7.20.2015

refuge

It's Sunday, the clock just struck half past six in the morning and already I'm wishing it were seven p.m., wishing Calvin were snug in bed while we eat dinner with tonight's dear guest, Charlie. It's day seven and Calvin seems to be ramping up to his next seizure. I can tell by his high-pitch screeching and hypercough and the way he is mauling me, scratching my neck and pulling my hair as if to tell me what I know some verbal children with epilepsy say to their mothers as their seizures loom: Mama, make it stop!

I not only worry and despair over my son, but simultaneously feel strong notions of disgust at his manic vocalizations and spastic outbursts, which can endure for hours if not days. These emotions of mine are muddled together with a gnawing sense of guilt that he is the way he is because of something I might have done, even if only the mere fact that I am his mother. Add to the mix pangs of remorse for having not steered him away from the sippy cup he tripped on the other day injuring his foot, and the anger and fear I feel about the benzodiazepine we are trying to wean him from.

In these exasperating moments, which occur often, I must take refuge or I'll lose my cool, which isn't really a cool but rather a silent tension strung through my body, stitching ugly furls into my brow and, like a piano wire, if struck too hard might just snap.

Refuge. Mine is the garden. Wrapped in a blue robe, I kick off my ratty fleece slippers and don rubber boots caked with yesterday's dirt. I take as companions a cup of coffee and our dog, Nellie, making sure to shut the door behind me so that Calvin's rantings are, at the very least, muffled. Plodding through a dewy lawn sprinkled with white clover, my boots leave dark swaths in their wake as if to exclaim, like knifes carving into bark, we were here, but our presence is fleeting. Then, one by one, I step on stones through a corral of fragrant azaleas which fill my nostrils with candy spice. The Milky Way dogwood, with its hundreds of creamy moons, smiles down on me as I stand under a silver birch and, if I wanted to, I could touch a pair of cardinals nesting in the burning bush I've lovingly pruned into a Seussian orb.

Refuge.

Beyond the magnolia, whose few leaves have already begun to bronze, two perennial beds brim with yellow and rose glowing lilies, lipstick bee balm crowns, sprays of white feverfew, swords of purple salvia and flaming pink and peach echinacea suns whose spiky golden cores fat bumble bees orbit, land and mine.

By this time, I've forgotten my crazy kid and his unnerving antics, having drenched my senses in my own backyard reef amidst a sea of greens, where my body can be calm, my mind clear and somewhat free.

Photo by Michael Kolster

7.17.2015

morse mountain

A white sky belied the warm morning as Calvin and I rode third in a caravan hugging the winding road to Morse Mountain reserve. There, a pod of fifth-graders spilled out onto the dirt parking lot and gathered around their teacher, Mr. Shea. He introduced two new children to the class, one of them being Calvin, who sat in a stroller chewing his blue plastic football, at times shrieking and laughing.

“Please say hello to your new classmates,” he asked of them.

Only slightly nervous, I gazed into the crowd of children dressed in brightly colored garb and ready to embark on their midsummer expedition. They had turned their attention toward us and from the center of the solemn mob a cute boy sprang, approached Calvin smiling and, leaning over with his hands pressed together as if in prayer, said, “Hi, Calvin!” before waving to him. Weak in the knees due to the boy's gesture, I thanked him for his unreserved kindness, then several other students echoed the greeting to my son who is incapable of saying hello or waving.

“Calvin hears you, he just won't respond, but he knows you are there,” I assured them, patting my boy on the head.

After patiently listening to the park rules, the group set out with their backpacks, bug spray and water bottles while I remained to change a wet diaper in the back of the car.

“I’ll catch up!” I called to the stragglers who had turned to wait for us.

Our old three-wheel stroller handled the path with little trouble, bouncing a cackling Calvin along what had over years become more rock and rut than pavement, as if a dry river bed. It took no time for me to break into a sweat pushing sixty pounds up a rough hill through muggy air, but I soon caught up to the back of the happy flock.

Trailing them through the wooded serenity, I felt grateful Mr. Shea had included us in the trek, just as I'd been grateful when he—being one of few teachers to do so—invited me into his classroom to tell his students about Calvin and about epilepsy. I felt grateful to get out of the house with my gimpy boy, a jaunt I'd likely never consider doing on my own. I felt grateful for the worry-free feeling afforded me by the cannabis oil which has kept all but one of Calvin's daytime grand mal seizures at bay for over 300 days. My buddy Kim was there with her daughter Zoe, so I enjoyed the comfort and company of a woman who seems to appreciate my crude sense of humor. A couple of the other mothers who went as chaperons, Beth and Becky, introduced themselves to me, as well as the grandmother of the sweet boy who had first said hello to Calvin. Becky and her daughter Peyton paid great attention to me and Calvin and I was sad to hear that they'd be moving away. All of these things made me glad I hadn't chickened out.

Twenty minutes into the hike and with a little effort, I hustled the stroller up a steep hill to the top of Morse Mountain—really more like a large hill—for a view of the salt marsh blanketed in a fog obscuring the open ocean. The kids gathered around Calvin’s stroller for a photograph before heading back down toward the beach. At the fork in the road I veered left to make my way back to our car and home in time for Calvin’s lunch and seizure meds. Having said goodbye and left the group behind, the walk was quiet except for the buzz of mosquitos and the haunting song of a hermit thrush. Even Calvin was calm. Relaxed and unwound on the day after Calvin had hurt his foot, I felt myself melting into the backdrop of salt marsh and sea, casting my worries into the breeze, if only for a moment.

Before long we were back at the parking lot where Don, the attendant, was braiding dreamcatchers, bracelets, key chains, bags and necklaces made with found lobster trap netting, bait bags, rope, driftwood, feathers and shells. He and I had a nice visit before I had to feed Calvin a snack. He told me a little about his craft and shared with me his website, Sagadahoc Tribal Arts.

“Sorry, Don, but I’ve got to run the car for a bit while I feed Calvin," explaining that the heat and mosquitos were too bad to keep the windows up without the air conditioning.

“No problem,” he called, and went back to making dreamcatchers, just as the sun began burning through the morning haze.


7.15.2015

platitudes

They say it gets better. It doesn’t.

They say God doesn’t give you more than you can handle. They’re wrong.

They say everything happens for a reason. Things don’t.

These are the thoughts that pinged around in my skull when, the day after a three-to-five-minute grand mal seizure followed by twelve straight hours of partial seizures—at least one every hour—Calvin tripped on his sippy cup, which he’d tossed onto the hardwood floor, and hurt his leg. He cried and cried cradled in my arms while I told him I was sorry that I hadn’t caught him, hadn’t steered him away from the cup he hadn’t seen but that I had.

Eventually, he stopped crying, but it was soon clear that he’d hurt himself badly enough that he avoided putting weight on his left leg, turning red-faced and reaching out for me after only a few steps.

“Fuck!” I cried, hot tears burning my eyes, knowing I could have helped to avoid the injury and wondering how in the hell he’d be able to get around if he needed a cast or a special boot. He has enough trouble walking on his own as it is, I thought.

Calvin’s Superdoc squeezed him in between patients, examined his leg, noting the same slight puffiness to his foot that I had seen, then sent him to get x-rays. The radiologist saw no breaks, though it’s possible a hairline fracture, which might not reveal itself until the healing process begins, is the culprit.

Racked with guilt and dreading a bad outcome, I was restless worrying about my child, if he was hurting, how he’d get around, if we’d injure ourselves carrying his fifty-plus pounds of slack weight up and down the stairs. Michael assuaged my angst with soothing words of optimism and a shot and a half of bourbon on the rocks. He expressed his awe, at the same time reminding me, that Calvin, who is eleven and legally blind times five, has cerebral palsy, is missing a significant amount of the white matter in his brain, is non-verbal, still in diapers, has low muscle tone, recurrent seizures, was on a special diet that can cause osteoporosis and is on medications that can affect bone density as well as cause dizziness, lethargy and poor coordination—just for starters—has in the past tumbled down the stairs, fallen flat on his face, his elbows, his knees, his hips and square on the back of his head on a hard floor but has never broken a bone or hurt himself very badly.

Still, I was aching for my child and wallowing in self-pity. Then I read this short Facebook post from my friend Lidia:

really good things are going to happen to you. really hard things are going to happen to you. feel both all the way through, because they will each change you radically. then remember there is a deeper wellspring you need to replenish, the you in between life events, the you born of water.


I felt as if she’d written it for me, right then and there—perhaps she had—and reading it gave me great solace knowing she is right, thankful she isn't one to fling thoughtless platitudes.

Even so, this morning, I woke up in the grips of despair again only to view this harrowing short Op-Doc from the New York Times about the Nubanese ethnic cleansing in Sudan. Watching it smacked me back into the the reality that, even with a kid like Calvin, we are fortunate and should be so incredibly grateful for what we do have and for the horrors we don’t have to deal with first hand. There are so many wrongs in the world which, with my small voice, I can try to right, rather than whining about my life’s little incidents which, in the scheme of things, don’t amount to much. Then, I recalled the platitudes I was considering after Calvin tripped, and thought:

these innocent people of sudan, it doesn’t really get any worse. tell me god hasn’t given them more than they can handle, getting bombed out in a cobra-infested cave or a dirt hole, seeing their children riddled with shrapnel or set on fire, seeing their children's flesh burned off, hearing them screaming for help, seeing them burn to death or die later from tetanus, from maggots burrowing into their charred bodies. try to tell me there is some grand design in that. just try.

Platitudes. Though perhaps well intended, like salt in a wound, they can burn, because sometimes, life does give you more than you can handle and often, things don't get better and for no good reason at all.

A young Sudanese refugee cries for his mother. Photo by Stephen Morrison/EPA/Corbis

7.13.2015

the impossibility of it all

In a twisted sort of way, Saturday morning’s seizure brought a morsel of relief, albeit fleeting, to my child who was bat shit crazy for two solid days. Like the mounting tension between wrestling tectonic plates, the pressure in Calvin's brain seems to build until it quakes, and in the temblor's wake we often find relative calm.

The previous morning, we’d tested the waters of our favorite cafe in the next town over. We’ve been weekend regulars there since Calvin was a tot, ducking in and clumsily weaving our way between clusters of small, round tables and wooden chairs, overstuffed sofas and flocks of coffee lovers, many who recognize us and we them, mostly because of Calvin.

“I’ll have an iced coffee,” I said to a familiar smiling barista.

At the table behind me, Calvin spilled his cup of salted cucumber bites, then pierced the calm with his sonic siren shriek, not once, but twice.

“Okay Kid, one more time and we’re outta here,” Michael quietly warned our flailing child, who at times has little control over himself in the grip of benzodiazepine addiction and withdrawal, especially in the path of an imminent seizure.

Seconds later we were packing up only minutes after we’d arrived, a scene we’ve played far too many times before. Michael whisked our manic kid outside. Flustered, I gathered Calvin’s containers of diced fruit and sandwich, his sippy cup, backpack, bib and rag, Michael’s coffee and my half-eaten cinnamon roll.

“Christy,” the cafe's owner, Tonnie, said as she approached, “don’t ever feel like you have to leave because of Calvin.” She went on to say that it’s not like he’s some kid who is simply misbehaving. “He’s part of our community.”

We hugged each other and I thanked her and told her how much her words meant to me. As I turned to go, I began to weep. Outside, I struggled one-handed to untie Nellie from a sidewalk tree when Maria, a fellow patron, came out after having seen me crying.

“Can I give you a hug?” she offered, before wrapping her thin arms around me, her delicate frame belying her soundness.

She, too, told me that Calvin was part of the Cafe Creme community and that we didn’t need to worry about his behavior.

“It must be so hard,” said Maria, once a stranger, who has watched Calvin grow up amidst the crowded cafe, no doubt having seen him on days leading up to seizures and on days in the thralls of benzodiazepine withdrawal.
“Relentless,” I added, mentioning his recent string of manic outbursts and the seizure no doubt on its way.

Maria helped me clip Nellie to the leash and we said our goodbyes. Crossing the street I spotted Michael and Calvin strolling along the brick sidewalk beside a neat row of shops. I stopped, sat on a bench, tipped my head back and closed my eyes for a spell, wishing we lived a different reality.

Saturday morning's seizure didn't yield the usual long-term calm, and that night Calvin had several brief, partial seizures every hour after midnight until afternoon on Sunday. An extra dose of THCA cannabis oil and a dose of rectal Valium did nothing the quell the storms in his brain.

As I write this, Michael and I are holding vigil in Calvin's darkened room, Michael in bed beside him while I perch on the changing table in what feels like Calvin's mini hospital. Inside the air is still and close. Outside the day is gloriously warm and sunny, not too humid. I think to myself that on a day like today, which is headed into the nineties, we should be taking our eleven-year-old son to Pleasant Pond to go swimming or for a walk with Nellie in the cool of the woods and perhaps to Cote's red shack for an ice cream cone. But that is the life which one must give up when parenting a chronically ill, severely disabled child who, most regrettably, is in withdrawal from a drug he probably never should have been prescribed and whose dose never should have gone as high as it did, habituation and evenutal loss of seizure control one of its many heinous downsides.

Instead, as I watch my son sleep between fits of seizures, retching and painful tears and, with the shade drawn against the sun, I dream—through the impossibility of it all—of what one day might be mine again, but without really knowing how.

Calvin, yesterday, after we moved him into our room

7.12.2015

hitched in harpswell

I'm not sure if I've ever had a dry eye at a wedding, and most definitely not when dear friends are the ones getting hitched, and the minister, of sorts, happens to be my husband. I say, of sorts, because Michael, who like me is not religious, got ordained online with The Universal Life Church Monastery, which promotes freedom of religion and the blissful idea that we are all children of the same universe. 

Yesterday, an eighty-some-odd degree idyllic summer day, our dear friends Meggan and Bob, alongside their daughters Nola and Lydia, got hitched atop a grassy hillside that spills into a protected cove of salty sea in Harpswell, Maine. There was a keg of beer, bride-and-groom margaritas, a cornhole game, a mob of babbling babies bouncing on their mothers' hips, fancy hats, lipstick kisses, wildflower bouquets, barbecued ribs and thighs, salads and sides, a sheet of red velvet cake and music and, of course, the happy couple.

After the guests gathered, Michael started by reading a beautiful passage from the preface of Walt Whitman's Leaves of Grass before marrying Bob and Meggan, then enlisted the loving and exuberant crowd of friends and family to join in the declaration of their marriage. We ended with three heartfelt, hip, hip, horrays! And though Michael was its minister, it was a secular ceremony, short and sweet and at times funny. I wept throughout without wiping my eyes, letting my tears dry in the afternoon sun, thankful that, this time, they were tears of happiness for our much loved friends.

7.11.2015

today

Today, my brother Scott forwarded an email to me. On first glance, it appeared to have been one of those chain emails that I loathe receiving, the ones that, at the end, tell you that you must forward it to others and something good will happen to you. But it was not one of those. Rather, it was a list of incidents relating people's humanity, empathy, gratitude and grace, and what made it even nicer for me was its absence of any mention of God; it was simply an account of the amazing creatures we can be if we are open, loving and mindful of others.

Thank you, Scott, for knowing that this was something I'd appreciate, even though I'm often cynical and despondent, and for sending it on.

Here it is for the rest of you. Enjoy:

Today, I interviewed my grandmother for part of a research paper I'm working on for my Psychology class. When I asked her to define success in her own words, she said, "Success is when you look back at your life and the memories make you smile."
 

Today, I asked my mentor - a very successful business man in his 70s- what his top 3 tips are for success. He smiled and said, "Read something no one else is reading, think something no one else is thinking, and do something no one else is doing."

Today, after a 72 hour shift at the fire station, a woman ran up to me at the grocery store and gave me a hug. When I tensed up, she realized I didn't recognize her. She let go with tears of joy in her eyes and the most sincere smile and said, "On 9-11-2001, you carried me out of the World Trade Center."
 

Today, after I watched my dog get run over by a car, I sat on the side of the road holding him and crying. And just before he died, he licked the tears off my face.

Today at 7AM, I woke up feeling ill, but decided I needed the money, so I went into work. At 3PM I got laid off. On my drive home I got a flat tire. When I went into the trunk for the spare, it was flat too. A man in a BMW pulled over, gave me a ride, we chatted, and then he offered me a job. I start tomorrow.

Today, as my father, three brothers, and two sisters stood around my mother's hospital bed, my mother uttered her last coherent words before she died. She simply said, "I feel so loved right now. We should have gotten together like this more often."

Today, I kissed my dad on the forehead as he passed away in a small hospital bed. About 5 seconds after he passed, I realized it was the first time I had given him a kiss since I was a little boy.

Today, in the cutest voice, my 8-year-old daughter asked me to start recycling. I chuckled and asked, "Why?" She replied, "So you can help me save the planet." I chuckled again and asked, "And why do you want to save the planet?"  " Because that's where I keep all my stuff," she said.

Today, when I witnessed a 27-year-old breast cancer patient laughing hysterically at her
2-year-old daughter's antics, I suddenly realized that I need to stop complaining about my life and start celebrating it again.


Today, a boy in a wheelchair saw me desperately struggling on crutches with my broken leg and offered to carry my backpack and books for me. He helped me all the way across campus to my class and as he was leaving he said, "I hope you feel better soon."

Today, I was traveling in Kenya and I met a refugee from Zimbabwe. He said he hadn't eaten anything in over 3 days and looked extremely skinny and unhealthy. Then my friend offered him the rest of the sandwich he was eating. The first thing the man said was, "We can share it."