the good the bad and the ugly

the good is all in my boy. his flawless soul, fair skin, oceans for eyes, hair the tone of autumn leaves. his toothy smile. his hearty giggle. he’s pure to the bone, not a malicious one in his body. he’s dutiful even in the face of bitter pills morning, noon and night. he knows no want beyond hugging, eating, sleeping, venturing outside—weather permitting—then going back home and taking a bath. he is not greedy or mean or power-hungry or spiteful or racist or bigoted or hateful. his world is, at once, small and boundless. he is only good. good. good.

the bad is just that. a nightmare. the seizures. the years that pass as if decades. the fatigue, the sleep deprivation, the worry, the drugs, drugs, drugs, drugs, drugs. the side effects. the irritability. the relentlessness. the tension. the lack of resolve. everywhere i look there is a problem without an answer like a month without sun, a thirst without water.

the ugly i feel is inside me. it spews out in red and white-hot flashes, stitches my brow such that its creases and folds feel coarse and immalleable like scars. my shoulders draw into my neck like they do in the cold of winter. this ten-year winter is forever and i’m brittle and hardened. its ugliness my pathetic impatience, my harsh language, my unforgiving white-knuckle grasp.

things like these

It's things like these—one of which happened around 6:30 last night—that send me into spirals of despair. 

He's having seizures more often lately—the still, silent ones likely steeling him away in the dead of night as I sleep nearby unaware of their presence. I'm racked with angst over them, and the dread I feel compounds my worry about his extreme pigeon-toeing, his incessant eye-poking that, defying a previous surgery, has turned his right eye inward again, his loose joints, his fractured teeth, his persistent chin rash from fountains of drool caused by the clobazam, his chronic constipation, his anal fissures, his painful gas, his poor balance, his interrupted sleep, his lack of focus and increasing agitation which no doubt have to do with the high doses of antiepileptic drugs he has to take that still don't stop his seizures.

The medical marijuana dispensary I've been consulting with has encouraged me to make the THCa cannabis tinctures myself. They say it might be my best option if I want it immediately, made to my specifications, and for the lowest price. But it's not the best option considering I've got none of the equipment and little spare time what with my writing, holding down the fort and taking care of a kid who can't walk by himself, is still in diapers, won't play with toys for longer than a few seconds or minutes, can't feed himself, and whom I can never take my hands off of except to confine him to a johnny-jump-up (in which he pokes his eye) or in his safety bed (in which he sits on his shins exacerbating his toeing-in problem.)

So the decision is not an easy one. I feel the need to do less, not more, of taking care of Calvin business. But my desire to start him on the medical marijuana is intense. I can't go on living this way and, though Michael reminds me that this tincture will be no silver bullet, we've got to find a way out of this insane cycle of things like these I've mentioned that are slowly but surely driving me insane.

The video below may be difficult for some to watch. If you cannot view it, click here.

warming trend

Saturday evening we enjoyed a bit of a warming trend: thirty-seven blessed degrees just before the snow began to fall. Michael hauled out the barbecue that had rusted a bit having not been used for months. He brushed the hot grill then slapped some thick shumai burgers on it, searing the shrimp-sausage-cilantro-ginger-scallion-habanero slabs on both sides. Luke and Sarah brought homemade steak fries tossed in olive oil and herbs which we baked to a golden crisp. For one night we managed to quench our seasonal affective disorders, slathering our burgers in garlic guacamole and mustard like we do in summer, slurping beers and bourbon on ice and, for a time, mostly forgetting about our disabled sons.

The week before I’d been shocked back into winter having spent several days out west in seventy and eighty degree weather. The relative calm I’d experienced sleeping in, seeing girlfriends, spending time with my mom and siblings—child free—was, once home, yanked out from under me by my whiny, hyper, stumbling kid. The one thing that kept me from losing it completely was the thought—the hope—that a tincture of medical marijuana was just days away from melting into my son’s mouth and dissolving away his seizures and his irritability and, thus, my angst.

But, like a carrot dangling in front of my nose, this medical marijuana thing has become frustratingly elusive, this spiraling forward motion that I sense is mere illusion, one that appears to be moving in a direction but in reality is static. It’s vexing, because day by day Calvin grows, and as he grows he outgrows the doses of his two pharmaceutical seizure medicines. I don’t want to increase them because the hope is to eventually decrease them if the medical marijuana tinctures work.

A few days ago I visited Michael in his photo studio. He showed me the huge prints he’d made for a friend and client. They laid on top of a large worktable, their silver tones shifting and swirling in the flat white sky and silken water of a reservoir and its dam, the chemicals used to make the photograph eerily alike the toxic blend that once was the polluted river itself. As we were leaving I noticed a large cardboard box on the floor. It was overflowing with amber bottles and plastic bags, urine test strips and foil blister packs, remnants of some of the drugs Calvin has ingested during the eight years since his epilepsy diagnosis. Michael means to continue photographing the junk, the awful paraphernalia strewn like pollution in the wake of repeated seizures and vicious side effects, of EEGs and blood draws, ambulance rides and emergency room visits, IVs and intubations.

And then I think about the plant—cannabis—growing in some warehouse all tall and beautiful, lush and green, drinking in all of our carbon dioxide and breathing out life-sustaining oxygen. This plant is there for the taking—for the tincturing—but certain folks ignorant of its uses and benefits are attempting to make it more difficult, perhaps even impossible, for children like Calvin to access in Maine. And, so, I’m frozen in this static winter of ice, paralyzed and fearful of giving Calvin a treatment that might be whisked away at any moment, rendering him with little to no chance of thriving from its benefit. Then I remember what I recently told another mother in a similar situation: that there is nothing to fear but fear itself. So I’ll move forward, pull on my ass-kickin' boots. Gonna go out and kick some major butt. There's a warming trend coming and I'm going to melt the frigid grip of ignorance, testify against the bill prohibiting kief, because without it there will likely be no medicine for my son. Anyone wish to join me?

photo from web

save the date

This year's annual CURE epilepsy benefit will not be held in February, as in past years. Super storm Nemo put a pretty big dent in the number of guests who were able to dig out of the snow to attend last year's event, though we still managed to raise over $22,000 for epilepsy research. So, this year we are going to have a go at it in April instead, while still keeping in mind the original intent of honoring Calvin's birthday, this year being his tenth spin around the sun.

So save the date, Saturday, April 12th, to dress up, dance, dig deep and donate to epilepsy research. There will be delicious food and drink, enough to help you get down with your bad selves on the dance floor. And for those of you who can't make it, please simply join us virtually by donating online at http://www.calvinscure.com and help us surpass this year's goal of raising $30,000 to find a cure for epilepsy.

It's still a long way off, but I am already looking forward to it! Hope to see you there.

rally cry

It continues to be a huge undertaking, this pioneering of the right type of medical marijuana for Calvin and for kids like him who suffer from intractable epilepsy and live in Maine.

Nine months ago I knew little to nothing about this topic. Now I understand that we must procure and grow the right strains of cannabis high in cannabidiol (CBD) and low in tetrahydrocannabinol (THC) so as to avoid the psychoactive qualities in resulting tinctures. I've discovered that high CBD strains are not the only strains that have proven effective for treating medically refractory epilepsy, but that a tincture of THCa, in its acidic, non-psychoactive form, can also help. I have learned things about pest control and soils and fertilizers and growing conditions and clones and decarboxylation and liquid chromatography and tincturing. I've come to understand that it is illegal to transport plants, seeds, clones or tinctures across state lines. I've grieved the death of a handful of children with Dravet syndrome who died from prolonged seizures before they had a chance to get medical marijuana. I've heard that over 100 families have uprooted themselves and moved to Colorado to obtain the kind of medicinal cannabis, yet unavailable in Maine, that will likely lessen or stop their children's seizures, improve their overall well-being, even save their lives. I've read about the corrupt history of marijuana prohibition and have witnessed, first hand, the ignorance of some who would blindly prevent our children from obtaining what might be the only kind of medicine that can help them thrive.

We are so close to getting medical marijuana for Calvin that I can practically taste it. I have been given the recipes, our chosen dispensary has the appropriate strains growing, I'm holding my medical marijuana caregiver card and Calvin has his patient card. I am reading and writing and raring to go.

But just yesterday, I learned of a bill recently introduced to the Maine legislature that will prohibit the sale, use and possession of kief, the resinous substance extracted from the cannabis flower which is used to create various highly therapeutic tinctures that can be precisely measured, titrated and administered to our children without psychoactive side effects.

Calvin, who is now suffering weekly seizures and who has pretty much hit the ceiling with regard to the doses and side effects of his two antiepileptic pharmaceutical drugs, will likely benefit in myriad ways from tinctures of medicinal cannabis, medical marijuana. Calvin cannot smoke marijuana, nor would I want him to. Besides, heating the bud by smoking or cooking it is what renders it psychoactive, in effect turning non-psychoactive THCa into psychoactive THC. Ingesting it in its raw form would not allow for the consistency and minute titration that epilepsy patients require. The only option for Calvin, and for kids like him, is to put it into a tincture that is made with kief.

So, my new battle is to ensure that this bill does not pass, or if it does, the language concerning the banning of kief gets eliminated. I'm contacting our state representatives (you can too) and the folks at our Department of Health and Human Services, who are likely ignorant about the bill's restrictive and harmful impact on our sick children. I'll also be meeting with Senator Angus King (Independent, ME) on January 31st to see if we can rally his support on important federal legislation regarding medical marijuana.

Readers, this is a rally cry. What can you do?

http://www.mainelegislature.org/legis/bills/bills_126th/billtexts/HP124501.asp

synthesis, beauty and light

Jasmine fills my nostrils each time I enter the room, which is painted mustard and is mine for three days. My sister-in-law has left a pile of tiny laminated cards resting in a porcelain bowl at my bedside. The first one I choose says, Power, the second, Truth and the last has the word Patience.

I wake to the sound of a foghorn skipping across the San Diego harbor. During past visits barking seals have broken my sleep and in my brain’s morning fog I’ve mistaken them for the sound of Calvin seizing. When I open my eyes I see a string of Tibetan prayer flags hanging across heavy white linen swags. Sitting up, I can see out the sliding glass doors to the boats in the marina which are floating in glass. The city beyond, though laced in fog, stands sharply against a body of blue mountains, Mexico in the distance.

Tonight I leave all this behind, leave the lusciously warm weather, the rumble of airplanes, the caw of green parrots and the chirp of songbirds, the lush foliage, the restful sight of a big western sky, of dolphins and pelicans, of city lights and the feel of Mom’s silver head, soft hands and loving smile—and family.

Back at home it’s been snowing again and will dip down below zero tonight. My boys are likely cooped up inside. I can imagine Rudy traipsing around behind them all day dragging his claws across the hardwood floors. As I write this I realize I’ve been having bad dreams about them, and the ache to get home deepens. I wish I could bring them here or simply lasso the West, with its sun and calm and expanse and repose, and drag it out there to Maine to melt off all of that cold and ice which makes me draw my shoulders tightly into my neck.

But, I still have today to soak my body in the sun and sop up as much of my aging mother as I can. Whenever I leave this place I never know whether I’ll be seeing her again. Bit by bit the Alzheimer's is melting her into this California scene, dissolving her into its purple and gold wallpaper days. I turn three more cards over—for my mother—and the words that appear are Synthesis, Beauty and Light.

simply mom

She gets littler and littler each time I see her. In so much as it’s her frame shrinking over time, it is also her being, her mind.

Scott and I approach Mom on the grass and swoop in for a group hug. Her downy, white head buries into my chest, her longish arms wrapping around our waists. Though she might not remember our names she seems to know she’s being cradled by her adult children and I’m sure she’d embrace us forever if she could.

We take Mom to the San Diego YMCA to watch Scott swim. In the shade I feed mom pieces of a Subway sandwich and some blueberries, dolling them out one by one so she doesn’t eat too fast and upset her digestion. Just like Calvin, I think. The skin around her watery eyes is red and irritated from rubbing or allergies or both. After lunch I set her down on a lounge chair, thinking the slap-slapping of swimmers arms will help her to rest. I offer her a stick of gum that she attempts to put in her mouth, paper and all.

For a good part of an hour we sit there on the deck. I’m taken back to my days as a child when I spent nearly every day at the pool. Some things don’t change. There’s the lifeguard wearing red and white sweats sitting behind sunglasses, under a visor and atop a tall sturdy white wooden chair. A man on the deck teaches swimming lessons to a couple of grade school kids. One of them, the boy, swims like a spider the way so many of my swimmers did when I was a coach. He’s telling the boy, who is about Calvin’s size, though younger, to reach with his arms and I find myself smiling. Then I find myself crying. I want to be transported to a place and time where I’m teaching my kid how to swim, telling him to keep his chin down, kick his feet and keep his elbows up. I long to see his little scrawny body move down the lane inch by inch until he reaches the deep end where I shower him with praise.

I see Scott in the next lane over, his own long arms tanned and toned from hours spent in the pool every week. He moves through the water like a serpent and I wonder if my stroke looks at all like his, and I am aware that my own boy will never grow into the same kind of man that my brother is, that his father is.

After the swim, at my sister’s condo, we lay Mom down for a nap. She falls asleep hard, then jitters and shakes and I wonder what is going on in her brain. Thirty minutes later she wakes to go to the bathroom. I take her in to help her and as she’s washing her hands we look into the mirror at each other. With my arm around her I tell her that I love her. Looking into the reflection of my eyes and smiling, she replies, “I love you. Really. No kidding.”

photo by Scott Shake

the surface of things

I’m sad to say I’m leaving LA, saying goodbye to the hipsters, the hippies, the rich and famous and the hustle and bustle of a beautiful, vibrant, diverse city. On the surface of things, Los Angeles might simply appear like a mass of cars in a concrete jungle that in one direction kisses the ocean and in the other meets corrugated canyons and foothills. Though I spent only a couple-few days there, it felt like a week. Strutting the streets with my girlfriend, Seti, we dipped into pastry shops, ran into celebrities, drooled over boutique items such as a pair of $610 nubuck boots and $275 jeans, ate Mexican food in a boisterous gay bar, sipped coffees and beers and wine, noshed on a sinfully delicious four dollar gluten-free vegan donut (who’da thunk?), strolled barefoot on the beach, dined outside under a full moon and laughed so hard at times I nearly wet my pants.

My time with Seti was as easy as a soft shoe, having known each other for nearly twenty-two years and having been through the thick and thin of it all. At dusk we walked arm in arm along the Venice canals which were lit with strings of lights and stars. As others strode past us I became aware that Seti and I likely appeared as lovers. I smiled at the reminder that none of us really knows another’s reality simply because of how it might appear on the surface of things.

Yesterday, after Seti and I said our goodbyes, Elizabeth and I said hello. We hugged like old friends though we’d never met before. The soft, southern voice I’d heard on the phone matched her gentle features, her loose, wavy hair, creamy skin, smiling eyes and shapely curves. She introduced me to her son Oliver who is sweet as the lemon meringue pie her chef husband baked. We made a pleasant drive out to the Valley to pick up her teenager, Henry, whose sly sense of humor I immediately appreciated, and when we got back home I met Sophie.

Sophie, eighteen, has suffered frequent seizures since she was an infant. Recently, she’d gone two weeks seizure free since having started a tincture of high-cannabidiol medical marijuana called Charlotte’s Webb. Sadly, though, yesterday Sophie had seizure after seizure at school and at home. In her thickly padded room she laid breathing deeply curled up on her bed. Noting the furrow in her brow, Elizabeth and I sat next to her stroking her arms and legs and offering reassuring messages of love.

Though I’d seen many photos of Sophie I was struck by her willowy beauty. She’s got her mothers dark eyes and her delicate face is framed in gorgeous sprays and ringlets of long blackish hair. I watched Sophie have her seizures, saw her arms and hands clench and shake. With each one something knifed my heart and I felt my own brow begin to cinch. Like when Calvin has a seizure, I silently floundered in feelings of helplessness, anger, frustration and despair at the suffering that kids like ours have to endure for a lifetime, it would seem.

I am hoping that what appears on the surface of things, these seizures Sophie is having, are just blips on the screen and that what is happening on a deeper level is healing, soothing and restorative, hoping that we've scratched epilepsy's surface, disrupted its balance, broken its electric grip.

Me and Seti over the Venice canals

on a jet plane

From yesterday:

The first time I set foot on an airplane I was seventeen years old. My parents took me to visit my sister who was living in the Virgin Islands teaching people how to scuba dive. I experienced a lot of firsts on that trip: traveled outside the continent; drank my first mixed cocktail (I think it might have been a daiquiri); watched my first movie screened from inside a jungle; learned how to scuba dive; collected and ate conch for the first time (and the last); weathered a hurricane; sweated in my sleep; belonged to the minority; seen my mother in shock after she’d been mugged; voiced anger at my dad; sat inside a car ankle-deep in rainwater.

Since then I’ve probably been on hundreds of flights for work and for leisure—to Istanbul and Indiana, Amsterdam and Athens, New Orleans and Nairobi, Cairo and Chicago, São Paulo and Salvador, New York and Nashville, Dallas and Dar es Salaam.

There was a time when we traveled a fair amount with Calvin—before the epilepsy—but taking him anywhere these days makes for a difficult preparation and journey and, once at our destination, we find ourselves in the company of a completely dependent kid without the aid of a nurse, without the luxury of long school days, often lacking the johnny-jump-up and absent a safety bed. So, though we used to travel cross-country with him, we don’t anymore, though perhaps one day we will.

Today I am headed to Los Angeles. It feels strange to wrestle the throngs headed west with me—the parents of shrieking babies, the waxy men and women who’ve put their faces under the knife, the irritable flight attendants, the svelte yoga chicks, the potbellied businessmen, the ill, the elderly, the pierced and tattooed, the electronically addicted, the preppy dudes in first class talking across the aisle about fairways and golf balls and caddies.

I see a mother with her boy who must be a few years younger than Calvin. My eyes linger on him waiting to see what he does next. He moves effortlessly—tetherless—from one airport gift shop display to the next. His eyes fix on objects, on his mother, then he asks her for candy. Words stream from his mouth in perfect syllables. She understands him. She knows what he wants, but denies him. The boy doesn’t melt into a tantrum, doesn’t flop onto the ground when she asks him to come. Instead, he floats and buzzes around her, quietly, like a faerie. She floats, too, unburdened, her hands free, her eyes on the gate ahead trusting that her son is flitting close behind.

Once seated, I open my book, The Reason I jump. It is written by a thirteen-year-old Japanese boy who has autism. He is telling me why kids with autism do what they do, and I feel I am reading about my boy Calvin, perhaps learning better how he ticks. The author is telling me that Calvin’s behavior isn’t his fault, and while I know that to be true, I need to be reminded. At once, I want to turn the plane around, haul ass back home, scoop Calvin up and kiss him all over—my floppy, wordless, legally blind, autistic, seizure-stricken, drugged up, hyper, developmentally delayed, precious boy. And it's an unsettling feeling to realize that no destination in the world will ever feel completely good and right as long as I know that Calvin can’t be there floating along beside me.

photo by Michael Kolster

hiatus

In less than twenty-four hours I’ll be boarding a plane for California. I’m mostly looking forward to it, though I’m already missing Calvin, Michael and Rudy the shit-for-breath dog. It’s a bit of a catch-22 in that I desperately need a break from my son and the cold and the snow and the ice and the tedium, while at the same time I worry and loath leaving because Calvin is still sick and bound to have seizures as a result.

Last night on the phone my friend Elizabeth (my blogger, dragon-mom friend from Los Angeles with whom I’ll be visiting for half of a day) told me I need this break. She underscored that, having somewhat adjusted to life with Calvin as being a kind of new normal, I’m probably not even aware of how badly I need it. But I do know, for my health, I’ve got to be able to enjoy a night or two without getting up five times like I did last night, and I need to be able to sleep in past six o’clock. For my psyche, I need to relinquish all that is Calvin-centric: the shopping, the meal-making, the pill-cutting, the dispensing, the bathing, the dressing, the laundry, the feeding, the diaper changing, the walking around, the lifting, and instead enjoy a hiatus free from my whiny-ass, drooling, pigeon-toeing, stubborn, loud, hyper, albeit mostly adorable, kid.

On the agenda: soaking up tons of sun to make up for my vitamin D deficiency; wearing tank tops and flip-flops; enjoying inordinate amounts of laughter and reminiscing with my dear friend Seti, who is really more like a sister; more shits and giggles with my friend Elizabeth who, by the way, I have never met in person, and with whom I’ll be discussing, among other things, her daughter Sophie’s recent success with medical marijuana; a quiet train ride to San Diego to meet up with my brother Scott, who is flying in from Tucson to see me, my sister Caron, my brother Matt and his wife Stacey, and of course my eighty-four year old mother, Harriette.

Caron is hosting a belated birthday party for my mom, and inviting a few of her friends who know and love my mother and have watched her fade over the years. We’ll tease my mom about her boyfriend, Mike, who has taken her on motorcycle rides in the past. Mom will do things like try to eat off of other people’s plates, suck down wine from any and all abandoned glasses, stick her tongue out at us when we tease her, laugh at jokes and make some of her own. I’ll try to give Matt and his wife a bit of a break and help take care of Mom much as possible because, to a great degree, I know what it’s like to be in their shoes.

Then, the following Monday I’ll be saying good-bye to the California sun—it’s supposed to be in the seventies and eighties—to board the red-eye from San Diego home. At that point it’ll be one week closer to spring in Maine, one week closer to giving Calvin his first tincture of medical marijuana, and just hours away from hugging my boy, holding Michael close and petting Rudy, the ninety-one year old dog.

friday faves - margarita mamas on mars

From November 2011. I was inspired to repost due to a nice gathering of women last night:

There’s few things better than sitting on a red vinyl and chrome stool—Danny behind the bar crafting grapefruit margaritas—with a couple of chicks over a platter of nachos at the local Mexican hangout.

It all started with Calvin ... and Ellis. Ellis is one of Calvin’s classmates in his first grade mainstream homeroom. I’d met her at school and then again while out for sushi with my in-laws. She’d introduced me to her mom then, who seemed nice enough.

Wednesday, I woke up feeling better than the day before, which wasn’t hard, having cried a lot over an unhappy, sick child who, of late—likely due to his high doses of seizure drugs—isn’t much interested in eating. I’d spent some time staring off into a blurry space wondering where it all went so wrong, what I might have done during my pregnancy to have hurt my baby’s brain and feeling guilty for being frustrated, angry and impatient with my sweet, innocent, good child’s inability to stand upright and walk by himself without falling. And then I get this email ... this email from Ellis’ mom in which the first line reads, “ellis wants to have a play date with calvin.”

As it happens Calvin had his first play date yesterday. I invited over my new friend Sarah and her boy Jacob who shares some things in common with Calvin—his wordlessness, his innocence, his inability to walk unassisted, his slow development, his delicious cuteness. But if memory serves me, Calvin has never been invited on a play date before. Ever. I reread the email to Michael and wept.

Later, as I was taking a shower, the phone rang. I played back the message of an unfamiliar, husky female voice announcing, humorously, that she felt a bit like a stalker calling me. It was Kim, Ellis’ mom. She mentioned she was heading out later for some impromptu margaritas with a couple of friends who she thought I might like (she’s been reading the blog religiously so knows me to some extent) and would I like to join?

So while Michael was home trying, mostly unsuccessfully, to get Calvin to eat something, Mama was out getting a buzz with a basket of chips under low lights amongst happy faces, some familiar, some not.

The three of us gals talked about a whole range of things from chocolate milk, to our kids, to the wall of shame in our kid's cafeteria. From the importance of educating children about different kinds of families (ones with two moms or two dads, no dads and the like) to beans and pregnancy. We even talked about a grandma trapped in a small closet with a raging electric floor sander. You name it—we just about covered it. I  made some new friends, broadened my horizons, and ate some pretty kickin' nachos, ta boot.

With an icy cold glass in her hand, Kim told me that now, after having read much of Calvin's Story, when her kids get out the scissors and a ream of paper and proceed to cut it to shreds, into billions of tiny pieces, instead of getting perturbed thinking I have to clean this mess up, she stops herself and thinks I GET to clean mess this up. When I heard her say this, looking into her clear dark eyes, her smooth, perfect complexion in no way reflecting her forty-five years, my heart swelled. She gets it, I thought to myself, and smiled, she appreciates what Calvin and I are missing and she's bold enough to risk saying it.

I remember telling other moms about my child whose brain wasn't complete, who cried incessantly, my child who couldn't crawl, couldn't sit up, didn't want to eat, who was missing all sorts of milestones, whose future was dim at best, and some would say, “welcome to motherhood.” When I told them that my son couldn't walk some said, “be thankful, because once he starts walking you'll never get to relax,” and when I told them about my toddler who seized, had to take medicines and whose speech wasn't emerging some said, “well, when he does start talking you'll be wishing he'd shut up.” It seemed they were trying to level the playing field, to include me in the shared sport of motherhood. I understood that. But what they didn't realize was that, in my humble opinion, we were playing different sports. And even though all mothers have immense challenges, it still seemed to me at the time that they were lawn bowling on some very tidy green with, perhaps, grass stains on their knees while I was sweating in some boxing ring, being thrown against the ropes, getting roughed up and bloodied, sucker punched, knocked down and stomped on all by my little defenseless, drugged up kid and his relentless seizures.

Not long after Calvin was born a friend sent me a story called Welcome to Holland, in which the author attempts to describe what it is like raising a  disabled child. She compared it to planning a vacation to Italy only to be rerouted to Holland. I never liked that story and thought, if I had written it, I might describe raising a disabled child like planning a trip to Italy but ending up in a war zone or perhaps even on Mars, which is where it feels I live much of the time.

But fortunately, in my travels through life with a sick, disabled child, I've met several moms, some with disabled kids of their own, some not, who'd gladly travel to Mars with me, who've maybe been there before, and who sometimes, I think, perhaps even came from there, like I think I did.

Good thing here on Mars I can still get Danny to make me a galumptious grapefruit margarita that is simply out of this world, and takes me there.

Calivin, Rudy and Jacob

missing you

Okay. So I'm missing you guys already, feel a void in my life after just a single day of not posting to the blog. I’m going through a withdrawal of sorts having not shared in words my ...

pride and frustration over Calvin’s behavior at the dentist, his subsequent 103 degree temp, his refusal to drink, my worry, his vomiting, his seizure, my spiraling dark visions of his health, my excitement over the prospect of beginning medical marijuana within mere weeks, my regret over having not started it sooner, my dread of leaving Calvin and Michael for a week, my excitement to see friends and family in California, my fear of being so far away and of Calvin slipping away silently in the night.

In so many ways this blog—you readers—are my lifeline. I suppose I’ll have to wean myself from it, and you, to a certain extent. Right now going from posting every day down to every week feels like cold turkey and I need my fix. So here it is. And many thanks to those who’ve let me know you are out there hoping and dreaming and rooting for us. I promise, I'll keep you on your toes. Don't give up on me yet.

Here's a little gift from me to you:

stepping back

Dear Readers,

After well over three years of posting to this blog every single day, I have decided to pare back and post weekly, perhaps with an occasional mid-week post or two, rather than daily.

Last year around this time I began writing on what will one day, hopefully, be a published memoir. I wrote fast and furious for three solid winter months, but since returning from a visit with my mother in San Diego last April, the only work I've done on it is to edit what I've already written. I'm aching to sink my teeth into it again, to make some real progress, but I feel spread too thin what with the daily posting of the blog, the immense work and time-suck it is trying to figure out this medical marijuana thing for Calvin, not to mention taking care of Calvin, trying to do housework and walk the dog and grocery shop and exercise and sleep and read and spend time with my husband without my face buried in my laptop.

So, I'll be stepping back a bit though not quitting. I encourage you to browse often through the 1,189 posts sitting in my archives—perhaps select one a day from that list—share with friends, and comment. I'll still be here listening and writing.

Thank you for understanding. I knew you would.

Love to you all,
Christy

simple green

Like a drip of rain falling on a window I hear the faintest of faint swallows from the next room. It is almost dawn, dark outside, a warm mist clinging to the earth as if poison. I feel my heart flutter in my chest in fits and starts. At Calvin’s bedside, Michael and I can see his eyes are open and vacant, and he swallows again, then once more. The seizure has him in its grips, though is nearing its end since his lips and fingers are pink. He doesn’t acknowledge our presence, only lies there as if in a coma. Knowing he’ll fall right back to sleep I slip into bed with him and Michael turns out the light. For the next hour he shudders and stretches, clicks and swallows. The sounds in his gut remind me of tall redwoods creaking in the wind, the way they might do on a morning like this one.

We’d seen it coming for days, felt the pressure building like tectonic plates—the incessant whining and coughing, the staring at the ceiling, his eyes following some apparition, his refusal to drink water, his restlessness and agitation. I had tried to put it down as a sign of sheer boredom, what with being cooped up inside and nothing to do during this relentlessly cold winter break.

Yesterday, we visited a local dispensary which will be making Calvin’s cannabis tinctures. Michael, Calvin and I met the owners, a handsome couple with, as far as I can tell, hearts of gold. Another mother joined us, one who had spoken to me a few days earlier about her daughter’s seizure freedom since beginning treatment with the dispensary’s medical marijuana last September. They’d all watched us approach from the car, Calvin holding both of our hands as we stomped through the icy muck. As we entered the secure foyer the warm smell of cannabis met us and I immediately felt relaxed. We women hugged and for a moment my eyes swelled full with tears of hope. Hope that a simple green plant extract might give my son some relief.

In bed with Calvin after the seizure we sleep holding hands, my thumb in his palm, his long, slender fingers curling up around it, his skin smooth like warm paraffin. I wonder how many of these silent spells he is having in the dark of night. I wonder how much longer I can take his irritability, his persistent eye poking that is ruining his visual alignment, his endless whine-coughing, his loathsome repetitive behavior.

Outside now it is sixty degrees warmer than it was a few nights ago. The plants have relaxed and are drinking up rain. Sitting at my desk I imagine the snow on the ground as if it were the gritty contents of a trillion pharmaceutical capsules strewn over the land, obscuring the earth, suffocating, paralyzing, stifling growth. Then I imagine the melt that will come in a couple of months when its chalk white is replaced with the simple green of life. Maybe—just maybe—my boy, too, will emerge from this poisonous fog, from the smothering burden of these endless seizures and mountains of bitter white pills.

30 Signs You May Have a Severely Disabled Child

Written by Roy L. Ellis

1. You start noticing other children all wear their jackets backwards.

2. You start brushing your teeth before you eat.

3. Your child's wheels cost more than yours.

4. You find yourself bragging that your child has never had to be disciplined.

5. People start using words like hero to describe you when you know better.

6. You no longer have friends, just social workers and case managers.

7. When your child outgrows his/her shoes they still look new.

8. You start wondering what a steak would taste like in a smoothie.

9. You go to McDonald's with two kids and only order one happy meal.

10. You hear someone say, God never gives you more than you can handle, and you get the urge to strangle and say, Handle this!

11. Another parent complains about their food budget because their children are snacking so much at 3 o'clock between meals and you say, AM or PM?

12. The average length of words in your vocabulary increases from 5 to 15.

13. The average length of words in your vocabulary returns to 5 as you find yourself increasingly using ANEUs (acronyms nobody else understands).

14. You find yourself up at 3:00 am every morning writing stupid stuff like, 30 Signs You May Have a Severely Disabled Child.

15. It dawns on you one day you know more than your doctor.

16. You're on a first name basis with everyone at your pharmacy.

17. You find yourself bragging how skilled you are at dragging a shopping cart backwards with one hand.

18. Your biggest fear is your child will outlive you.

19. Your second biggest fear is he/she won't.

20. You still get excited about your baby's poops and your baby is now a teenager.

21. You suddenly realize you haven't used the word, babysitter, in years.

22. You know the difference between medicaid and medicare while you're still young.

23. Someone says let's go out to dinner and the first thing you think of is poop and how long it's been.

24. You find yourself doing your grocery shopping after dark when seniors have all gone home so you can find a parking space.

25. Your spouse winks at you with a glint of anticipation saying, let's put the kids to bed early, and you respond, yeah, I'd like to get some sleep too.

26. You begin to wonder if you're invisible.

27. You call 911 and the operator recognizes your voice.

28. A psychologist thinks you're crazy after giving you a word association test because, when he/she says Mickey, you say Button instead of Mouse.

29. As you're being handcuffed and hauled to jail you hear someone say, I was only parked there for a minute.

30. You hear yourself saying, It's OK to fart if someone stares.

Go to Roy's blog, Father of 10 Daughters

photo by Michael Kolster

whiteout

There’s a whiteout beyond the cool glass panes that sets the house aglow. Relentless. Quivering. Frozen. Michael, in his disdain for it, refers to the snow as fallout. Sometimes I can see why—the way the flakes sometimes fall so fast and swirling feels impossibly treacherous, oppressive. I hear a faint ringing in my ears as I sometimes do and I wonder if it’s simply a matter of being human or if it’s just me. Inside I’m somewhere between violet and smoke, a low rumble travels through my bones, my aching head. A string of negativity runs taut from head to toe, its threads seeping out of my pores like garlic. Everything seems to deserve a scowl, and the world, with all of its sounds and words and sights, comes to me in complaints. What am I doing wrong?

It's minus five degrees outside, having warmed up since early this morning. Calvin's relentless grousing is driving me crazy. I've no idea what bothers him so. If I'm not already, I'll be certifiably insane by the end of this winter break.

Some early morning skiers in bright regalia slide their way down the unplowed road past our windows. We can’t get out into it, I think to myself. Can’t feel the sting of a bitter wind that makes noses drip and cheeks flush like berries—a wind I'd happily welcome abrading my face if it meant playing outside with my son. Can’t catch snowflakes on our tongues or form balls of the stuff to toss at each other, can’t create a snowlady with sticks for arms and a pine cone nose. And those beautiful bell-shaped angels made in the shape of a child—don’t even go there.

So we stay inside—sequestered—as snow gathers like lichen on cedar shingles and burdens green bows. We'll swirl in circles for hours in dizzy monotony like those snow flakes do. From somewhere down the street the meaty drone of a snow blower competes with the grinding of Calvin’s teeth and if I close my eyes I can hear myself breathing, can feel my heart skip a bit here and there. And I know, on days like today, I must take one deep breath at a time.

Original version published last December.

friday faves - huck finn

From May 2012.

We had the sky up there, all speckled with stars, and we used to lay on our backs and look up at them, and discuss about whether they was made or only just happened. Jim he allowed they was made, but I allowed they happened; I judged it would have took too long to make so many. Jim said the moon could ‘a’ laid them; well, that looked kind of reasonable, so I didn’t say nothing against it, because I’ve seen a frog lay most as many, so of course it could be done.

—Mark Twain's Huck, from The Adventures of Huckleberry Finn

In recent years I’ve been taken with reading and rereading the classics ... Hemingway’s The Sun Also Rises, F. Scott Fitzgerald’s The Great Gatsby, Nabokov’s Lolita, Harriet Beecher Stowe’s Uncle Tom’s Cabin, Salinger’s The Catcher in the Rye. I love them all. This time through Twain’s The Adventures of Huckleberry Finn, though, I am looking at the characters’ exploits from a much different perspective than when I was a youth.

The other day, after an entire day of wonderfully backbreaking gardening, I washed off my dirt-smudged face, pulled on some cowboy boots, donned my leather jacket and took off on a ride. She started right up with the kind of meaty, gravely purr I’ve quickly come to love. In some ways driving my motorcycle feels liberating, like riding a responsive, obedient horse, bringing her to a gallop with the flick of a wrist—zero to fifty in no time flat.

Cool air rushed up my sleeves as I meandered down Mere Point past impressive granite shelves sprayed with heather and flox, trees caked with lichen, and some apricot-colored buds dotting a pine canopy. The air smelled fresh but of nothing else. Near the end of the road the sky opened up as did the land, and I could see across a clear-cut parcel to the water. At the boat launch I cut the engine and sat quietly gazing across the inlet.

Once the residual buzz of the motor gave way my senses drown in the sounds of chirping birds, waves lapping the shore and the sun on my face. At the end of a long pier two lovers embraced as if they were alone in the world. The pier, with its weathered wooden slats, reminded me of the raft that Huck Finn and Jim floated down the Mississippi river. I thought about how their fantastic journey was as much about forging their companionship as it was about their physical adventure.

I studied the lovers—her pale arms contrasting with his black hair and shirt, their legs disappearing over the side of the pier, perhaps barefoot as I imagined Huck and Jim to be, dipping their toes into the water like I'd done before. The lovers remained as I shut my eyes and imagined Huck and Jim floating, tossing twigs into muddy water, fishing for their breakfast, building campfires, telling tales, getting to know each others realities which were so very different and yet so perfectly matched, not unlike some fathers and sons.

I reminisced about some of my escapades as a young person and the curious friendships I’ve formed over the years. Then I considered, as I’m known to do, that my boy Calvin will never enjoy the luxury of getting into the minds and thoughts of other folks. And then a stream of consciousness overcame me . . .

he’ll never fish from a pier with his dad or build a campfire or sleep by himself under the stars or embrace a lover or tell a story or ride a motorcycle or captain a raft or talk with a friend about the origin of stars or read a book or write a word or cook a meal over hot coals and a flame or swim like a fish in a river or catch a firefly or gallop a horse or forge a friendship like Huck and Jim or the lovers or most anyone in the world or write a work like Samuel Clemens might have thought of doing when he was Calvin’s age.

Then I started up the engine and continued my own little escape up the road not far from the water's edge and under the invisible stars.

Thomas Hart Benton, A Social History of the State of Missouri: Huckleberry Finn (detail of north wall), 1936, Missouri Department of Natural Resources, Missouri State Museum.. From cover of Gerald Graff and James Phelan, Adventures of Huckleberry Finn: A Case Study in Critical Controversy (Boston, Bedford Books, 1995).

the other side of fear

Everything you want is on the other side of fear.

― Jack Canfield

photo by Michael Kolster

uncharted territory

Minus eleven degrees outside. My mood is like the weather—icy, brittle, unforgiving, in need of a major thaw. On this first day of 2014 I wonder what lies ahead.

Yesterday, I picked up Calvin’s next month’s supply of Onfi (clobazam), one of his two antiepileptic drugs. A handwritten note on the bag containing it is a reminder for a pharmacist’s consult. Before speaking with her I already understood what it meant: that any change in dose or a discontinuation of the drug followed by reinitiation can cause a serious if not lethal rash called Stevens-Johnson syndrome.

In bed alone, Michael at a New Year’s Eve party, I’m reminded of the anecdotal evidence that medical marijuana can affect Onfi’s blood levels causing its side effects to increase. I wonder and worry if, when I finally start Calvin on his medical marijuana tincture, he’ll suffer worsened side effects from the Onfi—the dizziness, the drooling, the decreased muscle tone, the irritability. I wonder, too, since benzodiazepines and their relatives can cause respiratory suppression, if he’ll have trouble breathing at night or during a seizure and simply expire.

I’m not going into this green therapy lightly. I’ve done months of research trying to find the right strain of marijuana, the appropriate tincture and the best supplier I can find and trust. I think I am almost there, but when I am, there will be the question of dosing. What is the right dose for a kid like Calvin with his unknown kind of epilepsy? There is no hard and fast protocol. This is uncharted territory for parents and for doctors. Calvin is the first patient his neurologist recommended for the treatment, and it took some convincing before he did.

In the meantime, we had all of our blood drawn this week for what’s called a first tier exome sequencing—a test to search for any underlying genetic cause for Calvin’s seizures. Calvin is, again, charting new territory in that he is his neurologist's first patient to undergo this type of testing, which I'd learned about from a friend about a year ago. There are no guarantees they’ll find something, perhaps won’t even be able to decipher the results since the test reveals more about the nature of the DNA than is currently possible to interpret.

All I can do is to hold out hope, to work on my patience, continue to quest for knowledge, chart new territory and try to melt my frigid mood into something malleable, into something that won’t shatter under the weight of it all.