12.12.2018

wild

My child is a rabid animal—a brute, a beast, a demon—lunging, flailing, writhing, wailing. He screams and growls like a taunted bobcat, possessed by some dreadful tormentor. At times his mouth purses into a sickening grimace as if he's bitten something foul or rotten. In the seconds-long brevity of calm between his countless bouts of pain or madness, I recall Regan in The Exorcist, and wonder how and when my child will be released.

Our struggle lasts for over an hour. With him, in his bed to keep him safe, my wild child tears at my hair, shoves fists into my throat, throws elbows in my face, butts my head, grabs my neck, kicks me with his restless legs. My attempts at soft restraint yield us no respite. His savage fits repeat every few seconds in a viscous loop of unknown misery. Are these Cramps? Night terrors? Migraines?

I manage to give him some CBD. When it doesn't ease his distress, I give him extra, rectally. Within ten minutes the frequency of his surges ebbs, their intensity lessens. Half an hour later his rage has waned, and in my arms he begins to settle.

In the dark I lie awake for a bit, his hands clasping the back of my neck, his head pressed into mine the way he likes to sleep. Just outside his window, I think I hear a captured squirrel gnawing on its metal cage. A wild thing trapped and desperate can become insane. Are my child and I like that? Wild animals held captive? Deranged? Each by our own bleak state? I imagine straight jackets and padded cells, lobotomies and opioid pills. I wonder if these wretched episodes will ever end.

Finally tamed, my wild son and I sleep. We are safe. Still, we're living in a virtual cage.

12.10.2018

knocking on wood

Again, I find myself crossing fingers and knocking on wood, holding onto hope that the Palmetto Harmony CBD cannabis oil we started giving Calvin last June will begin to better thwart Calvin's fits if we can just find the right dose.

After first starting the Palmetto Harmony in June after a different CBD oil had failed, Calvin went forty days without any grand mals, though did suffer a handful or more of complex partial ones. After a breakthrough grand mal, however, he never regained the same seizure freedom. We tried a CBD reboot—something some parents swear by—but had no luck. In part because of the feeling in my gut, I've continued to slowly titrate Calvin's dose upward.

The forty-day stint was evidence to me that the Palmetto Harmony held promise. We had only once before seen Calvin go that long without a grand mal, and that was when he was taking high doses of three antiepileptic drugs which wreaked havoc on his behavior. But I wanted to get a sense of what a therapeutic dose of CBD might look like, since there is really no consensus. So, I made some queries on social media, and I wrote to Charlotte Figi's mom (of Charlotte's Web fame), hoping to find out. What I learned astonished me: some children Calvin's size (sixty pounds) are seizure free on as little as fifteen milligrams of CBD oil while others take several hundred each day. The wide range might be due to the method of extraction, the kind of cannabis strains used in the oils, the type of epilepsy being treated, and the pharmaceuticals on board. In any case, I felt validated to increase Calvin's CBD oil beyond twenty daily milligrams considering he has always needed high doses of pharmaceuticals for them to be at all effective.

Today, Calvin is taking sixty milligrams of CBD oil divided into two doses—one milligram per pound of his weight. Charlotte Figi, who weighs the same, is taking nearly three times that amount and is close to being seizure free. So far, at the slightly higher doses, Calvin has enjoyed over three weeks with only one, brief, subtle event that may or may not have been a complex partial seizure, plus two grand mals, which is slightly fewer grand mals than his average for this length of time. As we have increased his CBD dose, he has seemed generally calmer, steadier, more compliant, and might be sleeping better. The most evident benefit I have noticed, however, is the speed in which he recovers from grand mals. He bounces back within hours, has been able to go to school the same day, and hasn't had any partial complex seizures in the ensuing hours and days like he usually does.

For this I am grateful, but I'll continue crossing fingers and knocking on wood, because I know how epilepsy rolls.

12.08.2018

still here

i'm still here. just life getting in the way of blogging. enjoy the pics. i'll post again soon. thanks for checking in. xoxo

Photos by Christy Shake and Michael Kolster

11.28.2018

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

11.26.2018

imagine

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


11.21.2018

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

11.16.2018

relentless

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.