5.24.2016

my therapy

Even on rainy days, I venture outside for my therapy, working the earth, moving plants, pruning, sniffing, delighting in the vivid colors that are spring. I am in awe of how plants and trees just innately know what to do and when to flower, and how they seem to withstand the elements with such grace, even in Maine. They are so unlike my boy in many ways.

Today, I took my camera into the garden and had some fun with blooms and brush, raindrops and buds, while my little Calvin was in school trying to learn how to do the most basic of things.

Click on any photo to enlarge.
 
 

5.21.2016

what's coming tomorrow

It’s indescribable, really. It smells akin to some sickening mixture of smoke, sweet and shit. The stench I speak of is from a gel benzodiazepine, which seems to seep out of my boy’s skin, the Diastat—rectal Valium—that I sometimes have to give to Calvin when he suffers clusters of seizures.

I loathe to use the stuff on him. Though it does a decent job of stopping the clusters, it seems to give him headaches, it disturbs his sleep and causes its own withdrawal symptoms. Experience tells me, however, that if I don’t administer it after the first or second seizure he’ll have at least one more, particularly if the first one happens well before twelve a.m. like it did the other night. Having said that, I’m still experimenting with different methods to avoid its use. Thursday night, after his first seizure, I tried giving Calvin extra doses of THCA cannabis oil, which seemed to work to delay the onset of the second seizure until almost dawn.

After we had put Calvin to bed, I took a walk in the garden at dusk, the baby monitor in place, hung from a ribbon slung around my head. When the evening light is right this time of year, when a low cloud cover brightens a twilight sky, rhododendron blossoms glow in drifts of lavender, cream, fuchsia and pink. As I strolled, birds flit from shrub to tree before retreating to their nests. And though it was hidden, I knew the full moon was on the rise somewhere in the east.

Just as a whiff of viburnum pricked my senses, I heard an awful gasp. I sprinted to the house.

“Seizure!” I cried to Michael, who was in the kitchen cleaning up.

I mounted the stairs by twos and found Calvin stiff and shaking, his arms bent into ghastly claws, his feet kicking the side of the bed, his eyes wide open as if he'd seen a ghost. Michael swooped in to hold and kiss our boy, tenderly urging him out of submission, while I buffered Calvin's feet, then reached in and held a vial of frankincense oil under his nose. The convulsions waned then stopped, and I rubbed a bit of the oil on the bottom of his big toes because I’d read somewhere this can help abate fits.

It was only eight o’clock, which meant there would no doubt be one or two more grand mal seizures before morning, perhaps when the full moon would be lurking overhead. I calmed myself so I could think. It had been only an hour or so since he’d gotten his arsenal of bedtime medicines and cannabis oils. Hesitant to dope him up too much, and before he fell back to sleep, I gradually syringed a conservative dose of cannabis oil into his mouth and watched him swallow. Michael tucked him in while I readied another milliliter for midnight plus another half to give to him four hours later.

Though well delayed, the seizure came anyway, at four a.m., just after his last dose of THCA oil, so we were forced to give Calvin the Diastat or risk a third grand mal.

Throughout the next day I smelled the Diastat exiting his body, which always nearly makes me sick, as if it were the smell of death.

Both Calvin and I took naps that day. Outside in the sun flower buds plumped, ones that weren't open just yesterday were blossoming, and jays sat on their speckled eggs. When I woke from my nap, I realized Calvin had been unusually quiet for over an hour. Gazing out at trees which had just begun to leaf, I listened for him and thought of several friends' children who died in their early teens, some in their sleep. I wondered if Calvin would wake up and, if not, how my world might be. I wondered, too, if there will come a day when he doesn't have any seizures, when he'll be off of his benzodiazepine, when he'll be less agitated, less deranged, less obstinate, smile more often and be better engaged with his world. I have my doubts; after all these years of the same old same old, the future isn't looking very good.

Then I sniffed the scent of viburnum again, which was drifting through an open window, its flowers just beginning to unfurl in the last day or so. If one attends closely, I realized, the garden looks and smells so different with each passing day. I was reminded of something I'd read earlier: you never know what's coming tomorrow. And just as I closed my eyes for another quick spell, I heard Calvin stirring in his bed.

5.17.2016

these four walls

Saturday:

This morning I cried in the shower again, lamenting my relative confinement to what I often refer to as these four walls. It's a pretty hard life raising our disabled son. We are quite restricted, in ways that go beyond the physical boundaries of our home, including limits on travel, experience and time. I yearn to take the family on a seaside stroll, ache for the three of us to walk in the woods, to see Calvin climb trees or catch frogs or pick wildflowers on the side of a hill. But I also relish the thought of taking a family trip somewhere exotic, cosmopolitan and warm. But for years now the most we seem to be able to do is amble a few yards down our street or in town, or peruse the grocery store aisles. I can count on one hand the times we've walked together on the beach, albeit fleeting, because our boy couldn't tolerate something about the scene, and so we've had to turn around mere minutes after we've begun.

I find myself swinging from one extreme mood to the other, at times submitting to my most tender feelings for my flailing, maniacal child, and the next moment feverishly wanting to punch a hole in the wall. The hardest part, I guess, is that I don't see an end to it all; he's made so few strides these twelve years, and with each passing one his development comes closer to plateau.

At twelve, it appears Calvin may have finally hit the terrible twos. Either that or he is suffering from waves of malaise due to benzodiazepine withdrawal ... or he is ramping up to have his next seizure ... or he has a headache. Or cramps. Or growing pains. Or anxiety. Or hallucinations. Or maybe he is just having tantrums now when he doesn't want to do what or go where we want him to. Or perhaps he suffers some unimaginable and sorry combo of them all.

Though I was once a child, it's remarkable to see what healthy kids can do.

This morning began like a dream, Calvin quiet and calm and happy as can be. But after noon he spiraled out of control. At every turn we were met with a red-faced, thrashing, howling boy given to fits of agitation and crying in the grocer and the jumper and the car.

At times throughout the day Calvin shrieked as loud and long as I have ever heard, and I tried as hard as I could to become desensitized to it all, like numb feet in a frigid sea. Exasperated, I caught a glimpse of myself in the bathroom mirror, my face drawn into a wretched scowl.

Eventually, in order to get some chores done before Michael and his students arrived for an end-of-semester barbecue, I put Calvin in his bed hoping he'd "play" with his toys. When the phone rang, I heard my brother Scott's voice on the recorder. I ran downstairs and picked up just as he was signing off, "I love you Chris."

My words to him gushed out in sobs.

"Calvin has been out of control," I quivered.

It was clear to my brother that I'd had a rough time, having told him of Calvin's troubles, his antics, his affect on us all.

"I'm so sorry," he said, with a tone that embraced me from afar.

I went on to describe the painfulness and relentlessness of our situation, of which Scott has always seemed keenly aware, and of how much I value his response, his gift for listening and validating rather than tending to advise or judge or disregard. I cried the length of our conversation, my throat swollen with a bitter lump of despair. And though our connection was short, I hung up the phone feeling loved and immeasurably better.

Michael's students began arriving just after I'd lit the coals. Blue smoke curled in the sun and breeze, and the smell of mulch and charcoal filled my nose. Calvin seemed to be doing much better and, thus, so was I. Perhaps the trick was his late afternoon dose of cannabis oil. But who knows?

Balmy spring weather lead the students outside where they mingled with each other and threw the ball for Nellie. The garden, these days dripping with color, was at its most beautiful hour, early evening, when long shadows stretch across the lawn and translucent blossoms are lit up from behind. It's in these moments—when Calvin is happy and calm, when I can share my garden with others, when my husband is in his element and when the weather is mild—that the tethers that bind me loosen, and I don't feel quite as hemmed in by these four goddamn walls.

Photo by Michael Kolster

5.15.2016

all about calvin

This wonderful, handmade booklet came home from school with Calvin the other day. His teachers and helpers lovingly captured the best sides of my son. For them, I am most grateful.


5.13.2016

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.

5.09.2016

mother's day

On Mother’s day, last Sunday, I had a fleeting thought about calling my mom before the jilting realization that she died last October. Rain fell much of the day and a dead sky hung heavy on my head and heart. Rhododendron and magnolia blooms bobbed and swayed in a chilling breeze. A few tulips beginning to show their color danced alongside, but somehow I wasn’t cheered. On grey days it still looks and feels a little like November outside, deciduous trees only now sprouting tiny buds, the steely mercury hardly sneaking over fifty degrees.

To pass the time with Calvin (there’s so few places we can take him that he enjoys and where he’ll comply) we took a drive up the road to a riverside park, then made our way on meandering roads dotted with large new homes rising amidst modest double-wides. We stopped at a pond to let Nellie out and so I could catch some fresh air and some respite from Calvin’s errant limbs. With my shoulders shrugged against the cold I approached the bank, its waters nearly flat and silvery, and found it littered with crumpled fast food bags and cups, a faded foldable lounge chair cast aside, one pile of dog shit, a sopping black sock and several empty cans.

The scene, which should have been beautiful and serene, only worked to dampen my mood and amplify my loss, so I got back into the car and began to weep.

“Maybe if I’d had a normal child I’d have been a better mom,” I said, dwelling on my lack of patience and grim frame of mind.

As I wept, I imagined all the cool things I’d be doing with Calvin had he been born with a healthy brain—and thriving—had the seizures and the drugs never begun.

Michael reached over and held my hand and told me how lucky Calvin was.

Back at home, I watched happy photos of women embracing aging mothers and women with their own healthy children in tow flood my laptop screen. I thought of posting one of my mother, then opted against the notion. I saw snapshots of kids at the beach, in the forest, at cafes and on their bikes. I imagined them going to movies with their moms, making mom breakfast, writing poems and drawing cards.

A few days earlier, when Calvin wasn’t doing so well, I’d said to Michael, “It’s so sad that he has to feel so bad all the time.”

And though my one material present on Mother’s day was an oversized bottle of Maker’s in a brown paper bag, when Calvin put his arms around my neck and hugged me close that eve, I realized the amazing gift he is, even when he’s so far from being what we'd had in mind.

Photo by Michael Kolster

5.03.2016

back to the classroom

The students seemed to hold their breaths as I cupped my hands over my face to hide the tears. When I regained my composure, I apologized to the class, and the young man to my left reached out his hand and gently said, "It's okay."

For the third year in a row my friend Hadley invited me to speak to her neurobiology class, a group of thirty college students, many of them majoring in premed. She’d asked me to come talk about epilepsy and about Calvin and to show the students an aspect of neurology other than synapses, neurons and cells. I sat off to the side in the Shannon room of Hubbard Hall, a luxurious space with a high vaulted ceiling and a curved metal chandelier suspended overhead. Hadley and I scooted several brocade loungers and wooden chairs around brown leather sofas, facing them toward a drop-down screen where I projected photographs of my boy who had woken to a grand mal seizure just hours before.

The students filed in slowly, some of them grasping snacks and drinks. From the onset, they seemed alert and engaged as they listened to me describe Calvin’s premature birth, how his brain's lateral ventricles are enlarged, and the various theories neurologists had tossed around about why. Regrettably, I failed to mentioned those theories had since been debunked; to this day, no one knows why my son is missing a hunk of the white matter in his brain. I chronicled Calvin's protracted development, his significant visual impairments, his incontinence, his inability to grasp abstractions or to speak. Then I described his first seizure, our many trips to the ER and the PICU, my dread of ambulance sirens, Calvin’s forty-five minute seizure, my loathing of this thing called epilepsy. I spoke of the ills of anticonvulsant medications, their scores of side effects, their tendency to impede development, their affect on my son’s behavior, on his ability to walk and talk and use a spoon, their paradoxical effects such as hyperactivity and insomnia.

For an hour, I lead the students through the past twelve years, through countless seizures and EEGs, painful blood draws and patronizing docs, through woeful hospitalizations and a litany of drugs and dietary therapies. I tried my best to look into each of their spry faces and saw, sculpted in them, curiosity, sorrow, compassion, empathy and surprise.

It was when I began talking about cannabis that I broke down. When I took my hands from my face and breathed, I was able to squeak, “Cannabis saved our lives.”

I told them the astonishing story of little Charlotte and her mother Paige, who inspired me to try cannabis oil for Calvin. I praised Dave from Epsilon who held my hand while I learned to make Calvin's first oil. I commended the dispensary that supplies our amazing cannabis flower, and applauded the other parents who have helped me blaze this cannabis trail. I mentioned how, since adding a 4:00 p.m. dose of homemade THCA cannabis oil, Calvin has had only one daytime grand mal seizure in over six-hundred days; prior to that, he’d have a grand mal seizure every week or two in the early evening, often in the bath. I went on to explain that Calvin still has seizures, though the grand mals are confined to the night when he is safe in bed, and that it seemed perhaps that the new CBD oil might be helping, too. I emphasized that, since beginning cannabis, we’d been able to safely wean Calvin off of over ninety percent of his wicked benzodiazepine, clobazam, aka Onfi, without a huge uptick in seizures. Benzos, I surmised, should be avoided at nearly all costs, warning that physicians regularly prescribe them—Valium, Onfi, Xanax, Klonopin, Ambien to name a few—for anxiety, insomnia and epilepsy, playing down their downsides and risks of their use, their tendency for addiction, and the dangers of their withdrawal. Later, I added that, for the very worst epilepsy cases, they might be the only option that works.

For the last half hour of class, I fielded a variety of questions. One student wanted to know how often I give Calvin injections, and I understood that I hadn’t made it clear that the cannabis oil I give him by the syringe is oral. Another asked if we were treated differently because of Calvin’s condition, at which point I described splintered friendships, gawking strangers and conceited physicians, all of who, luckily for us, have been the exception not the rule. Her question reminded me of the things people have said like, everything happens for a reason, and I expressed to the class my resentment that someone would believe Calvin was designed to suffer just to serve some unworthy purpose. I went on to endorse advocacy, not just for ourselves or our children, but for other marginalized groups, suggesting that the best anyone can do as doctors or as people is to listen and validate, and if someone speaks of hurt or injustice, we should trust they speak the truth and champion their cause.

Near the end (or perhaps after my talk was over, I can't remember!) one student asked if I knew what the long-term consequences were for using cannabis. I said that I didn’t, but that I’d read that THC might harm the developing brain. I countered by saying that all anticonvulsant pharmaceutical drugs are sedatives that slow the brain and, in turn, can hinder development, and that my guess is that pharmaceutical drugs have done more to halt my son's progression than the seizures themselves. I scorned the medical community’s skepticism of cannabis, the complaints of the lack of randomized double-blind placebo-controlled studies to prove cannaibis’ safety and efficacy, the fear of cannabis’ psychotropic effects.

“All anticonvulsants can have psychotropic effects and can affect development,” I said, scoffing at the double-standard to which cannabis is often held, and adding that many anticonvulsants are not studied on children, yet neurologists prescribe them nonetheless.

The same student then asked, if I knew then what I know now, what might I have done for Calvin's epilepsy. Without hesitation, I told her I'd have tried cannabis first, before any pharmaceutical drug, and that I believed it should be a first-line therapy instead of a last resort.

At some point, I mentioned the hypocrisy of the federal government, citing its decades-old medical marijuana program, and its patent #6630507 on certain cannabinoids as neuroprotectants, both which fly in the face of its current status as a Schedule I drug, which asserts that cannabis is as harmful as heroin and possesses no medicinal properties.

I ended with some statistics, how as many as 50,000 Americans die every year from epilepsy or related causes such as drowning, how one in twenty-six people will be diagnosed with epilepsy at some point in their lives and how, even so, epilepsy gets little funding because of its long history of stigma.

When class was over we applauded each other and I invited them to read and share my blog. A handful of students lingered to ask me a few more questions. As they huddled in, I felt their warmth, intellect and genuine interest, and wished I had a child like them. As the stragglers exited, the carpeted room fell silent. I closed my laptop and was left with images of my adorable, struggling, seizing, trainwreck-of-a-kid, but grateful for how loving he is, then I took a lesson from the student who had sat to my left when I cried, and tried telling myself, it's okay.