This is what you shall do; Love the earth and sun and the animals,
despise riches, give alms to every one that asks, stand up for the
stupid and crazy, devote your income and labor to others, hate tyrants,
argue not concerning God, have patience and indulgence toward the
people, take off your hat to nothing known or unknown or to any man or
number of men, go freely with powerful uneducated persons and with the
young and with the mothers of families, read these leaves in the open
air every season of every year of your life, re-examine all you have
been told at school or church or in any book, dismiss whatever insults
your own soul, and your very flesh shall be a great poem and have the
richest fluency not only in its words but in the silent lines of its
lips and face and between the lashes of your eyes and in every motion
and joint of your body.
Oh, what I’d give to have a boy who could tell me what was hurting him, a boy who could walk beside me to the park without stumbling, a boy who could ride off on his bike with his friends and to have a boy who had some friends to ride off with.
Oh, what I’d give to have a boy who could tell me his dreams, sit by himself and read or draw or write.
Oh, what I’d give to have a boy who wouldn't seize at 9:00 p.m. and then again at 3:30 in the morning, to have a boy who didn’t have to get emergency medicines and whom I wouldn't fear might have a seizure that won’t stop.
Oh, what I’d give to have a boy who’d be my pal on outings, who could wade with me into the waters, run and skip and jump and swim rather than wander in endless circles going nowhere, learning nothing beyond simple balance in the face of dizzying drugs.
Oh, what I’d give to have a boy who could pet his dog and ask for what he wants and know his birthday or anticipate his grandparent’s arrival.
Oh, what I’d give to have a boy who could go fishing and camping with his dad and me, who could order blueberry pancakes for breakfast and eat them with a fork and slurp chocolate malts with his burger and fries.
Oh, what I’d give for a boy who didn’t suffer the ills of countless seizures and tens of thousands of doses of antiepileptic pills and powders and potions.
And though I love Calvin with every fiber of my being, I might just give it all.
There are good days and bad, for all of us. For me, sometimes the sunniest ones can feel gloomy and the days with torrential rains can prove to be the most nourishing. Some days are full of broken promises, gnawing anxieties and dread, while others feel like the beginning of something new and exciting. I have friends who, daily, struggle with their marriages or suffer from debilitating conditions, and others who have children, like my son Calvin, with chronic illnesses or behavior problems. I have friends who have lost their jobs, their spouses, their parents or their kids, and some who are struggling just to keep their heads above water in dizzying mires of too much this or not enough that. These hardships, no matter how unjust they might feel, are part of what it is to be human and we have little choice but to wade through the murk, eventually coming out on the other side. But the knowledge that so many precious, innocent black men, women and children are so frequently murdered by white cops and civilians in this so-called great country of ours sickens me. The problem stems from institutions this country was founded on and profited from—racism and slavery—institutions which have eventually morphed into the New Jim Crow, institutions for which we should be ashamed to fly flags in commemoration.
We think we live in a nation where our equality is protected by our constitution, but in reality, millions of us, particularly our black and brown brothers and sisters, continue to be systemically targeted, discriminated against and marginalized. African Americans are victims of racism and oppression and are more often subject to discrimination, police brutality and backassward stand-your-ground and voter ID laws. They are arrested and incarcerated at grossly disproportionate rates compared with whites. They’ve suffered the most from jobs sent overseas. They continue to be unjustly targeted in the war on drugs. They were swindled by the thousands in the subprime mortgage crisis. They took the biggest hit in the recession. Their children are unjustly punished in our schools, unjustly sent to detention, unjustly put into prison, unjustly confined to solitary, beaten, tortured, condemned, stripped of their rights and sent to their graves. An entire race of innocent men and boys are labeled by white people as thugs because of the color of their skin or the clothing they choose to wear, even when they themselves are the victims, as in the case of young Trayvon Martin.
But when a white man with a racist manifesto guns down nine innocent black people in a church, telling them he has to kill them because they are taking over his country, he's labeled a deranged individual or a druggie and the crime itself is referred to as an accident or an isolated incident or even a war on Christianity.
Some of you may wonder why I write often about race in this blog. I do because I see injustices and I want to right them. I write what I’d be telling my eleven-year-old son, Calvin, if he could comprehend. I write because I am white and the battle against racism needs champions of all races for the message to get through to some. I write because I love and value my African American friends and the contributions they make to the betterment of our society. I write because too many white people are ignorant of racism's existence or flatly deny that racism and white privilege exist. I write because too many white people stand their ground and shut their eyes and cover their ears to the realities of racism, preferring to think that it was buried with slavery, while others are intent on placing blame on its victims. If you’d ask me why, I’d say, I’m not sure, but deep down I imagine it’s because we are afraid to face our demons. Rather than admit our complicity, some of us would rather glide along as if everything is okay, insisting we are colorblind, as if we don’t need to be accountable for other people’s welfare, as if it’s enough to say that a group of black parishioners were shot by a lone wolf psycho rather than by a white supremacist terrorist with considerable backing. I read Dylann Roof's manifesto until I couldn't anymore. He's got it so incredibly wrong, and he's not the only one.
Like anyone, I often feel caught in life's rough seas, at times riding a blue wave of hope and opportunity and at others being sucked into the surge of dread and worry, usually over Calvin, who has chronic epilepsy and suffers a host of other neurological deficits. I can’t change that because he was born that way. But I do what is in my power to make life a little more hospitable for him since he’s victim to so much injustice—though doesn't deserve to be—no matter how unworthy some people might think he is, people like those of Nazi Germany who sent the disabled and the infirm to the gas chambers before sending millions of Jews.
Though my son is very ill and compromised, I still consider myself one of the lucky ones. Daily, I benefit from good health. I've benefited from good parenting, a good education and my ability to have gotten decent jobs and excellent health care in safe, prosperous communities. I've been jobless for months at a time but I've never been homeless or penniless. I’ve been pulled over, taken aside and questioned by authorities, but never arrested. I've worried about my son's well-being, but if he were healthy I'd never worry about his treatment by teachers or about unjust punishment or about his or his father's demise at the hands of a cop or a racist society or a white supremacist terrorist movement. Because we are white we are sheltered from that reality, a reality I'd like to think is not just a part of what it is to be human, but instead, injustice we can change.
I am thinking of the South Carolina AME church shooting victims and their families, especially the mother of Tywanza Sanders who will never be able to kiss her beloved son again.
Regrettably, racism is alive and well in America, constantly stoked by people like Rush Limbaugh, slighted by politicians afraid to enter its discourse or remove blatant symbols of its roots, denied by conservative news organizations, manifested in police brutality, fueled by ignorance and false fears then blamed on its very victims. I look at this snapshot taken a just few hours before the massacre last Wednesday, and I realize how fortunate I am not to be the target of a hate crime simply because I am white. I never have to think about it . . . but I do, on behalf of all of my dear friends and fellow Americans who have little choice but to ruminate on the color of their skin and the deep and dire consequences it represents in this so-called great country of ours.
May the sun bring you energy by day May the moon safely restore you at night May the rain wash away your worries May the breeze blow new strength into your being May you walk gently through the world and know its beauty all the days of your life
If it weren't for the pink, purple, white, red and yellow flowers in my June garden I'd be blue, blue, blue.
At eight o'clock on Friday night Calvin had the first of three, intense grand mal seizures within a span of twelve hours. I'd been out enjoying my usual evening stroll in the garden when I heard a rhythmic rustling over the baby monitor that was slung around my head. Seconds later, I heard my boy's quickened panting.
"Michael!" I yelled, "He's having a seizure!"
I ran as fast as I could, kicked off my rubber boots in the mudroom, grabbed a pre-made syringe of homemade THC cannabis rescue oil from the refrigerator door and scrambled upstairs. Michael had already unlatched the safety netting and side panel of Calvin's bed, so I slipped in next to our son, held his head and squirted the oil under his tongue. Within about twenty seconds, the violent convulsions stopped and, soon after, Calvin was fast asleep. He slept unusually calmly until four-thirty when I felt his body stiffen, then begin to spasm again. I repeated the THC measure (I'd brought a second syringe up in anticipation of a another fit) and again it seemed to shorten the seizure. Regrettably, thought, it did not thwart the third seizure four hours later, so I resorted to giving Calvin the rectal Valium, which his addicted body seemed to need because of his incremental benzodiazepine withdrawal.
Saturday, Calvin was listless, wobbly, congested, and had a low-grade fever. Recently, there had been one case of pertussis reported at his school, so we took him to the doctor to test for it. Calvin has a decreased threshold for pneumonia and bronchitis likely due to his neurologically-based low muscle tone, so we try to nip early evidence of possible bacterial infections in the bud. He's on an antibiotic and seems to be doing better, or so we think.
These recent clusters of seizures cause me to rethink my protocol. Next time Calvin suffers a seizure early in the night I'll give the THC to stop it, followed by a preventative dose of THCA, perhaps with some CBD, at midnight. Then, if he still has a second seizure, I'll give him the rectal Valium rather than waiting for a third to occur.
Though Calvin had three seizures, all more convulsive than usual, they were markedly shorter, and we were able to avoid the hospital where he is inevitably exposed to more germs, needles, leads, splints, bandanges and stress. In fact, since we began giving Calvin the rescue THC oil a few months ago, we've skirted the hospital all together, even in the face of three bouts of status epilepticus.
Today, it's raining outside and my boy is back in school. Besides the seizures, he's been pretty happy lately, sleeping way better and is much, much calmer for the most part. My guess is that the slight reduction in his Keppra a while back and the elimination of about 80% of his benzodiazepine over the course of the last fourteen months have improved his quality of life. He's drooling less, walking better and is more placid when being held.
Even so, Calvin's relentless seizures, drugs and side effects regularly make me blue. But if I just look outside at the bounty of color, texture and lush fragrance that is my garden—a garden younger than Calvin—I realize that with some hard work, patience and resolve, next year it will be even better and I think, maybe Calvin will be too.
About a week ago I learned that my uncle Raymond died. He was seventy five and had been living for the past couple of years with a caregiver who he really seemed to like, which allowed my aunt and uncle some respite in their twilight years. I am republishing this post in memory of my uncle Raymie. Knowing him has made me a better person.
raising raymie
My uncle Raymond, who is now in his early seventies, was born deaf and
his development was retarded. My mother, who is ten years older than her
brother, went off to college at sixteen leaving him behind with his
older sister, Carole, my aunt, who at the time was only eight.
I remember, when I was a child, visits from my aunt, uncles and cousins.
Raymie, as we called him, would putter around the house with his
unmistakable shuffle, grunting and vibrating his pursed lips, “bbbrrrr,
bbbrrr, bbbrrr” like an infant making a raspberry. It must have felt
good because—to him—it was silent. I recall trying to teach him a simple
card game. I wrote basic instructions on a piece of paper since I could
only sign a few words and Raymie's signing was limited. He just got
confused. But Raymie liked crafts and tinkering. He'd fix flat tires on
bicycles and each year he'd send us a beautifully hand-sequinsed cloth
calendar adorned with brilliant exotic birds.
About twenty-five years ago Raymie was diagnosed with Autism. He had
lived from childhood into adulthood with his mother. She divorced my
Grandfather when Raymie must have been about ten and she was left a
widow by her second husband. It was after that that my Grandma and
Raymie moved into a trailer on my Aunt Carole and Uncle Jack’s farm in
Oregon. The two lived in the trailer, packed with antique furniture and
nicknacks, until she died. Raymie was left to be cared for by my aunt
and uncle, whose four children I believe had since grown and left home.
Since then, and for nearly twenty-five years, Raymie has remained in my
aunt and uncle’s care. They have been responsible for his meals, his
health, his hygiene, his clothing, his shelter, his transportation, and
his services. They've kept him active in programs for the mentally
retarded. They have taken Raymond with them on their vacations, to
dinners, to functions, on outings—everywhere. When he was younger he was
prone to running away and to fits of rage and vandalism, particularly after
his father's and mother's deaths, so leaving him by himself has never
been an option, and in any case he is not capable of being independent.
Over the years I have tried to grasp the immense responsibility that
taking care of my Uncle Raymond must entail. I am only beginning to
understand the tremendous, ongoing task of helping him bathe, of keeping
him in good health and of trying to diagnose the source of pain,
discomfort or anguish in a man who has great trouble expressing himself
and would just as soon try to hide it. And in my gradual comprehension
of their reality I have gained perspective, and thus great admiration
for my aunt and uncle, and my cousins who have also helped in his care. I
appreciate them for keeping and loving Raymie for so many years, this
man who is still very much a child. I can never intimately know their
hardship or their joy although, because of life with my son Calvin, I am
beginning to learn.
When I found him he seemed barely alive. His eyes were still closed, his sleek, gray body scarcely bigger than my thumb. I wondered what had happened to his mother, where his nest was, how he ended up on the dirty garage floor and if she’d come for him. I tried giving him some milk and water from a dropper I’d saved from Calvin’s countless medicines. Without intending to, I got some on his nose—no bigger than a pin head—so I tried to dab it off as best I could. From somewhere behind me I heard a peep, so since he wasn’t taking the fluid, I decided to make him a little corner nest of dried leaves, hoping his mother was nearby and would come to his rescue. But I was bracing myself for the fact that he probably wouldn’t survive the night unless she did.
The next morning when I went out to the garage the mouse was gone. I thought maybe Michael had swept him up to save my feelings, but when I spun around I saw him lying in the middle of the garage having been squashed under a boot or a motorcycle wheel. I cried. I kept thinking of Calvin and how tiny and defenseless he was when he was born, how his eyes were closed, too, until he heard my voice. Like this little mouse, Calvin was feeble and without his mother to suckle, at least for the first week of his life when he lived in a nest by himself, not of leaves, but of wires and leads, bright lights, buzzes, tubes and Plexiglas walls.
As carefully as I could, I scooped the mouse into a shovel, took him out to the garden and buried him at the base of a tiny, white rhododendron I call Midge, the only shrub in the yard that has a nickname. I told Michael what I’d done.
“I found two others,” he said, explaining that, very regrettably, he had stepped on one. He led me out to the garden to show me where he’d put them so I could bury them with the other.
“That one’s still alive!” I cried, shocked that it had survived the cold night.
“Well, he’s a fighter,” Michael said, “Maybe you can see if he'll live.”
He picked up the tiny thing while I went to find a small box which I filled with tissue paper. I tried again to give the baby mouse some milk and water, clutching it gently in my fist. After trying a little while I was surprised that he grasped the tip of the syringe and suckled. He drank a lot then pushed it away like Calvin does, so I laid him in his makeshift nest, closed the slotted lid and propped it up under the warm bulb of the oven hood. Then I went online and read that in my haste to rescue him I’d made a mistake in giving him cow’s milk, which can make them cramp or bloat and sometimes die. I read that baby mice this young, less than three weeks old, need to drink diluted kitty replacement milk, a kind of formula, so I took Nellie for a walk to the feed and farm store while the little mouse rested alone.
Upon my return, the mouse seemed a little livelier and had pooped, which I took as a good sign, but when he breathed he made a little clicking sound, causing me to think he got fluid in his lungs. I tried to give him a little of the formula, but he pushed it away, so I massaged his eensy belly with my fingertip, trying to help him digest the cow’s milk and eliminate gas, like I used to do for Calvin. Every two hours I repeated my efforts, but the mouse continued to shun the formula. I held him in my palm for moments at a time and stroked his back. I was heartened when, every once in a while, he’d rub his muzzle with his tiny paws or work up enough spunk to crawl over my hand. Not wanting him to tire, I let him rest again in his box. By the time Michael and I sat down for dinner our mouse hadn’t drank in almost eight hours.
“What should we call him?” I asked Michael, “We should give him a name.” We'd done the same for Calvin before he was born having learned his health was greatly compromised and that he might not survive.
“Turkey?” Michael suggested, which is what we call Calvin when he’s being a turkey.
“Mousy?” I said, remembering that we called our orange canary, Birdie.
“How about Trooper?” I added, since he’d put up such a good fight, and Michael agreed.
We wondered about the spelling, so we looked it up and it appeared the “oo” and the “ou” version can both be used to describe someone who is dogged.
For the next several hours I kept checking in on our little Trooper, whose box we’d wrapped loosely in an electric blanket. I checked on him again at eleven-thirty when I awoke to Calvin’s cough, and by that time our mouse barely responded to my touch and still wouldn’t drink. I felt he was perhaps too hot and it seemed clear he was fading, so I turned off the blanket and left him alone for the rest of the night. By the next morning our little Trooper had died.
Why hadn’t I taken him inside the first night? I should've looked on the internet earlier. If only I hadn’t fed him cow’s milk. Why didn’t I get my glasses before I tried feeding him the milk so he didn’t get any on his nose and breath it in? I should’ve followed my gut about the electric blanket. I think we worsened his dehydration. Why couldn’t my sweet little Trooper have lived?
Like any mother of a disabled child might, I ask myself these same kinds of questions and have these same regrets when it comes to Calvin. I try my best but somehow, sometimes, my best just isn’t enough. Sometimes, no amount of conviction or research or effort or confidence or tenacity or positive thinking or anticipation or preparation or prayer from others seems to change the outcome of things. I just do my best and hope for good results, but there's no guarantee that my other little Trooper, Calvin, who, unlike most children, must deal with so much adversity, will remain healthy and thrive simply because I try.
I've been asleep for a while. Michael crawls in and puts his cold, windblown hands against my warm skin and it feels good. Did you have a nice time with Roger? How was the bike ride? We talk tomorrow, I say in a willowy voice before dozing back to sleep.
In a blink, it’s one o’clock and I hear Calvin stir. He’d had a rough evening earlier, probably suffering cramps and or constipation, but luckily he’s been sleeping well so far. I crawl out of bed to check on him, twist the tip of the little blue flashlight casting its dim beam onto his peachy skin. He’s worked his way out of his covers, so I unhitch the safety netting over his bed, reach in and pull the duvet up around his shoulders without waking him, then I smooth his hair and whisper that I love him.
My angst is worse at night for whatever reason. My mind reels in loops of worry about things that wouldn't vex me as much during the day.
i hope the compact gem doesn’t rot and spread its fungus to the others. will the spruce survive? and what if the bosnian pines outgrow their space? they’re just babies but they’re already giants. just like calvin. i hope he’s going to be okay. i wonder what is ailing him. is it the withdrawal? is he impacted? is there a seizure on its way? he’d be so easy to take care of if it weren’t for the wretched seizures and the drugs and their fucking side effects. i should have called mom today. my bones ache. the bed is hard. i wish i could get back to sleep. maybe if i focus on the rain.
And the rain puts me to sleep just as Nellie dream whimpers and wakes me up again. It’s just after two and though the pitter-patter soothes me, I’m sad and stressed. I try to think of things that make me happy. Nothing works. In this moment I can’t conjure sentimental feelings for my husband, don’t enjoy the pleasures of my home, don’t feel aching love for my son. No. I feel hollow and anxious and I know sleep is the only answer. So, once more, I focus on the rain and just as I’m drifting off, I hear Calvin again.
I get up, check on him, go to the bathroom, notice the brightness of the moon as it casts its glow across a room. I drink some water, slip back under the covers and worry some more about the senseless things and the not-so-senseless things: how much more of this tedium and sleep deprivation can i take? are we weaning calvin’s benzodiazepine too quickly? is the cbd working? how can we be sure? i was stupid to add it when i did. too many variables. will we be able to afford it? will calvin ever get back to being happy? will he ever stop that incessant finger snapping? will he have seizures forever? who is he?
And as my mind begins to wander beyond the worries through the rain to things like ice cream, George Clooney and flowers, I know I am falling asleep, just as I hear the clock strike three.
Yes, Michael and I do get out with friends once in a while, this time for some margaritas that were so frigging good, made by our host friend, Tim, that they've ruined me for liking any other margarita. The salted glass that held mine was so big that my head feels a bit ruined today, too, though—luckily—I only drank one of those bad boys, covering my glass every time Tim came around pouring his guests more, which was often.
That's me on the left kissing another Tim who just minutes before had said in jest, "You're dead to me," since we hadn't seen each other in so long. I told him I'd never let him live that one down. But forgiveness comes quickly when the offender is clad in skinny purple slacks, a viscose herringbone tweed bowler with a sharp plaid vest and a two-toned pair of nubuck oxfords. Yowza.
I'm thanking my stars for the bowl of homemade guacamole our other host, Stephanie, made, which was as good as any I've ever had before in my life, and for the big wedge of Humboldt Fog nestled next to a pile of seedy crackers and, too, for the handlebar mustache I kissed on the face of my buddy, John, and for the laughs with a multitude of other superb guests at both parties we attended and for the vanilla cake topper a couple of hours later, and for the aspirin right before bed and again upon waking this morning and for my cute husband and for a reasonably calm child on this very weary day in the wake of margaritaville.
Yesterday, I got caught in another deluge riding my bike to the junior high school to participate in Civil Rights Day. I’d been invited to talk with groups of sixth, seventh and eighth graders about Calvin and about epilepsy, about disability and civil rights. The kids, gathered around tables in small clusters, sat quietly attentive as they watched a photo presentation I’d prepared on my laptop. In it, I’d arranged photos of Calvin on good days, Calvin in the NICU on the day he was born, Calvin having a seizure, Calvin in the hospital, Calvin drugged up and feeling awful, and a smattering of photos of the drugs themselves, the special diets, the blood draws, the EEGs, more drugs and some beautiful green cannabis tincture I’d made to treat his disorder.
Some of the sixth graders knew Calvin. One girl piped that she’d been in art class with Calvin last year at the grade school. Their questions were thoughtful and diverse. They asked if Calvin had any siblings, wondered about his favorite foods and what he likes to do. They wondered, since he cannot speak, if Calvin makes any sounds, which made me chuckle because, as I explained, Calvin is one of the most vocal kids I know, cooing and chirping and screeching and howling and laughing and giggling. One child asked if Calvin would have epilepsy for the rest of his life. I answered, "I hope not but I think probably so."
A dark-haired boy near the front of one class asked several excellent questions. He wanted to know if it was difficult for us to go places, wondered if we went on vacations. I told him, yes, it was very difficult and that we didn’t really go on many vacations because Calvin has a special bed that he can't fall out of and it’s hard to pack up all of his foods and medicines and find a place that is close to a hospital and someone who can help us take care of him so that we can actually enjoy the vacation. I told him that we can’t take Calvin on an airplane because of his cannabis, since medical marijuana is illegal at the federal level. I went on to talk about the long list of drug side effects and the fact that the drugs impede his development and affect his well-being as much if not more than the seizures themselves. Then I told them about the cannabis and how, even though it is helping my son, the government insists on barring its legality, insists it is as addictive and dangerous as heroine and has no medicinal value. I told them that this wasn't true, explaining that the government has a patent on one of the plant's cannabinoids precisely for its medicinal value, a plant that has been used medicinally for thousands of years.
A cute brunette sitting behind me asked insightfully and politely, “Does having Calvin make you sad because he can’t do things?”
I paused for a moment before answering, then took a deep breath and told her it was hard and sad. I mentioned that Michael teaches photography at the college and that we both went to college and had hoped that our boy would have that choice, too. I told her that Michael and I had both been athletes, that I had been an NCAA swimmer, and that when I see the college boys playing sports it often makes me sad.
But then I went on to say what a rich life we have as a result of Calvin, and that even though he can’t do most things, he is loving and sweet and, because of him, we’ve met some amazing people we wouldn’t have met otherwise. I made sure the girl understood that I wouldn’t wish for Calvin to have to suffer nor for us to endure such hardship, and that, though I don’t believe things happen for a reason, I believe we have the power to find some good in things that are not so good, and so that is what I try to do.
A child in one of the classes asked if caring for Calvin is hard. Another asked, “Are you going to take care of Calvin forever?”
I told him that I wasn’t sure and that my husband doesn’t think I’d let anyone else do it. I went on to explain that if Calvin didn’t have epilepsy, and if I didn’t have to worry about someone else giving him the right amount of the right medicine at the right time I might feel more comfortable giving up the responsibility of his care when he is older, as long as he lived nearby, perhaps just down the street.
At the end of each of the classes, I explained how epilepsy relates to civil rights. I described epilepsy’s stigma, its history of witch hunts and burnings at the stake, its sequestration and incarceration, its assumed contagion and culpability, its false grounds for discrimination, public mocking and bullying. I underscored that not all people with epilepsy are like Calvin, that many appear perfectly healthy and “normal” and can accomplish a great deal, like DaVinci and Michelangelo and Emily Dickinson and Teddy Roosevelt and Van Gogh and Charles Dickens and Edgar Allen Poe and Lewis Carroll, all of whom the students knew of.
Next, I underscored the importance of advocating, for ourselves, for those we love and for others who need advocates from different camps. Lastly, I told them that Calvin is the best person I know because he hasn’t a mean bone in his body, and encouraged them to be kind to others who might look different, act different, sound different, come from a different country, live in a different kind of house, wear different clothes or have different colored skin, because inside we all have the same heart.
The rest of the day at home under dismal skies I spent reflecting on the children’s bright eyes and on the watchful faces of their teachers, and I hoped they'd help the world become a better place.
This morning, I awoke to Calvin’s curdling scream. I call it his seizure cry. I had a feeling it was coming, even though it is only day seven. I gave him 10 mg of homemade THC rescue medicine and the seizure stopped fairly quickly.
Yes, it is hard taking care of Calvin, of powerlessly watching him seize, and it’s even harder knowing it might be forever.
The video below taken three years ago, though important, may be difficult for some to watch. You can also watch it on You Tube here.
We were welcomed into our hosts' home with bourbons on ice, beer and raw oysters drizzled with Luke's tasty vinegar and red onion salsa. On the scenic drive to Georgetown, Michael and I had gotten
caught in a sudden downpour, the fringes of which never reached our destination, where we found no evidence of rain or wind and, due to an unusually cool, dry spring, no bugs. Around us, huge rhododendrons splotched the edges of granite shelves with white and pink blossoms and guarded a gnarled tree bearing a tire swing for their boy, Jacob.
When it was Jacob's bedtime, I made a salad while Sarah cut russets and sweet potatoes into wedges for fries. Nellie was discovered in Jacob's bedroom hovering over their orange tabby cat, Body, in a
state of trance. Sarah remarked on what a good dog Nellie was not to have barked, so I told
her I'd been training her to be nice to Woody's cat, Trixie, adding that it was a good thing for Body that he hadn't bolted because Nellie would've probably gone hunting.
As the evening wore on, Sarah and I chatted a bit about our boys—two peas in the veritable pod of disability—and about the immense difficulties of caring for non-verbal, unstable, incontinent, fragile boys who regularly wake before dawn and whose moods are volatile. We lamented about the added stress of finding consistent, reliable, compassionate help so that we don't lose our minds, our careers, our nest eggs, our marriages, our physical and emotional well-being, because I'm loathe to imagine what might happen to these vulnerable boys and our husbands if something were to happen to us. Needless to say it would be nothing short of ruinous. I went on to reminisce about the time we first met at the Witch's Tit ice cream shack several summers ago, and how, upon seeing Jacob who reminded me so much of Calvin, I was compelled to introduce myself. Little did I know what famous friends we'd become, nor what a match the couple would be, though fourteen years our junior, for our twisted sense of humor, unsparing candor, love of good food and drink and Michael and Luke's bromance with each other and with occasional nicotine and fire.
While Luke grilled the teriyaki
salmon kabobs he'd skewered alongside cherry tomatoes, mushrooms and red onions,
Sarah and I brought our drinks out onto the back deck to enjoy a sun
setting into a bank of diaphanous clouds. I'd forgotten my camera, as did Michael, so Sarah tutored me on how to
use her iphone. As I practiced my panoramic skills, she hammed for the camera,
the shot below being our best result.
Few warm evenings are complete without Michael's homemade ice cream. He made basil flavored this time, with chocolate ganache. The earthy, green scent and taste of the ice cream reminded me of cannabis, the two herbs sharing fragrant terpenes likely responsible for some of the anticonvulsant effects used to treat epilepsy and, no doubt in my mind, having contributed to getting Calvin off of over 75% of his wicked benzodiazepine.
Just before the sun slipped behind the foothills, it shone bright and golden, then in its absence a blanket of mist formed and laid itself atop the water like a sleeping beauty. Calvin and Jacob were both asleep by then, and as I gazed out over the valley, grateful for all that I have, I wondered what our boys might be dreaming.
