scary stuff

Some scary stuff Halloweens past: general anesthesia, circumcisions, EEGs, seizures, more EEGs, status epilepticus, emergency rooms, pediatric intensive care units, intubations, malaise.

But with any luck, this year we will be taking Calvin trick-or-treating for the very first time. We may only make it down to Woody's house and back, but we're going to give it a try.

Calvin has no concept of what Halloween is—doesn't seem capable of grasping abstractions—so it will be more of a marker for me and Michael, a reminder that, at some point in recent years, he'd never have walked past the end of our driveway much less down the block.

In a few hours, just before twilight and if all goes well, we'll be crossing our fingers and knocking on Woody's door.

i have a voice

It’s days like yesterday—dry, bitter cold ones with overcast skies but no rain, days where my sleep deprivation, worry and dread get the best of me—which get me thinking about the world, how hard life can be, how much pain people endure, how my son Calvin doesn't really have a voice to tell us if he is suffering, and how much better things would be if he could.

I was reminded of a debate I had several months ago on Facebook, which I described in my blog post, black sheep, scapegoats and wild white horses. The subject was Sandra Bland, the black woman who was found hanged in her jail cell after having been brutalized then arrested by a white police officer who had pulled her over, ostensibly for failing to use her turn signal. I cited racism, asserting that Ms. Bland was treated barbarically because of the color of her skin. A handful of whites—some friends of mine, others not—in subsequent comments insisted Ms. Bland’s handling was purely because she had not complied with the officer, who was later removed from his beat for having violated protocol. I respectfully, yet emphatically, countered their arguments—which included personal narratives of incidents with cops which had turned out rosy—by underscoring what I felt was, at least in part, likely at play: their white privilege. Still, they stood their ground, denying any notion that race had played even the slightest role in Sandra Bland’s demise.

Really, not a day goes by that I don’t wince, that my heart doesn’t shudder, at the gross injustices against African Americans which occur at a sickening rate in this country—in day care centers, preschools, grade schools, high schools, colleges, neighborhoods, parks, streets, homes, employers, shops, juvenile detention centers, prisons and churches—in epidemic proportions.

Yesterday morning, I watched a video of a sixteen-year-old South Carolina girl being grabbed by the throat and yanked from her school desk by a Richmond County deputy (why do we need police response for a girl using her cell phone in class?) tossed backwards in her seat, dragged out of the chair, flung across the room, then cuffed.

What parent wouldn’t be enraged if their daughter had been similarly violated? In fact, it is nearly impossible for me to imagine a cop using that kind of force if the student were white.

The girl was silent. The girl was calm. The girl was non-violent and unarmed. A classmate, another black girl, took a stand, recording the brutality on her phone and verbally challenging the abuse. Her reward: arrest.

Like Sandra Bland, some white people were quick to blame the student's treatment on her noncompliance, as if her obstinance warranted this kind of physical abuse.

The power that white law enforcement wields, the sweeping racism inherent in our policies, the prejudice some white people employ—and the privilege they steadfastly deny—are longstanding and formidable and, like in one of the videos, too many of us just sit back and watch injustice fly. And as we sit at our comfortable white distance, and stand our ground and ignore the facts and divert the conversation and rewrite our history and blame the victim and milk the scapegoat and declare our colorblindness and deny our role, we are nothing but complicit.

I think I may have lost a longtime friend as a result of the Sandra Bland Facebook clash and/or my blog post about it, someone who, it appears, may have taken offense with my argument, though I'd done my best to remain steady, credible and calm and took care to not make it personal.

And so, one might ask, was it worth it? Why bother? I bother because I am human, because that young woman pulled over or that child wildly plucked from her chair, if not for the accident of birth, could have been mine. I bother because of Calvin who, like so many others, does not have a voice. But I have a voice, and in the face of inequality, wrongdoing, hate, racism, classism, bigotry, violence, greed, contempt, abuse of power or ignorance of privilege, I'll keep trying to use it as best I can.

Still from a video of a South Carolina police officer assaulting a black female student

everything doesn't happen for a reason

Written by Tim Lawrence and lovingly shared with me by a friend.

I emerge from this conversation dumbfounded. I've seen this a million times before, but it still gets me every time.

I’m listening to a man tell a story. A woman he knows was in a devastating car accident; her life shattered in an instant. She now lives in a state of near-permanent pain; a paraplegic; many of her hopes stolen.

He tells of how she had been a mess before the accident, but that the tragedy had engendered positive changes in her life. That she was, as a result of this devastation, living a wonderful life.

And then he utters the words. The words that are responsible for nothing less than emotional, spiritual and psychological violence:

Everything happens for a reason. That this was something that had to happen in order for her to grow.

That's the kind of bullshit that destroys lives. And it is categorically untrue.

It is amazing to me—after all these years working with people in pain—that so many of these myths persist. The myths that are nothing more than platitudes cloaked as sophistication. The myths that preclude us from doing the one and only thing we must do when our lives are turned upside down: grieve.

You know exactly what I'm talking about. You've heard these countless times. You've probably even uttered them a few times yourself. And every single one of them needs to be annihilated.

Let me be crystal clear: if you've faced a tragedy and someone tells you in any way, shape or form that your tragedy was was meant to be, that it happened for a reason, that it will make you a better person, or that taking responsibility for it will fix it, you have every right to remove them from your life.

Grief is brutally painful. Grief does not only occur when someone dies. When relationships fall apart, you grieve. When opportunities are shattered, you grieve. When dreams die, you grieve. When illnesses wreck you, you grieve.

So I’m going to repeat a few words I’ve uttered countless times; words so powerful and honest they tear at the hubris of every jackass who participates in the debasing of the grieving:

Some things in life cannot be fixed. They can only be carried. 

These words come from my dear friend Megan Devine, one of the only writers in the field of loss and trauma I endorse. These words are so poignant because they aim right at the pathetic platitudes our culture has come to embody on a increasingly hopeless level. Losing a child cannot be fixed. Being diagnosed with a debilitating illness cannot be fixed. Facing the betrayal of your closest confidante cannot be fixed.

They can only be carried.

I hate to break it to you, but although devastation can lead to growth, it often doesn't. The reality is that it usually destroys lives. And the real calamity is that this happens precisely because we've replaced grieving with advice. With platitudes. With our absence.

I now live an extraordinary life. I've been deeply blessed by the opportunities I've had and the radically unconventional life I've built for myself. Yet even with that said, I'm hardly being facetious when I say that loss has not in and of itself made me a better person. In fact, in many ways it's hardened me.

While so much loss has made me acutely aware and empathetic of the pains of others, it has made me more insular and predisposed to hide. I have a more cynical view of human nature, and a greater impatience with those who are unfamiliar with what loss does to people.

Above all, I've been left with a pervasive survivor’s guilt that has haunted me all my life. This guilt is really the genesis of my hiding, self-sabotage and brokenness.

In short, my pain has never been eradicated, I've just learned to channel it into my work with others. I consider it a great privilege to work with others in pain, but to say that my losses somehow had to happen in order for my gifts to grow would be to trample on the memories of all those I lost too young; all those who suffered needlessly, and all those who faced the same trials I did early in life, but who did not make it.

I'm simply not going to do that. I'm not going to construct some delusional narrative fallacy for myself so that I can feel better about being alive. I'm not going to assume that God ordained me for life instead of all the others so that I could do what I do now. And I'm certainly not going to pretend that I've made it through simply because I was strong enough; that I became "successful" because I "took responsibility."

There’s a lot of “take responsibility” platitudes in the personal development space, and they are largely nonsense. People tell others to take responsibility when they don’t want to understand.

Because understanding is harder than posturing. Telling someone to “take responsibility” for their loss is a form of benevolent masturbation. It’s the inverse of inspirational porn: it’s sanctimonious porn.

Personal responsibility implies that there’s something to take responsibility for. You don’t take responsibility for being raped or losing your child. You take responsibility for how you choose to live in the wake of the horrors that confront you, but you don't choose whether you grieve. We're not that smart or powerful. When hell visits us, we don't get to escape grieving.

This is why all the platitudes and fixes and posturing are so dangerous: in unleashing them upon those we claim to love, we deny them the right to grieve.

In so doing, we deny them the right to be human. We steal a bit of their freedom precisely when they're standing at the intersection of their greatest fragility and despair.

No one—and I mean no one—has that authority. Though we claim it all the time.

The irony is that the only thing that even can be "responsible" amidst loss is grieving.

So if anyone tells you some form of get over it, move on, or rise above, let them go.

If anyone avoids you amidst loss, or pretends like it didn’t happen, or disappears from your life, let them go.

If anyone tells you that all is not lost, that it happened for a reason, that you’ll become better as a result of your grief, let them go.

Let me reiterate: all of those platitudes are bullshit. 

You are not responsible to those who try to shove them down your throat. You can let them go.

I’m not saying you should. That is up to you, and only up to you. But I want you to understand that you can.

I've grieved many times in my life. I've been overwhelmed with shame and self-hatred so strong it’s nearly killed me.

The ones who helped—the only ones who helped—were those who were there. And said nothing.

In that nothingness, they did everything.

I am here—I have lived—because they chose to love me. They loved me in their silence, in their willingness to suffer with me, alongside me, and through me. They loved me in their desire to be as uncomfortable, as destroyed, as I was, if only for a week, an hour, even just a few minutes.

Most people have no idea how utterly powerful this is.

Are there ways to find "healing" amidst devastation? Yes. Can one be "transformed" by the hell life thrusts upon them? Absolutely. But it does not happen if one is not permitted to grieve. Because grief itself is not an obstacle.

The obstacles come later. The choices as to how to live; how to carry what we have lost; how to weave a new mosaic for ourselves? Those come in the wake of grief. It cannot be any other way.

Grief is woven into the fabric of the human experience. If it is not permitted to occur, its absence pillages everything that remains: the fragile, vulnerable shell you might become in the face of catastrophe.

Yet our culture has treated grief as a problem to be solved, an illness to be healed, or both. In the process, we've done everything we can to avoid, ignore, or transform grief. As a result, when you're faced with tragedy you usually find that you're no longer surrounded by people, you're surrounded by platitudes.

What to Offer Instead

When a person is devastated by grief, the last thing they need is advice. Their world has been shattered. This means that the act of inviting someone—anyone—into their world is an act of great risk. To try and fix or rationalize or wash away their pain only deepens their terror.

Instead, the most powerful thing you can do is acknowledge. Literally say the words:

I acknowledge your pain. I am here with you.

Note that I said with you, not for you. For implies that you're going to do something. That is not for you to enact. But to stand with your loved one, to suffer with them, to listen to them, to do everything but something is incredibly powerful.

There is no greater act than acknowledgment. And acknowledgment requires no training, no special skills, no expertise. It only requires the willingness to be present with a wounded soul, and to stay present, as long as is necessary.

Be there. Only be there. Do not leave when you feel uncomfortable or when you feel like you're not doing anything. In fact, it is when you feel uncomfortable and like you're not doing anything that you must stay.

Because it is in those places—in the shadows of horror we rarely allow ourselves to enter—where the beginnings of healing are found. This healing is found when we have others who are willing to enter that space alongside us. Every grieving person on earth needs these people.

Thus I beg you, I plead with you, to be one of these people.

You are more needed than you will ever know.

And when you find yourself in need of those people, find them. I guarantee they are there.

Everyone else can go.

Photographer unknown, from Tim Lawrence's blog: The Adversity Within: Shining Light on Dark Places

back-to-back

This morning before dawn, day eight since Calvin's last seizure, Calvin suffered back-to-back tonic-clonic (grand mal) seizures. The THC rescue med I rubbed into his gums during the first one did not thwart the arrival of a second an hour later. Perhaps, had I given his morning dose of clobazam early—the benzodiazepine we are weaning him off of—we might have prevented him from having two, though I am loathe to give Calvin anything by mouth in the wake of a seizure in case he has trouble swallowing. Having said that, we often have no choice and so next time we'll opt to.

Hoping the twin seizures wouldn't cluster into a third, we gave Calvin rectal Valium, another benzo, which his body no doubt craves and which we hate to give because of its propensity to mess up Calvin's sleep and for its reputation to cause respiratory suppression. He's been lethargic and sleepy most of the day, though seems to be coming back to life as I write.

After this morning's seizures, I noted a crease in Calvin's brow, indicating to me that he felt some pain, likely a nagging headache. The crease remained much of the day, and so I stroked his head and kissed his face and gave him some pain medicine and held him in my arms when he woke from a nap with a racing heart.

There's really no way of knowing the amount of suffering Calvin endures. Suffice to say he deserves none of it. He's not here to teach my peon brain a lesson, not here to show others what they should be grateful for, not here in his wrecked condition because the universe is trying to find balance, or because of free will or karma, or God's plan, which according to some includes ratcheting up my son's suffering to just as much as he can handle, thought not more—a platitude equal to the biggest crock of shit I've ever heard. Calvin is not here to improve himself for the next life or to pay for something he did wrong in the last. He's just here suffering for no good reason, which is the best reason I have to love him and hug him and squeeze him and praise him as much as is humanly possible as long as we are here, and to never give up on finding ways to ease his pain because no one, including a so-called merciful God, is going to do it for us.

groundhog day

Each new day is pretty much the same as the last, with only the slightest degree of nuance in mood and mobility, cognition and ability, our son Calvin, eleven, still a baby in a prepubescent little boy body.

Every day we wipe Calvin's bottom and change his diapers and chop his food and dispense his pills—carefully cutting some in half—and shake the bottle and draw up and syringe in his liquid meds. We pick him up from dropping and spot him going up and down the stairs and guide him into his chair and strap him in and spoon feed his meals and hear him grouse and cough and squeal and screech, watch him flail and flap, poke his eyes and finger snap. Every day we bounce and burp him on our knee and catch him from falling and worry and wonder what the hell, exactly, is troubling him because he can't say.

Every day we help Calvin don his shirt and we change his soaking kerchiefs and bibs and remind him not to bite the table or touch the pictures or eat the carpet or chew his shoe. Every day we help him get undressed and give him a bath and dry him off and put him into his jammies and squeeze him into his jumper and strap him in and monitor his bowels and check his balance and watch his gait and worry over his osteopenia, his seizures and his wicked benzodiazepine withdrawal. Every day he plays with the shutters and bites his plastic baby toys into ruins and flails his arms and laughs like a maniac and hums incessantly and rubs his eyes and covers his ears and stares at the sun—and its reflection in things—every goddamn chance he gets.

Like in the film, Groundhog Day—since Calvin’s epilepsy diagnosis nine years ago when the litany of drugs began—we’ve relived the same day over and over again, day after frigging day. In the scheme of things, and in that time, our boy has barely changed at all.

A new friend asked me how I deal with what I believe she meant was the sum total of the grief, the loss, the headache, the frustration of raising a severely disabled child, wondering if I had to take it year by year.

"I have to take it day by day," I told her, holding back my tears as best I could, trying to steady my tremble.

And as I sipped hot chai and nibbled blueberry bread I thought about Calvin's brain's mysterious missing white matter, his lack of language, his poor coordination—the fact that he can't even pull his covers up in bed. I considered his impossibly impaired vision, his protracted, nearly stagnant, development, his drugged-up, bizarre behaviors and habits and tics, which I'm beginning to doubt will ever subside. And I realized that my kid is not my kid and hasn't been since the seizures and the drugs began, and how easy he'd be to handle if not for the epilepsy, which eclipses all of his other disabilities combined. He's been ruined, he's been wrecked, and I can never get him back, not really.

But then I remembered my sweet boy and the hugs he likes to give and the cute giggles he makes and the way he crawls up behind me when I'm at my desk writing and grabs my shoulders and neck and hair to pull himself up and embrace me, and the way he's beginning to look into my eyes, and how he sits in my lap again, and the way he smiles that sometimes reminds me of my mother who just died and I realize, I think it's going to be okay.

And then I go home and Calvin comes off of the bus and he whines and balks and drools all over kingdom come, and I think of Groundhog Day—the utter sameness of it all—and I wonder if things will ever be any different.

beth

Kind. Loving. Attentive. Smart. Reliable. Warm. Compassionate. Understanding. Motherly. Ambitious. Calm. Beautiful. Patient. Industrious. Gentle. Enlightened. Selfless. Generous. Considerate. Professional. Advocate. Nurse. Caregiver. Friend.

We love you, Beth, and we will miss you. Thank you for all that you have done for Calvin and for us. May it all return to you karmically and in spades.

Nellie the dog and Calvin with his former nurse, Beth.

mackerel sky

They say it’s not black and white

but grey
I want that grey instead of white-hot
instead of black as dead earth: my boy's seizures colored both
And I have been looking for a long time
I am searching for grey that is smooth river stone
mackerel sky
Even the pure white of soft wind would do
I hide the black
—inside—
that sometimes spews out swift red swathes
I want the white of ocean foam
sand dollar
my boy’s smile
not the blinding white scorch of relentless electric screams
I am looking for the grey that lingers
soft like a ribbon ... a dream
smoke
My white is thin and brittle
chipped
the black rottenness glistening beneath
stinking, putrid
Give me simple grey—easy on my mind’s eye—
give me mackerel sky

 

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.