perfect storm

By now I’d usually have seen it rolling in for at least a couple of days. We’ve got pretty much every element that makes for a perfect storm, a seizure: the barometer is nearly spitting blue from its spout the pressure is so low; the full moon is inching its way here in less than a week. it’s day nine—a recent average between seizures. So, too, has Calvin been sick these past several days, first with a fever and for two days now his temp has dipped below 97 degrees for hours at a time—with mottled skin and goose bumps to prove it—though he’s bundled up in fleece and the house is amply warm. And yet the kid is calm, perhaps suspiciously so. He isn’t whining when he wakes up. He isn’t coughing or screaming trying to dislodge his burps. He isn’t dropping down at a moment’s notice in stubborn refusal. He isn’t flailing on the changing table or in the bath. Come to think of it, he didn't have a seizure as the result of the fever. He’s simply calm, affectionate, seemingly happy and content. However, he woke early, seems a bit spacey today and doesn’t want to nap, none of which are very good signs.

The other night I watched Robert Redford’s film All is Lost. At times I thought I was watching my life in metaphor. In it, the rugged guy has a good, clean, solid boat equipped with everything he needs to sail around the world by himself. It’s clear he knows what he’s doing, has the experience necessary, is creative and resourceful. The skies are clear, the air calm. But, in the middle of a vast sea miles from land, by chance he runs into a snag and takes on water. The rest is a beautiful illustration of his relentless struggles, and as I watched Redford get bashed and torn by the sea, I felt my own exhaustion from taking care of Calvin.

Redford's character writes this as part of a letter to loved ones:

I fought ‘til the end, I’m not sure what that is worth, but know that I did. I have always hoped for more for you ...

I feel you man, I thought to myself, Calvin in the next room floating deep in sleep as I listened for his next seizure to announce itself over the baby monitor slung around my head.

Who knows if the homemade cannabis oil that we recently started giving Calvin will slow the tide of incoming seizures or, as I hope, will stop them all together. So far we haven’t reached any rough spots and things feel pretty smooth, almost awkwardly so. I just hope that perfect storm stays off shore, because once it hits there's nothing much to do but hold my breath and wait it out.

photo by Michael Kolster

discretion

The high-risk pregnancy doctor delivered the news about Calvin’s enlarged ventricles which appeared in a sonogram. She said, “Your baby’s brain’s lateral ventricles are enlarged ... this is something you need to worry about ... it could affect I.Q. ... come back in four weeks.” We never saw her again.

Before he was born the neurologist told us that, due to the enlarged ventricles in Calvin's brain, he might never walk or talk. I didn’t want to believe him.

In Boston, the neonatologists tried to assuage our worry telling us that only five percent of babies born at thirty-five weeks gestation needed help breathing. Calvin was one of them.

In his first week of life the neonatologists told us he had terrible Apgar scores and low muscle tone. Several of them described him as “floppy.”

Calvin spent his first week hooked up to leads in a clear plastic box. He had trouble keeping his temperature up, had dangerously rapid heartbeat and respiration and hadn’t developed the suck-swallow reflex. The lactation consultants each gave me different recommendations. One of them instructed me not to look at Calvin while I nursed because it might distract him. I ignored her advice.

Though it was hard work, after seven weeks Calvin eventually learned how to nurse well enough to bring him home from the hospital. He was barely six pounds at that point. A pediatrician told us not to take him outside in case we “ran into” someone. I was never sure what he meant.

At Calvin's first appointment the neurologist repeated the warning that he might never crawl, walk or talk. I still didn’t want to believe him.

Specialists in Boston and Portland studied the absence of white matter in Calvin's brain, his enlarged ventricles, his blood, his body, his muscle tone, his endocrine system, his vision, his metabolism, his protracted development, his genes. Few have gone the extra mile in considering all of the questions that need to be asked and answered. Many resent mine. I ask them anyway. I press for answers.

An ophthalmologist with a notoriously terrible bedside manner said Calvin's vision was poor, but not bad enough to warrant glasses. Everything about Calvin told me otherwise. Then a specialist in Boston tested his vision at 20/1000—five times worse than what is considered legally blind. He was given a prescription for glasses and immediately began seeing the world in more detail, began seeing us.

None of Calvin's specialists mentioned the possibility of seizures, of epilepsy, though its incidence in cases like Calvin's is quite high. Luckily I had prepared myself.

Not a single specialist suggested trying cannabis to treat Calvin's epilepsy. Instead, they balked at my proposal. I went about it anyway with the help of Calvin's pediatrician. Thankfully, the others have come around, and I admire that a great deal.

homespun

Tetrahydrocannabinolic acid cannabis oil test results

watch and wait

This week Calvin has slept like a baby—at least one who sleeps well. For a five-day stretch I haven't had to get up in the middle of the night to check on him. I'm pretty sure that's a record. In fact, he's slept so soundly that in the morning when I wake up and hear a silent stream over the baby monitor I've feared that he's expired in the night. He's attending to his toys better, too, spending up to twenty minutes playing with them on the floor of our bedroom without getting up to race off to somewhere else. He's a bit calmer, enough to turn the pages of a board book, a big smile creeping over his face.

On the down side, he isn't as interested in eating since we increased his cannabis oil from five to seven drops twice daily, about 0.15 mls each dose. His balance is not as good, either, but his mood has evened out some. After school I'm taking him to get his blood drawn to check clobazam and Keppra levels, his two anticonvulsant medications, both of which he is on very high doses and both of which I loathe. Tracking the results as we slowly increase the cannabis oil might give me some idea as to whether the cannabis is interacting with his other drugs causing their side effects to increase. My gut tells me that it is, and I intend to decrease his clobazam regardless, if we see an improvement in his seizure control—perhaps even if we don't.

Today the temperature is supposed to sneak above freezing for the first time in what feels like weeks. I've said before it has been a long, harsh winter, with dozens of days, including this morning, opening below zero. Outside the birds are chirping and with luck most of the snow and ice will melt away this week. I desperately need to get back to gardening and walk with Calvin outside. But for now I've still got some waiting to do, which is something that, since Calvin's birth, I've had to become accustomed to doing.

So, wait I will, watching icicles melt drip by drip and snow banks dissolve into muddy streams. I'll watch, blade by blade, the grass turn from brown to green and the mercury rise by degrees. I'll watch silver hairs sprout one by one atop my head and notice new freckles dotting my skin. I'll be counting the days since last Sunday's seizure hoping for a longer stint than before. And tomorrow night I'll be turning the clocks forward, wishing I could do the same with March, with spring, with Calvin's wean.

photo by Michael Kolster

a million worries

each tiny speck
each wisp of hair
bit of gravel
clod of withered grass
and linty gossamer
in this humble pile of dirt
waiting patiently for the dustbin
represents just one of a million worries
to be considered
at any given moment
on an average day
but especially
these past eight years
and more notably
now

photo by Michael Kolster

day eleven

This morning, after three or four days of a fussy, whiny, intensely grabby, shrieking, hyper boy, we have a calm one. The seizure, which happened eleven days after the last observed one and just after his evening bath, seemed to reset him. They usually do. This seizure was, perhaps, slightly shorter than most, at just about three-and-a-half minutes, and not convulsive at all. But his lips, fingers and toes appeared stained with blueberries, his skin felt hot though he his legs were covered in goosebumps, and I still feared he wouldn’t begin to breathe. I imagine Michael feared the same as we pressed into our boy kissing his face and hands.

Luckily, it would seem that Calvin is only on a tiny dose of cannabis oil—seven drops twice a day. We haven’t had it tested in a lab yet, so we don’t know the exact number of milligrams per milliliter, but compared to Paige Figi, whose seven-year-old daughter Charlotte is taking cannabis oil in Colorado, albeit of a different kind, I’m likely giving Calvin close to nothing, which means there is room to move up. And, so, we have.

We loaded Calvin on the bus this morning, and he made it up the stairs practically by himself. As usual he tried to bite the back of the seat before patting the window as if trying to say goodbye. I just got off of the phone with his school, where his ed-techs say he is doing well and is quiet, the latter of which is usually never the case. I'm looking at it as a good thing, still hoping for improvements, still searching for that elusive silver bullet in an amber bottle of liquid gold.

Calvin after a seizure

gifts

Living in a town next to a small, prestigious liberal arts college and being married to one of its professors affords me a myriad of amazing experiences. Most of all, it affords me the gift of friendships with diverse, cool, smart, funny, nerdy, accomplished individuals. Having attended two state universities lost in a sea of tens of thousands of students, I find myself living vicariously through the adventures of the relatively few students, faculty and staff who spend their days just down the street from my home.

Recently, I attended a reception in honor of a new friend, a visiting Pulitzer-prize winning journalist and feminist who had given a talk at the college. I had a hard time nailing Susan down to say hello and goodbye, but in the meantime I got to smother multiple other compadres with my stinky hugs. There was Kevin, who I lovingly like to call Chuck, and his wife Ann who is totally rogue, like me. I hung with two Sues and Madeleine, who were all very interested in my recent cannabis chemistry, perhaps because they’re all science chicks. Femi was there, so we finally caught up after I gave Barry The Pres a smile and a light brush on the arm. Then I bumped into Tricia who, upon seeing me, said with a sly smile, “five drops twice daily,” referring to Calvin’s dose of the oil. I pinched two fine asses belonging to Jen and Marilyn, both who seemed as pleased as I. I hugged Accra and Lorry, though didn't see Dallas, after I’d already plastered myself on Bridget, Pamela, Anne and Frank, Jen Jack, Elizabeth, Philip, Susan and Michael, who agreed in his own way when I told him that his wife Jen’s ass was fine. With one arm around his waist, I listened to Russ tell me and Ann a funny story about tattoos; we all admitted we had none of our own ... yet. Russ followed up with another humorous tidbit which, since I can't remember it, must've gotten lost in my wine. I’m sure I held Nadia’s face in my hands, but Tess and Cristle and Hadley and Elena and David and Jaed escaped all but a glance somehow.

One of the parents (who I’ll call ‘E’) and I got to talking. E warmly complimented my blog, said it meant a lot because it served as a reminder of the time when E’s child was having frequent seizures causing frequent calls to 911. This was sad news to me. E went on to say that even though their child had outgrown the epilepsy, the rampant seizures and drugs had caused developmental problems that persist. E said, in a manner more eloquent than I can do here, that it was important not to forget, important to focus on how other lives are impacted by epilepsy, on how others struggle. E denied being a warm and fuzzy person, but I know better. I stood there regarding E as the words so artfully came forth from two lips on a face not unlike mine—the face of a loving, thoughtful, empathetic human parent. I was glad for E’s revelation to me, glad for the chills E’s story sent up my arms. E said that what I had was a gift, and I hoped so much for that to be true, because a gift should be something one gives to another, not to be kept for one’s self.

Michael and I had to split the function early to get home to relieve the nurse. I made a point to thank the dining services staff, without whom we'd be parched and hungry. Once home, Calvin's nurse told us that he had had a decent night. I crawled into bed in the room next to our soundly sleeping child, thought about all of my wonderful friends at the college, thought about E, then slipped into a deep sleep, something I seem to be getting more of this week, which is a major gift in itself.

photo by Michael Kolster