anniversary

Today marks the twelfth anniversary of my first blog post. In twelve years, and over 1,747,526 hits later (no doubt some of them from bots), scores of lovely people have joined in helping to fuel my journey, recharge my battery, and validate my innermost feelings about what it is to raise a disabled child who suffers from intractable epilepsy. Those wonderful people are you:

all kinds of mothers, fathers, doctors, nurses, restaurateurs, therapists, ice cream scoopers, bloggers, children, ed-techs, in-laws, sales reps, grocery store clerks, photographers, chefs, brothers, teachers, flight attendants, runners, city councilors, dietitians, case managers, receptionists, kindred spirits, painters, octogenarians, presidents, ed-techs, bar tenders, cooks, bus drivers, radio talk show hosts, chaplains, lawyers, actors, neuro-ophthalmologists, contractors, professors, nurse practitioners, marathoners, deans, physical therapists, grandmas, grandpas, farmers, farmhands, coaches, nieces, nephews, priests, college friends and their spouses, athletes, bowl-turners, aunts, uncles, cousins, principles, headmasters, musicians, retirees, servers, brewers, hair stylists, writers,s founders, weeders, orthotists, superintendents, directors, students, ex-students, curators, sisters, poets, producers, carpenters, baristas, CNAs, actresses, technicians, former coworkers, contractors, designers, business owners, candidates, librarians, congresswomen, critics, high school buddies, neighbors, longtime friends of the family, occupational therapists, speech and language pathologists, pharmacists and their staff, hospital staff, phlebotomists, neurobiologists, film makers, celebrities, readers and kind strangers.

Thank you for reading and sharing and connecting and caring. You’ve all done something—whether unwittingly or not—to make our lives richer, more comfortable, happier, better, and for that I owe you each a debt of gratitude.

dear reader

Eleven years ago today, when Calvin was just six, I wrote my first blog post. I didn't really know what a blog was, but despite my ignorance, Michael encouraged my endeavor to create one. He suggested I simply dive in. I did, and it was fun.

My initial hope in writing this blog was to increase awareness of epilepsy's prevalence and plight, and by doing so, increase funding to find a cure. For the first three-and-a-half years, I posted something every day. At some point in the process, my goal shifted into something more broad—a desire to inspire empathy for others, no matter their situation.

I hope every day I achieve that goal. I wish for others to somehow see themselves in my crafting of words about my peculiar, nonverbal, legally blind, seizure-racked, suffering child's struggles. My desire is for readers of my stories to feel less alone and hopeless in this hot mess of a world.

Unexpectedly, writing my blog has made me into a deeper thinker, a student of mindfulness, a healthier person, and perhaps even a better mother of my enigmatic child—and lawd knows, I could use some help in that department. What I didn't bargain on was the amount of love, kindness and generosity that has come my way from so many friends and strangers who read the blog.

So, I guess what I want to do is to thank you, dear reader, for believing in me, for sending on those messages of gratitude, encouragement and love, and for letting me know I'm not alone.

readers write

The sentiments I've received from readers—some from years ago, others more recent—never cease to amaze and nourish me. I send my deepest gratitude to you, dear readers. You are in great part what keeps me afloat. Whether stranger, acquaintance or loved one, you have no idea how much I'd like to hear from you. You quench my thirst for connection in this long and lonely pandemic lockdown.

None of my marathon efforts will ever match yours. Unfathomable efforts by you for so long and with such love, strength and dedication. — Joanie

Wishing you all the best and for Calvin to be well. He is so sweet and he deserves a good and painless life. That is one of my wishes for him and of course you. — Caron

I’m writing an ineloquent email to say that your words touched me deeply and I am thinking of you and Michael and Calvin, and about how time passes and things change and don’t. — Pamela

Thanks for the courage to bare your soul. Such unvarnished truths. And through it all you find the specks of gold. Thank you for you. — David

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

You mention your body: I think of your spirit. Your soul. Your intrepid resilience and gutsy presence. You are love, and to sit with its awesome glow (undeclared by sincerely-modest you, yet clear to the reader) is a privilege and gift. — Peter

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. — Kaila-Ruth

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

If Calvin could somehow choose anyone in the world to be his mom, there is no one else on the face of this entire blue marble that would be a better nurse, a more conscientious caregiver, a more fierce and committed advocate, or simply a more profoundly loving and patient mom than the one he has tonight. And I honestly think he knows that. You should probably also know that doing what you do also helps some of the rest of us find something a little better inside ourselves. So thanks. — Jim

Wish I were there to bring up inappropriate topics at the dinner table and make you laugh ... for just a minute or two. Thinking of you here in SF. — John

Oh, dear. Time to stop lurking and 'fess up—I am listening too, from Zurich. I am the mom of three n/t (neurotypical) kids and here I am, fascinated, terrified, moved, by what you write. My kids see me reading and I explain to them why and what I am reading ... so we are all listening. — Danielle

Even though you may feel alone, you are not. I get it. I understand your words. I am here for you any time, any day. — Karen

I'm listening from far away and feeling. ciao — Federica

From Beyond Beautiful: One Thousand Love Letters, brainchild, curation and drawings by Peter Bruun, text by Christy Shake, photos by Michael Kolster.

so little time

so little time these days to write my blog. my memoir has been neglected. leaves pile up on the ground outside. dust bunnies collect in the corners of the house. days are getting shorter fast. the sun is low, even at high noon. i see it slung in the sky above a tidal inlet where workers break their backs harvesting clams from the mud. 

calvin went sixteen days between seizures. in a month's time, he's only had four grand mals. his focal seizures are at a record low this year. he's taking way less medication—only one antiepileptic pharmaceutical. it seems my homemade thca cannabis oil is what's helping most, and that we are treating his anemia.

he's growing like a weed, though still tiny for someone who will be seventeen come february. almost five feet now. eighty-three pounds. we're still lifting him. keeps us strong, though not exactly young. 

dawn isn't coming until six-thirty. sun is setting at four-twenty today. tomorrow will be two minutes and twenty-four seconds shorter. so little time to do much of anything these days. the pandemic sadly rules.

decade

Like the pandemic, my son Calvin causes time to expand. Perhaps it's his protracted development—exponentially slower than watching paint dry or grass grow—which makes time-space stretch so impossibly. Unlike other parents, Michael and I don't experience fleeting years between diapers and high school graduation, because as the years pass, our boy never really grows up; he's much the same now as when he was little, though thankfully a bit less manic than when he was taking very high doses of three powerful antiepileptic drugs (see below).

Life with Calvin is a paradox in that, though time nearly stands still, it's astonishing to think that he was only six when I wrote my first blog post a decade ago. Maybe it's the writing that moves things along and makes one monotonous day different from the last. Maybe my prose and occasional poetry—or more so, perhaps, the musing that leads to them—are what inject meaning and richness into a life which otherwise might be mind-numbingly tedious, dull and unfulfilling. And how curious to think that, had Calvin not come along, I might not be writing at all. I might be stuck in a stressful, thankless job designing clothes for a hierarchical, outdoor catalog company. I might not be thinking and working so seriously to reveal purpose, to explore myself and others, to underscore and try to right injustices. I might not be considering life from the perspective of disability and other forms of marginalization, and their particular aspects of everyday living which are still unseen by—though not necessarily hidden from—too many Americans.

 

So, ten years, 2,024 entries and 1.3+ million hits since my first blog post, back when I didn't even know what a blog was, I am indebted to Calvin, and Michael (whose idea it was to write a blog) for helping me celebrate what has become a labor of love.

   

Calvin back in August of 2010, not long before I embarked on this blog.

bigger picture

My husband said, "You have to forget yourself." He was describing what it takes to care for our son. It's a monotonous, tedious, sometimes frustrating job which requires laser focus on Calvin's every move lest he get hurt or make a mess out of things, namely his own shit, of which I have much first-hand experience.

In yesterday's post, helicopter mama, I describe some of the minutiae of Calvin's care, my bad habit of hovering over him and his caregivers and, in doing so, my tendency to step on toes. The post drew a number of comments, the first from my friend, Les, whom I've known for twenty-three years. He wrote:

You are the only woman I know that is strong enough and has the right personality to do what you do.

One of Calvin's former therapists commented:

poignant and insightful for those who hope to say the right thing ... but don't.

A friend and mother of a child like Calvin sent me one of two heart GIFs, and another simply said:

Yup.

One reader with whom my post struck a nerve, wondered for whose benefit I write the blog. I explained that I write it for myself and those in similar situations, with the added hope of engendering introspection, including in myself, and to offer insights into messy situations which are nearly impossible for most people to imagine or grasp otherwise. I said I hope the blog prompts readers to put themselves in other's shoes, to recognize their own good fortunes and perhaps inspire empathy, humility and gratitude. I should have added that I aim to reach people who find themselves in any kind of stressful, challenging circumstance, hoping they find solace in my words and perhaps feel less alone.

Another reader, a poet whom I've never met, sent me a personal email in which she said:

I hope most caregivers have grace and understand and allow room for what you need to do to be with your son. Caregivers have a difficult job too—but it is not the same thing as being you in your relationship to Calvin. True healers one hopes for—and the healing is in support of you too. It has to be. You and Calvin are not in isolation from each other, and I (can only) imagine this requires dedicated teamwork. 

She went on to say:

I have been reading your posts for a number of years now—I don’t know how many years. Your honesty about yourself and others—not sham “honesty” to excuse cruelty, but true and difficult honesty—is your integrity. You don’t make this shit up. You hold yourself accountable. I hope most of your nurses and other supporters understand and can be there with you.

Her words brought me to tears; I sincerely hope I live up to them.

While I digested the various comments yesterday, one in particular, I realized that my post was missing something. I needed to helicopter out to see the bigger picture rather than hovering at microscopically close range. I'm not saying caregivers shouldn't forget themselves and focus closely on the job at hand: my boy's safety and well-being. I'm saying that from a more generous vantage point I'm able to see that, for all of my complaining and frustration, most of our many caregivers over the years—nurses, ed techs, teachers, therapists—have been lifesavers of sorts. If it weren't for their assistance, their affording me much needed respite, who knows how I'd be dealing? And I'm not saying I couldn't take care of Calvin without them. I know I could. I did for the first two years of his life and for months at a time since then. But I've little doubt I'd be in far worse shape without having had them, (not that I'm in that good of shape now.) Caregivers have allowed me to walk the dog, romp in the garden, write my blog, research epilepsy treatments, do house chores and shopping, catch a rare movie and sometimes a much-needed nap, and grab a drink and a bite with my husband. But perhaps the most important thing of all that has nothing to do with me is that they have always doted on my son.

As I finish this post—one not unlike most others in which I begin writing without fully knowing where it will end up—I see that it has done what I hope my posts do. It has prompted (my) introspection. It has humbled me some, revealing my thin skin and pettiness. And it has helped me to be grateful for my own good fortunes.

Calvin and nurse Rita

of monsters and medicine

Writing would be so much easier if not for my son—my non-verbal, incontinent, legally blind, autistic, disabled, seizure-prone, drugged-up child who, as I've written before, sometimes reminds me of a mini Frankenstein's monster. Come to think of it, everything would be easier—sleeping, waking, eating, traveling. I'm up at least a handful of times every night to check on and reposition my boy. I often wake to the nightmare of his grand mal and partial complex seizures. I can never sleep in past 6:30 since he must get his antiepileptic drugs first thing in the morning, and he's really a two-person child. Since Calvin goes to bed early and often eats different food than we do, we never eat together as a family except on Thanksgiving. And because Calvin is prone to get or fall out of bed and hurt himself, and therefore sleeps in a safety bed, we haven't figured out how to travel with him, plus we can't legally take him on a plane because of the cannabis oil used to treat his epilepsy.

Going back to writing, today I got my third rejection from The Sun magazine for a piece I submitted years ago titled Of Monsters and Medicine, about me and grief, Dad and his cancer, Mom and her Alzheimer's, Calvin and his epilepsy, and cannabis as medicine for all. Four years ago I was ecstatic when the magazine published my first piece in print, Faith of My Father, which appeared in the August 14th issue next to an excerpt from a book written by Gary Snyder.

Earlier this month, The Sun's managing editor assured me she'd soon have an answer as to whether they'd accept my Monster piece for publication, which I had written in response to their request for writing on caregiving, medicine and alternative therapies. I thought my prose would be a good fit. I guess I was wrong.

The rejection hit me harder than expected, probably because I am so goddamn sleep deprived and since Calvin has had such a sucky month seizure-wise. He's had five grand mals (his fifth one this morning) and at least nine partial complex seizures so far, for a total of fourteen in just seventeen days—nearly twice the number he had in all but one month since June—and we still have two weeks to go till the end of the month.

As I write this, my brain is in analyze mode, trying to figure out what the hell to do with Calvin's Palmetto Harmony CBD cannabis oil dose. I think my mind and my gut are telling me to increase the dose (since decreasing it seemed to yield more seizures, and since I decreased his THCA several weeks ago, and since he has gained a little bit of weight, enough to outgrow his Keppra dose which I don't want to increase, and since it seems with the administration of more CBD his seizure clusters usually stop.

What's so difficult is that the range of CBD dosing is so vast—anywhere from a dozen or so up to several-hundred milligrams per day of whole-plant oils, to as many as six- to thirteen-hundred milligrams for kids taking Epidiolex, the non-synthetic pharmaceutical version. But I must remember that Calvin has always seemed to need higher doses than most kids his age and size for any drug to be somewhat effective.

And as I sit here looking out over my garden I'm reminded that, if not for my little monster Calvin—even though he makes everything under the sun uber difficult—I may not have begun writing at all.

stream of consciousness

It has been four weeks since Calvin's last partial complex seizure. Two-and-a-half weeks since eliminating his CBD oil. Trying hard to focus on his good days rather than focusing on harbingers of seizures to come. Enjoyed a bourbon with Woody, who lovingly calls me a twerp with his Maine accent. I tease him by asking, "what is a twupp?" Our good buddy Roger broke his upper arm in three places and is in a kind of prison that I know all too well. Hopefully we'll be seeing him and his wife, and maybe his kids, soon. Had a great night last night with two of our besties. On the drive home we could have hit some youngsters who appeared out of nowhere stumbling across the dark road. A few miles further we saw a homeless woman seated cross-legged on the shoulder of the road. She was rocking. We turned around and picked her up and drove her back to her tent behind the U-Haul site. She was crying. We gave her some hot dog buns. She can't eat the spinach and tomatoes we had because she suffers from Crohn's. I told her cannabis works well for the disease and she said, "I know, but I can't smoke it because I have kids." I told her she can ingest it. I had a good day today. I saw James, a homeless man I met not too far back. He got a job at my friend Tony's deli. He starts Monday. I was so glad to see him. He told me to say hi to Calvin. I finally spent some time in the garden giving some food to rhododendrons and perennials. It felt good to work in the soil. My arm is slightly sore. Feels good. The grass is almost green. Michael got his motorcycle out today. I love my hubby who is making chicken and dumplings as we speak. It is cold and windy outside. We have a fire in the wood stove. Calvin is about to come out of the johnny-jump-up. He is repetitively humming. Today is day eight since his last seizure. I expect one to come soon. Night before last I woke myself up shouting in my sleep having dreamt that he and a grand mal. College students are walking by in the field behind our house. I like that. The light is dimming. Jazz is playing. Chicken is sizzling. Bourbon is sweet on my lips. I've been drinking less these days. I'm on my way to San Francisco on Thursday. I am elated and frightened. It will be okay. Nellie is the best dog in the world.

Photo by Michael Kolster

thirteen

This morning at one-thirty, exactly thirteen years after my water broke forcing us into an ice storm and then me into an emergency C-section, Calvin had his umpteenth grand mal.

Incredibly, Calvin has made it to his thirteenth birthday. Unlike what most parents might think, the time has not flown by; caring for him has a way of slowing down the evolution of things. Moments are protracted. His development nears stasis. Our lives, in many ways, are inert. This time warp, though, is also a gift allowing me to practice mindfulness, to luxuriate in a square of warm sunlight, to contemplate the form of a shadow, to practice the Zen of chopping fruit, to study my boy and his every move, and to suspend myself in his embrace.

Today also marks six years and four months of writing this blog. Sixteen-hundred-and-twenty-two posts later I am a more fulfilled person and hopefully a better writer. In that span of time, Calvin has suffered a legion of seizures—possibly multiple thousands—ingested tens of thousands of pills, endured sleepless nights, bouts of misery, bruises and bloody noses and one broken foot. But for all his aches and pains my boy, it seems, is doing ever so slightly better with each passing day. I see it when he looks me straight in the eyes, when he makes new noises which give the impression he is trying to talk, when he accompanies me to a new store and doesn't grouse, when he pushes the grocery cart almost by himself.

This betterment I credit to our decision nearly three years ago to begin weaning Calvin off of his benzodiazepine, clobazam. He’ll be rid of it completely sometime late this year. He continues to improve as we inch toward his final dose as evidenced by his sound sleeping, improved balance and walking, his calmer behavior. I also credit the cannabis oils we’ve been giving to him since beginning the benzo wean. One is a THCA oil that I make myself with cannabis flower from Remedy dispensary, who I trust implicitly to supply healthy, safe, consistent herb for my son. The other is a CBD oil I get from the good folks at Haleigh’s Hope, who make an oil using a clean CO2 extraction method from a hybrid of high-cannabidiol strains known for their efficacy in treating stubborn seizures. My sense is that both of these oils have helped Calvin during his benzodiazepine wean by ameliorating his withdrawal side effects and/or keeping his seizures relatively stayed.

Calvin's milestones cause me to ponder my own stasis, and my itch to get back to a writing project I’ve neglected for too long. And so I’m tempted to hang up the blog for a spell so I can focus on completing the half-finished manuscript. It’s hard to give up the blog, though, even if only temporarily; It feeds my soul on so many levels, including the good mojo I get from beloved readers. So maybe instead of goodbye I should just say so long, and allow myself the freedom to check back in and post something periodically, or maybe I should change the format to be more like a photo Tweet. Who knows? In any case, I might not have the nerve to abandon it all together, so please check in, and when you do, I invite you to read older posts.

So, happy birthday my sweet boy Calvin, you who are my muse, my haunter of dreams, informer of my world. You inspire me in myriad ways. I'm so grateful to have spun around the sun next to one as pure as you.

Calvin's first day, Photo by Michael Kolster

going nowhere

When I graduated from college my parents gave me a set of luggage because they knew I had a desire to travel, both for leisure and, hopefully, once I landed my dream job. I moved home, worked an odd job saving everything I earned, then backpacked through Europe for seven months by myself, visiting nearly every Western European country, stopping and working in Paris for a month, and dipping into Turkey for five weeks. Two years later I returned to revisit Greece, explore what was then Yugoslavia, spent a weekend in Budapest then joined my brother, Matt, for a four-week adventure in Tanzania, Kenya and Egypt. My entire trip lasted two months. Ten years later, I revisited some of the same people and places that I had fallen in love with on my first visit to Africa.

In my early thirties, I finally landed my dream job designing apparel, which took me often to New York City, a time or two to London, and to Seoul and Hong Kong. Then, the year before Calvin was born, Michael and I explored Brazil for three weeks, the country in which he once lived, long before we met.

My desire to travel runs deep, perhaps, in part, because I’ve always been attracted to “other.” I have a passion for ethnic and exotic foods, for the hustle and bustle of crowded plazas, for the melody of foreign languages, for the customs, sights, sounds, music and aromas which are unique to different people in different parts of the world, for the beauty, love and wisdom in unfamiliar faces, for the kindness of strangers, some of who took me into their homes.

But since Calvin’s birth, and more so since we began treating his epilepsy with cannabis oil, I’ve been unable to travel much. In the past five years, I’ve been once to my high school reunion in Seattle, once to New York City for less than twenty-four hours, and to LA/San Diego for four brief visits with my mother who was in the thralls of Alzheimer’s until her death last October. It has been over a decade since I’ve visited what was once my beloved home for as many years: San Francisco.

In these past five years I’ve ventured virtually nowhere fun with Calvin and Michael; we can’t take Calvin out of the state because of the absurd and hypocritical federal prohibition of cannabis, even for medicinal purposes. Besides that, Calvin would be nearly impossible to find safe sleeping accommodations; he’s too big for a crib and he’d fall out of a bed and/or get out, fall and hurt himself. The kid is a veritable accident waiting to happen. I’m kind of amazed he’s made it this far.

In that time span, Michael has traveled and photographed in Virginia, Georgia and Pennsylvania for weeks at a time. He was gone for nearly a month when he drove all of his equipment cross-country to Los Angeles and back to photograph its famous river, stopping briefly in Albuquerque to visit friends. Last fall he spent ten days away on a faculty research grant shooting photos of Hawaii's parks and plastic beaches. He’s scouted, photographed and fished in Idaho and Wyoming and spent three weeks at an artists’ residency in Virginia. This fall he will fly to Verona, Italy to oversee the printing of his forthcoming photo book on rivers, and next spring he’ll be in Paris for a three-week residency and a solo show of his work. I don't resent him. Quite the contrary. I am thrilled he can make these things happen and that I can help. I just wish I could go with him.

As for me? I’m going nowhere. Calvin is too complex and difficult for others to care for long-term, and we can’t take him with us, in great part because of cannabis laws. He's even difficult to take on local day excursions because he isn't able to walk around by himself and often balks at doing so with our help.

My high school reunion is in September, but without a nurse to help Michael, I’ll have to miss it for the first time in thirty-five years. And though I dream of heading somewhere—anywhere—with Michael, and even with Calvin, I don't think it will be possible for me to travel in the foreseeable future.

But as I write this I realize I sound like a whiner. I say that because I sit here at my desk looking out on a gorgeous garden of my making, dotted with fragrant blossoms, bees and birds. I realize how ridiculously fortunate I am to live as comfortably as I do, and to have once had the privilege of traveling far more than a lot of people do. I realize, that from my own little hunk of this world, I can imagine, dream and create. I can pour my passions onto "paper" and into the earth. I can remember all of the exciting places I’ve visited, and recall the interesting people I’ve met, from Alaska to Amsterdam, Rio to Rome, Lisbon to Louisiana, Madrid to Mt. Kilimanjaro, and Belgrade to little, old Brunswick, Maine.

ink and dirt

It seems that one of the most restorative acts I can do is to be outside on a sunny day, working the earth, tending to plants and flowers and trees, listening to the birds, watching bees. It's the reason I've not been writing quite as much lately; my need to be outdoors is looming large after such a long drawn-out Maine winter into spring.

And so, to shake the ceaseless angst I feel over my child, to take the edge off of my constant lack of sleep, I've turned my mind and body from desk to earth, from screen to sky, from ink to dirt. Instead of sculpting words, I prune with shears and paint with shrubs and mulch.

I'll return to the page, for sure, in a day or so, for writing nourishes my spirit in ways the earth can't do, perhaps akin to what might be the yin and yang of ink and dirt.

in the meantime

Stepping outside this morning, my breath froze in fifteen degrees. The street was quiet, the sidewalk patched with sand and slush, the front lawns still laced with snow. Even so, it felt a little like spring somehow. The sun beat my shoulders through a sweater and down coat and I could hear in the trees little birds flitting and chirping—the robins, the cardinals, the chickadees.

When Nellie and I reached the fields I let her off of the leash and she led me across the frosty tundra. We were alone, it seemed, but for the pileated woodpecker’s staccato echo coming from somewhere in the woods. I stood at the edge of the trees at the mouth of a snowy path, listening.

Lately, I’ve been bemoaning my inability to come and go as I please, what with Calvin on school break and no help from a nurse, in the face of some wildly windy days with subfreezing temps, sleepless nights, viruses and seizures. I see and hear reports of people’s travels to places far away—the Caribbean, Africa, Europe, Asia—and I wonder if I’ll ever be free to visit those places again. Standing at the forest’s edge I pause, grateful that at least I had the opportunity and gumption to travel extensively in my youth. Some people don't.

This sense of spring in the air gives me a hankering to work the earth, to prune and mulch and dig and plant. The feeling made me realize that I’ve got a lot to be thankful for right here in my little corner of the world. I’ve got an uber-cozy home, a stellar husband, extraordinary friends, a couple of decent hangouts, good food, good health and health care, a fantastic dog and a most loving turkey of a kid. I’ve even figured out, I think, how to reduce his seizures a bit.

I also have my writing. And putting my thoughts and feelings down on paper, and with the prospect of soon being able to get my hands into the dirt, I can forego exotic trips, at least for now.

In the meantime, I’ll hang out at home, traipse around after Calvin shielding him, with my body and flattened cardboard boxes, from staring at the sun, have friends over for coffee or wine, and watch Calvin explore them as if he were blind—oh, that’s right, he is legally blind! I’ll watch my movies and sip my bourbon and look outside at the plants as they bask in the sun and think about which ones I’m going to move and ponder a long overdue trip to San Francisco where things are blooming now, and maybe, someday, a trip to Jamaica with Michael and Calvin (cannabis is legal there). I’ll sit and watch the wind move through the pines. I’ll work my words. Watch students go by. I’ll meet new friends, bake cookies, light candles, hang out with Woody over shots of whiskey on ice and wait eagerly for my husband to come home from work.

Calvin with his buddy Uncle John

down on paper

I soothe my conscience now with the thought that it is better for hard words to be on paper than that Mummy should carry them in her heart.

 —Anne Frank

These words come to me when I write about feeling down, hopeless, lonely, frustrated and grief-stricken. And though I sometimes wonder if what I write in this blog is too hard for people to bear or to understand, I realize that writing it down and sharing it is something that I must do for myself and perhaps, too, for others.

I often wonder if the blood and marrow cancer that began consuming my father when he was just sixty-five, then took his life five years later after a hard fought battle, might have had something to do with having held stuff inside for so many years—his fears, his regrets, his failures, his frustrations, his emotions. At times I have little doubt, as if the mix of those feelings and thoughts festered and boiled inside the body that contained them and eventually became his demise.

So when I find myself, like this morning, caving under the weight of a wordless, irritable child who is headachy or nauseous or frustrated, who has terrible balance and thus requires me to catch him at a moment's notice when he trips and careens and collapses while waiting impatiently for a bus that is late, then I snap at his aide and condescend to the driver and slam the door and break down into tears and gripe at my husband and scold Rudy the dog and scowl at passing drivers and hiss at gnats and stomp around an empty house then, in silence, I realize that I am getting some nasty stuff out. And so I take a deep breath and get it down on "paper" so that I might not get cancer, so I can clearly see my tasks, which are sometimes heavy, so I can forgive myself, so I can apologize to the aide and the bus driver, so I can greet my husband with kindness and my son with patience and the world, perhaps, with a smile.