknown

consolations

I wish I could be there to give you a very big hug.
—James

It is easy to imagine the many layers of melancholy. I hope you find comfort in the tiniest things.
—Marianne

I sometimes feel that the way we parent is a mix of a lot of things, including both what we thought our parents got right, and what left room for improvement. If that is true, I know that your Mom saw the very best of herself in you, and the great Mom that you are to her grandson.
—Charlie

I'm so sorry for your loss. Thanks for allowing the rest of us to share in your journey—you shared in your mom's, we share in yours, and the cosmos of swirling spirits and glittery bangs touches us all.
May your happy memories of your mom buoy you in the days and weeks ahead.
—Kristi

my mother died 2 years ago and a light went out of her children's worlds that day
that next may on my brother's birthday and mother's day my niece gave birth to a baby girl named marian after my mother
and it is quite clear to all of us that my mother's spirit resides in this child without doubt
and life goes on . . . 
—Mimi

Just remember that, even long after the pain of the separation is gone, the beautiful and happy memories will still be there and remain with you forever.
—Stefano

The only perspective I can offer, having lost my mom three years ago this December, is that many Moms Never Leave.  The touches and hugs, the smiles, the laugh, the smells, the soothing sound of a voice talking, humming, whispering ... I experience those things all the time. I miss her physical presence but that really was only a fraction of her being.

And I do believe there is a very nifty group of stars out there in the cosmos ‘living’ it up. And we are lucky enough to get to wish on them and feel all that energy and brightness and promise they add to the night sky. I hope this can provide an antidote for your grief—it is just never easy to lose your mom.
—Catherine

Am very sorry for the loss of your mom—and thankful to have been able to read your warm and thoughtful posts about her over the years.
—Steven

A bit of grace comes to us all when we can see the perfection of another imperfect being.  Loss and love are so connected in this world.  I’ll cherish the thought of your mom as an angel up.
—Madeleine

Stories of the Black Ware Seed Jar

I have been through fire.
My form is fixed,
smoke-dark,
patterns of wing,
beak, thunder, and eye,
the storm of birds
chasing each other,
energies of life.
My small mouth
is starred,
cool and dry,
remembering
seeds
of potential.
Burnished
with stone,
I recall patience
through winter,
through wind,
through the rains
that fill the arroyos.
I absorb, hold
what stirs, rattles
like prayers,
like snakes,
awaiting release until
they pour my gifts
into the field again,
what you imagine—
where I began,
seed after seed,
fire becoming
field,
blossom and grain
and all of the voices
therein.

—Carter McKenzie

Photo by Stacey Sampson

Harriette May Shake

I suppose the easiest way to begin is by saying that my mom died Saturday night—somewhat unexpectedly and yet not—in my sister Caron’s and my brother Matt’s embrace. Just a week earlier, she'd taken a fall and had broken her femoral neck—something I doubt she’d have done except for Alzheimer’s and its decade’s decay of her mind and body. In a San Diego hospital she underwent emergency surgery to replace the ball of her hip. The operation went well, so she was transferred to a skilled-nursing facility for rehab, but she developed pneumonia. It was touch and go back in the ICU, her vitals fluctuating wildly, while my brother Matt lovingly called to inform me of any changes in her state.

Like she'd done so many times before, we thought maybe she’d dodge this bullet, thinking that perhaps her fighting spirit and sheer zest for life would pull her through. But in the end it was just too much for her to bear and so we let her go. Mom was just shy of eighty-six.

My sister crafted a beautiful note to family and friends. In it she wrote:

As all of you no doubt know my Mom was such an exceptional and special person. She was kind, funny, beautiful, smart, curious, adventuresome, and sweet beyond compare.

My Mom was a tough and strong woman all through her life and particularly late in life living with Alzheimer's and fighting to stay strong throughout.  

Caron finished by saying:

At this time I don't know what the next steps are regarding my Mom, but I would like her to be remembered for all her inspiring attributes and let you know that after death she did one last commendable act, she donated her brain to medical research for Alzheimer's in hopes of finding a cure.

My sister-in-law, Matt’s wife Stacey, posted a poem she wrote on Facebook, along with a gorgeous photo of a cloud-laden San Diego harbor sky opening up to a spray of sunbeams:

She's in those clouds somewhere
I know
I heard them say, "Angel up"
when she had taken her last breath
no longer tethered to this earth
nor gravity's captive
"Angel up" I heard them say
She is now the moon, the constellations
and these clouds
Angel up.

Several times throughout her life, my mother told me of her desire to one day have a Viking funeral, to be set out to sea on a flaming boat, and to have this poem read. I hope I can be there when she finally sets sail:

Sunset and evening star,
  And one clear call for me!
And may there be no moaning of the bar,
  When I put out to sea,

But such a tide as moving seems asleep,
    Too full for sound and foam,
When that which drew from out the boundless deep
    Turns again home.

Twilight and evening bell,
And after that the dark!
And may there be no sadness of farewell,
    When I embark;

For tho' from out our bourne of Time and Place
    The flood may bear me far,
I hope to see my Pilot face to face
    When I have crost the bar.

—Alfred Lord Tennyson

I am no religious person, not one who believes in the God of scripture. But I think of myself as spiritual. And so, I like to imagine my mom, and my dad who died nearly twenty years ago, as swirling around in the cosmos as stars or moons or comets, meeting no resistance in their space, just gliding along and perhaps colliding with each other in one big beautiful, glittery bang. No pain. No fear. No worry. No constraints.

Harriette May Shake, November 6, 1929 - October 3, 2015

love note from a fourth grader

Below is one of the many handmade cards sent home to me from Mr. Dwyer's fourth grade class, which I recently visited to talk to about Calvin and epilepsy. The love and compassion contained in the cards moved me to tears.

my cbd batch #2

Purdy.