finding balance

Every week I spend several hours at my computer and on the phone helping parents navigate the world of epilepsy, its ups and downs, its medications, their side effects, their withdrawals, its alternative therapies, namely medicinal cannabis oils. When I sat down at my desk this morning, I read a question a mother had posted on a Facebook group page called CBD 4 Children With EpilepsyShe wrote:  

As care givers, how do you keep balance in your life to be your best?

I knew what she meant. Before responding, I scrolled through each of the comments that mostly mothers had written, clutching my fist to my heart as I read:

I wish I knew.

I honestly don't know.

I feel lost.

I don’t know how yet.

Trying to figure that out.

There's no balance.

Take it one day at a time. There is no balance or normalcy anymore.

Balance??? the only thing I attempt to balance is the wine glass in the cup holder on the elliptical.

Fake it til you make it!

Yoga. Lots of yoga.

No balance. You do your best. Those in your life who get it will become priceless and those who don’t will eventually drop off.  Any suggestions are easier said then done. Do what works for you in the moment.

This is a really good post. Just reading that I’m not alone makes me feel less like crap.

be grateful for all the good that is in life. Again I thinks it’s healthy to cry every once in a while, you have to let it out.

Sadly, there is no balance. You just scrape by each day at a time. Hang in there.

I’d die for some relief on the regular because I do feel all consumed by it. Depression and anxiety get so much worse over time. Not myself anymore. But day by day we roll along.

No balance here...

each day is hour. By hour. I find when I get a chance to leave the house I worry. Or if I’m here I worry but at least I’m here to help. I don’t know how I will do this long term but for now I take CBD and drink coffee.

one father replied:

There is no balance—I take every minute as it comes. Prepare for the worst and hope for the best. Every time I feel like giving up she smiles at me and it makes every minute of pain worth it. Best advice I can give you—ignore doctors, ignore people’s opinions and follow your gut—the day I turned my back on doctors, family and so-called friends was the day my daughter started to get better. Cannabis is helping her (and me!) along nicely.

Having felt much despair recently from—among other things—sleep deprivation, no nursing help for months, the early-onset of winter and feeling hemmed in, too many seizures and missed days of school this fall, the cumulative stress of being the primary caregiver of a child like calvin, I responded to the post with the best advice I could give at the time:

simplify. spend time with friends. read a good book. delight in the small things. spend time in nature. one day at a time. practice the art of mindfulness. forgive yourself.

Later, as I walked Nellie through the slushy trails, I pondered the mother's question further. How do I do it? I thought to myself. How do I take care of an infant-toddler in a growing teenage body, year after year after year? How do I go on chopping his food, clipping his nails, washing his hair, wiping his ass, changing his diapers, his shirt, his pants, his socks, his bandanas, his bibs, his shoes? How do I go on researching new drugs, their efficacy, their side effects, their metabolization, their half-life, their therapeutic range, their withdrawal protocol? How do I go on researching cannabis and all of its cannabinoids, terpenes, extraction methods, effective therapeutic ranges? How do I go on logging Calvin's daily behaviors in my journal, logging the frequency, size and consistency of his stool, his sleep patterns, his drug changes, his seizures, their frequency, type and duration? How do I go on watching him seize? How do I go on keeping track of his doctor's appointments and blood draws, hire his nurses, train them, manage them, then see them go?

The burden of raising a child like mine is dizzying if looked at under a microscope or from afar, though both are necessary evils. The safest, healthiest distance to keep to achieve any semblance of balance in life—though not always practical or possible—is a day, an hour, a moment.

After I walked Nellie and had done some errands I went to the college's indoor track and ran two-plus miles. It's the second time this week—and one of only a handful of times in the past couple of years—that I have jogged. It felt good. I saw a couple of friends making their way around the red, rubberized track. When I finished my warm-down lap, a handsome, fit, slightly-older man came over to visit, and when I told him I was just trying to get some much-needed cardio, he asked me what other aerobic exercise I do. I told him I don't do any besides walk the dog, lift my disabled son and shadow him around the house. The man seemed impressed, but maybe I'm imagining things.

Walking home in the cold, endorphins coursing through my soon-to-be-fit body, and feeling a slight glow from being noticed, I thought of a few things to add to my list of advice for the parents of kids with epilepsy looking for balance:

exercise. nap. cuss. get out of the house, day and/or night. talk to strangers. know you're not alone. be grateful. 

Photo by Michael Kolster



Imagine there's no heaven
It's easy if you try
No hell below us
Above us only sky
Imagine all the people living for today

Imagine there's no countries
It isn't hard to do
Nothing to kill or die for
And no religion too
Imagine all the people living life in peace

You may say I'm a dreamer
But I'm not the only one
I hope some day you'll join us
And the world will be as one

Imagine no possessions
I wonder if you can
No need for greed or hunger
A brotherhood of man
Imagine all the people sharing all the world

You may say I'm a dreamer
But I'm not the only one
I hope some day you'll join us
And the world will be as one

—John Lennon and Yoko Ono


grateful for

my crazy kid. clean air to breathe, clean water to drink. a roof over our heads. heat, especially when i wake up and it's five degrees. imagination. powerful women. rhododendrons encrusted with buds. eyeballs. sweet, soft, goofy, smart, loyal doodle. long shadows. turkey. brothers. soft-boiled eggs. any sleep i can get. our local grocery store staff. pie—all kinds. dylan. zappa. wonder. stovetop espresso with warm milk. toothpicks. boots. cooking with gas. the accident of birth in a first-world nation. sisters. california. the right to vote. the usps. red wine. my little family. wind. starlit skies. forests. thoughtful men. the sun. homemade gravy. jeans and sneakers. to be alive. good thinkers. friends, new and old and ones i've never met. mother earth. humor. besties. soft boiled eggs with sea salt and butter. embraces. maine. dinner parties. gifford's vanilla ice cream. free speech and the ability to move. warmhearted bartenders and local shop owners. cake for breakfast. community. npr. mary. kate bush's divine voice. alberta spruce. milk. technology and the capacity to disregard it. dishwashers. hot showers. the ability to give. silence. the look of snowfall. college students. sunset in a mackerel sky. healthy bodies. immigrants. handsome, funny, loving husbands. healthcare. curiosity. good books. intelligent discourse. bawdy jokes. embracing strangers. in-laws. cannabis as medicine. decent leaders, of which we now have more. music. art. film. dance. democracy. putting words down. clouds. time. bodies of water. rain. trees.

Photo by Michelle Lisi D'alauro



Epilepsy is relentless. I tell you, it's some effed-up shit.

After a terrible October, November had been shaping up to be decent for Calvin, who had only two grand mal seizures and zero partial complex ones as of the thirteenth of the month. But then Wednesday's grand mal was followed by some sort of event yesterday morning at school (not sure what kind, but probably a grand mal) plus a half-dozen or more complex partial seizures all afternoon and evening culminating into another grand mal at 8:15 p.m. Though we gave Calvin rectal Valium during last night's grand mal to stop the cluster, and though he slept fairly well afterward, he's gone on to have three complex partial seizures today so far.

In summary, Calvin has had at least fifteen seizures in just over two-days' time, so November is on track to be worse than last month was. 

When these spates happen, which is all too often, I try hard not to despair. Michael makes attempts to console me by suggesting I not focus on the number of seizures. And while employing that strategy gains me some temporary relief, it's nearly impossible for me to maintain for more than a few minutes.

For families like ours, epilepsy—far more so than Calvin's gross visual impairments, autism, incontinence, cerebral palsy, physical and intellectual disabilities combined—seriously limits our ability to do literally everything. We're held captive by our son's disorder. Epilepsy is also frightening, harrowing, miserable, frustrating, taxing and dreadful. Folks routinely underestimate and misunderstand it. Living with a child who has intractable epilepsy requires hyper-vigilance, grit, focus, stamina, smarts, patience and strength. I don't doubt some folks probably think I'm overbearing and hypercritical, but it's what the job requires. Luckily, as David Bowie might say, I've become immune to their consultations; I'm quite aware of what we're going through. Besides, Calvin is the one who matters most.

One consolation during these seizure-filled spates that have peppered nearly every month for over a dozen years—though ironic in it's grim significance—is knowing I am not alone.


other's struggles

Back at the grocer. We go nearly every day. Curious kids with their indifferent mothers idly ogle my son. Heedless of my seeing. Clueless of his blindness. Ignorant of his seizing. Unwittingly oblivious to the missing white matter in his brain. Elderly, disabled and homeless folks display their keen insight and compassion. My son hugs them. They make my day a better one.

Between cellophane-bagged grapes and neatly stacked waxed apples, we meet a woman. She says her name is Jane. She's drawn to my son. Calvin knits his fingers madly. Gawks at suspended fluorescents. She's unfazed. He can hear their buzzing. Still, her greeting seems to fall on deaf ears. I tell her he cannot speak. I tell her he seems due for a seizure. Her apple blossom smile withers.

She and I stand and chat. I keep my son in hand so he won't wander. She tells me of her love of kids and of two ectopic pregnancies. No babies of her own to cuddle, no sons or daughters to raise. Instead, she spent time in children's hospitals giving love and gifts to sick ones. Knowing the struggles kids like mine and their families face, people's petty complaints bother her. I feel her pain.

Aside the grocer's bakery, I envision raging fires scorching acres of my beloved golden state. See burned-out cars abandoned roadside, bleeding aluminum. Regal oaks still stand, though now as blackened skeletons. Charred bodies wrapped in cobalt tarps. Entire neighborhoods, homes, lives, reduced to charcoal, cinder and smoke. I consider immigrants working in the fields not far away. Tireless. Sweating. Picking lettuce, apples, grapes. Backs breaking for little pay so the rest of us can buy fruit and vegetables cheaply. I tell Jane there's no comparing when it comes to others' strife and struggle. Everyone has their burdens others can't always see. People with hidden scars and weights sometimes complain. It's okay.

I muse on humans. We are the same the world over. Love our children. Do what it takes. Hope for better futures. Flee dangers. Seek out food, shelter, water, safety, equality. Desperate and fearful, we migrate for our loved ones' sake. Americans would be no different if faced with famine, war, despots, gangs, murder, rape. Like from burning buildings, we'd escape. Complacency and dispassion lead some to pass judgement. Others follow fearmongers blindly and willingly into thoughts and acts of hate.

I think of prayerful people, certain that their god will save them. So sure of answers to their pleas. Staid in their faithfulness. Good and loving folks whom nature haphazardly and grievously incinerates. Fires can scale the walls that even prayful people make. In god's name, pious war over territory on our precious Earth that has birthed us all. Whose land is whose anyway? If there is a god—I think to myself between plastic-wrapped fish and meat—there is one for all of us.

My child and I stand in line and wait to pay. He licks the glass beverage case. I wipe and kiss his drooly chin. Pat his head. Run my fingers through his hair. The woman in the other lane glares then averts her gaze. The man behind me smiles and winks, says goodbye and waves. My kid is seemingly oblivious. I'm sure he hears everything. Perhaps he can sense the burning embers others feel, their need to douse or hide their pain.

Camp fire, John Locher, AP


gut and gumption

It has been over three weeks since Calvin had a complex partial seizure. He has suffered two grand mals this month, the last one being eight days ago. Though October was horrible and chock full of seizures, I'm glad I've followed my gut, which keeps telling me to have faith in his Palmetto Harmony CBD oil. When we first started him on the CBD oil last June, adding it to his Keppra and my homemade THCA oil, it seemed to help Calvin go forty days without a grand mal—about five times longer than his average stint. Shortly thereafter, though, Calvin lost that seizure control, compelling me to take to social media for answers. Some parents advised me to do what is called a CBD reboot, to eliminate the CBD for a couple-few days before reintroducing it at the starting dose. The logic stems from the notion that the body's cells become saturated with CBD, thus rendering it ineffective. Against my better judgment, I tried a mini-reboot back in July, which produced no positive results; August yielded twice as many seizures as July.

In my hyper analysis of all-things-Calvin, I recalled that he has always needed high doses of most of the drugs he has taken—Keppra, Depakote, Onfi, Zonegran, Lamictal, Banzel, anesthesia—for them to be effective. I asked myself, why would cannabidiol be any different?

And so since the mini-reboot, I've continued to slowly increase Calvin's CBD oil every couple of weeks while keeping his Keppra and my homemade THCA oil at steady doses. Calvin is now taking forty-five milligrams of CBD oil per day divided into two doses. Some kids Calvin's weight (sixty pounds) take as little as fifteen milligrams while others take several hundred milligrams daily. The range is impossibly large, making it difficult to know what amount of oil is too little or too much. At Calvin's current dose, I have seen his behavior improve. He is more compliant and, on average, is sleeping better. And though it is yet a small time frame, he has seized less as I increase the dose beyond its previous high in August. I'm hoping this tinkering will lead me to the sweet spot, that silver CBD bullet my husband doubts exists, but one I know exists for other children. Why not mine?

So, I'll keep trusting my gut, using it to guide me. It has been right before. Besides, what else is there? There's no crystal ball, traditional pharmaceuticals haven't worked, we've been told brain surgery is not an option, I don't have faith in the VNS, the ketogenic diet was a stressful, horrible wash, neurologists don't have much to offer beyond increasing drug doses or piling on new ones, there are few solid studies about cannabis and none that I know of on its dosing, and all kids respond differently.

When it comes to my non-verbal son, his epilepsy and its treatment, gut and gumption are really all I've got.



This morning, feeling mostly rested from last night's soaking rain, I woke to see the sun's rays reflecting off of a yellow maple onto a wet cedar deck. Everything nearby—the driveway matted with leaves, the lichen-encrusted fence, the garage, the dawn sky—glowed golden. When I got Calvin downstairs I was greeted with the good news that so many women had won their hard-fought races in yesterday's election—White women, Black women, Latina women, Native American women, Muslim women, gay women, republican and democratic women—and that democrats had taken the House. I felt myself glowing.

After a cold, wet, four-day weekend spent indoors with a sick and seizing child, I stepped outside with Nellie welcoming warm wind and sun. Under a sky nearly as clear and blue as the ones in the West, I mused further on the outcome of the election, on a congress finally beginning to reflect more people like me—women—as well as one beginning to mirror the rest of America's growing diversity. I felt hopeful.

Later, when I sat down at my laptop, I came across a photo my sister-in-law had taken of her eighteen-year-old son, Ben, who had just voted in his first election. In the photo he was providing his family with up-to-the-minute election-night results, the light from his phone illuminating the American flag emblazoned on his chest. And although Ben, who lives in Florida, may not be happy with most of the state's results, I see in this photo the afterglow of what was in so many ways a promising election. I was proud to see his civic engagement at such a young age, while lamenting too many so-called grownups who chose not to vote.

It seems in great part that Americans voted for much of what I had hoped for in my last blog post: love, truth, honesty, decency, justice, equality, brotherhood, sisterhood, unity, wisdom, humility, empathy, charity, diversity. Now, I hope those elected can make policy so that not one American goes without affordable healthcare, not one person is denied their human and civil rights, not one person is disenfranchised.

I was also heartened to see that another state, Missouri, voted to allow the use of medicinal cannabis. Perhaps our new congress will legalize cannabis so we can board a plane with Calvin again. Speaking of which, though Calvin had a horrible October full of seizures, and a poor start to November, I'm still hopeful that the Palmetto Harmony CBD oil will help quell them when we find the right dose.

In the afternoon, I took Nellie out for another walk before Calvin came home from school. At the fields I saw a college student—tall, handsome, thick dark curly hair, light brown skin—taking a photograph with a good old-fashioned 35 mm camera. I waved him over knowing he was probably one of my husband's photography students. I introduced myself by name and as Michael's wife. Shaking my hand, he told me his name—Nate—then went on to explain that he was redoing the first assignment, noting that Michael's class is his favorite at Bowdoin, so he wants to put in extra time. When I asked what the assignment was he said, "light," motioning with an extended arm to the sky at my back. I turned to see that cumulus clouds had moved in above us and at the horizon, their puffy edges skirted in blinding white—silver linings—from the sun passing behind them. Along with everything else today, the sky was glowing, which I took to be a good and welcome omen.

Photo by Lisa Kolster


on voting

vote for love. vote for truth. vote for honesty and decency. vote for justice, equality, brotherhood, sisterhood, unity. vote for strength in diversity. vote for equal rights, opportunity and protection for all human beings. vote for wisdom and sanity. vote for humility. vote for empathy and charity. vote for democracy.

vote against hate. vote against deceit. vote against greed. vote against racism, misogyny, bigotry. vote against fearmongering. vote against divisiveness. vote against conceit. vote against ignorance, disenfranchisement, oppression, intimidation. vote against corruption, nationalism, oligarchy and autocracy.


godawful. godsend.

It's godawful to see my child seize, his mouth ghastly and agape, to hear that unmistakable, blood-curdling, strident seizure-shriek. It's godawful to see his muscles and limbs cramp and spasm, to know he has bitten his tongue or cheek again, to see bloody drool stain his pillow. It's godawful to know he'll suffer fits again and again, having already endured thousands of them.

Friday night's—the first of two in as many days—came out of thin air; no omens in the hours before. Afterwards, he whimpered like a pup, and though he cannot speak, it seemed as though he was trying to talk to us. Something papery rattled in his throat, impeding his ability to breathe. I crawled into his bed, gathering him in my arms as if that would somehow save him. Michael covered us and put on the nightlight. My boy's calm body belied his heart pounding feverishly under my palm.

The Palmetto Harmony cannabidiol oil I gave him in the seizure's wake seemed to thwart a second one that morning. He calmed and rested on and off all day. Weary, though unable to sleep, I read something my friend Martha Brockenbrough wrote which resonates with me:

We often are in the midst of stories we did not ask to experience.

But the task for us as human beings, as living beings, is to see what is in front of us. To love each other closely enough that we do not need words to understand the truest things.

Life asks us to look. And it asks us to clean up messes. It asks us to walk each other to the door.

She went on to say:

And we can look at a living being who is vulnerable and in need as a burden. 

But she asks us to do more—feed, clothe, shelter and love everyone.

At times all too often I do feel my son is a burden, one whose weight literally pulls at my joints and tendons, whose agitation chips away at my patience, whose restlessness impairs my sleep, whose seizures abrade my psyche, whose future terrifies me. But he is also a reason for being—a secular godsend—a human worthy of all the attention and love any of us can give him. He reminds me of the immigrant, the refugee, the waif, a being so vulnerable he needs constant protection from the elements, from accidents, from policy, from those who would prey on him.

In the dark, my mind races alongside Calvin's heart. I think of the upcoming election and what's at stake—the environment, human rights, education, justice, entitlements, healthcare, including protections for people like Calvin who have preexisting conditions—and I wonder why anyone would vote against their own or their children's interests (or not vote at all, presenting a similar risk.) A vote for the status quo would be godawful for a majority of women, the disabled, students, People of Color, LGBTQ folks, non-Christians, immigrants. A flip of the current leadership would be a godsend.

Before Michael and I had tried falling back to sleep in different beds, he reached down and pat my head. Cradling Calvin, I looked up at my husband, my eyes tearing, and said what I so often feel, "I'm so sorry you're not the dad of a regular kid."

And as I held my bundle of burdens, his throat rattling with each breath, I wondered what I'd do without him, my little godawful godsend.

A typical grand mal for Calvin, 2011.