7.31.2013

spreading the light

There are only two ways of spreading the light—to be the candle or the mirror that reflects it.

—Edith Wharton

photo by Ann Anderson

7.30.2013

down on paper

I soothe my conscience now with the thought that it is better for hard words to be on paper than that Mummy should carry them in her heart.

 —Anne Frank

These words come to me when I write about feeling down, hopeless, lonely, frustrated and grief-stricken. And though I sometimes wonder if what I write in this blog is too hard for people to bear or to understand, I realize that writing it down and sharing it is something that I must do for myself and perhaps, too, for others.

I often wonder if the blood and marrow cancer that began consuming my father when he was just sixty-five, then took his life five years later after a hard fought battle, might have had something to do with having held stuff inside for so many years—his fears, his regrets, his failures, his frustrations, his emotions. At times I have little doubt, as if the mix of those feelings and thoughts festered and boiled inside the body that contained them and eventually became his demise.

So when I find myself, like this morning, caving under the weight of a wordless, irritable child who is headachy or nauseous or frustrated, who has terrible balance and thus requires me to catch him at a moment's notice when he trips and careens and collapses while waiting impatiently for a bus that is late, then I snap at his aide and condescend to the driver and slam the door and break down into tears and gripe at my husband and scold Rudy the dog and scowl at passing drivers and hiss at gnats and stomp around an empty house then, in silence, I realize that I am getting some nasty stuff out. And so I take a deep breath and get it down on "paper" so that I might not get cancer, so I can clearly see my tasks, which are sometimes heavy, so I can forgive myself, so I can apologize to the aide and the bus driver, so I can greet my husband with kindness and my son with patience and the world, perhaps, with a smile.

7.29.2013

river of glass

It was the perfect morning for a leisurely trip north along the Androscoggin river to Rolly’s diner. The sky had clouded up and hinted at rain, but the still in the air turned the river to glass, and in it reflected a beautiful dark band of pines and maples and the silvery sky beyond.

As we pulled into the parking lot we could see that the line leading into the diner was long, so I took my place while Michael walked Calvin around patting the car as he is wont to do. A jolly, middle-aged man in front of me saw Calvin and said, "Just like a boy," and he smiled knowingly, asked Calvin's age and, when I told him, hinted at how Michael and I had our hands full, then he slipped into the crowded diner and was lost. What a nice man, I thought, and wondered if I'd ever see him again.

Eventually, we were seated in the back corner of the packed restaurant. In his infant high chair Calvin began banging the hell out of the table, arching back and pitching forward, at times cuffing me with his flailing fists. I managed to eyeball the menu, order some crepes and sip my coffee while at the same time feeding Calvin bits of fruit, pieces of breakfast sausage and cut-up peanut butter and jelly sandwich, all of which I’d brought from home.

Our server soon sided up to our table, leaned in and asked, "What's your name?" clearly understanding that Calvin could not speak. She crouched down right next to him and said, "Hello, my name is Chris," and she didn’t flinch when he reached over to give her a slobbery hug.

But despite our kind reception, breakfast was a farce. And though he was relatively quiet, Calvin yanked my hair and banged the table and stood up in the high chair, all the while flailing, thus we had trouble trying to feed ourselves. My somber mood became foul, so as soon as Michael finished his egg sub he whisked Calvin out and said, “I’ll walk him around ... have a good time,” then he tossed me a twenty to pay the bill.

I’d lost my appetite by then, but attempted a few bites then pushed the last bit of food around the plate with my fork. There, I sat alone, completely dejected, facing an entire room full of diners, some sitting gloriously child-free at the bar to my left and others in happy groups at close-knit tables. My chest tightened and my throat began to thicken. With a furrowed brow tears welled up in my eyes, but I held it together as best I could and dolefully gathered our things.

Chris returned and could plainly see my sorrow. She seemed to understand and began explaining that she had worked at the local schools watching children while the teachers took their breaks. I told her about Calvin’s epilepsy, about the drugs that cause him to be so hyper and the previous ones that had made him into a zombie. She reached in and gave me a hug, handed me her number and said to call her if I ever needed a break. I gave her one of my cards while quickly mentioning the blog, told her to search for "Rolly's Diner" to find a couple of posts I'd written about the place. “I’ll follow you,” she said in a compassionate voice, and until that moment I’d thought that our Rolly’s experience was going to be a bust.

That night I received a comment to a past blog post, rolly's diner, in which I tell how an anonymous person paid for our breakfast. The comment was from Chris. Among many kind things she wrote:

I know who paid for your breakfast that day, and I will now tell you, it was an 11 year old boy who recently lost his mom to cancer, and every now and then, when they went out to eat, his mom would pay for some unsuspecting soul's breakfast just to make their day, and now Jacob does the same thing to keep the memory of his mom alive.

Reading this I cried, wondered if I'd seen the boy that day who had paid for our meal. I'd thought for sure it had been one of the elderly patrons. And as I imagined these Rolly's Diner stories come full circle—the interconnectedness of things—I thought of the river of glass that I'd seen that morning and realized that, just like it, we are all a sublime reflection of each other.

photo by Michael Kolster

7.28.2013

names and faces

Written last August.
 
It’s been a while since I’ve woken up to the horrific sound of Calvin having a seizure. The shriek is hard to describe, and isn’t always the same from one seizure to the next except for the fact that it scares the holy crap out of me and I never—ever—get used to it. The sound he makes—that the seizure makes—is somewhere between a desperate cry for help and a blood-curdling scream. At one-thirty this morning, in Michael’s absence, that sound startled me awake. I threw off the covers and ran. Peering into Calvin’s bed through the netted safety canopy, my heart a steely piston knocking in my chest, I could see that he was still sleeping soundly when a little chortle escaped his lips. He had simply been dreaming.

Still, I found it difficult to fall back to sleep. Curled up in a ball I gazed out at the black pines silhouetted against a stone-gray sky. I breathed shallowly so that I could listen for Calvin, for the swooshing of his sheets, the telltale clicking and smacking of a partial seizure rolling into a tonic-clonic one—the kind I fear most—though I detected nothing but his own shallow breaths.

I started thinking about all of the children I know who suffer repeated seizures: of little Leland so soft and mild who, since a mosquito bite infected him with meningitis when he was just twelve days old, has been having several dozen seizures nearly every day; of my friend Emily’s beloved Ronan who is seizing all day and all night because of the wrath of Tay-Sachs disease; of Margot, with her dark lashes and curls whose seizures ebb and flow from day to day but never go away; of beautiful Savannah and Sophie, both in their late teens who—for years now—have been drowning in a slough of drugs and yet have had tens of thousands of seizures with no end in sight; of Lisbeth and Olivia and Sammy and Jack and Matthew and Luella and Elijah and Penny and Franny and Lily and Zach. I thought of Kevin, who drowned at the tender age of sixteen because of a seizure, and of the young sons who’ve died from SUDEP and of the countless other children whose parents have reached out and told me of the suffering their kids have needlessly endured at the hand of this malady called epilepsy. I know these parents live with the same nightmares—many much worse—as we do.

I fell asleep tumbling so many names and faces in dark circles and loops through my mind. And I awoke sleeping next to Calvin in his bed keenly aware that today, as in every other, I must tell the world about the scourge of epilepsy, simply because I can.

Warning: the video below may be difficult for some to watch, though I encourage you to do so, so that you better understand the plight of epilepsy on our children.

                           

7.27.2013

lunch on the grass

We sat in white plastic chairs on the front lawn facing a crescent of maples and pines that jumped from our side of the road to the other. It was good for me to get out of the house and it had been too long since I'd seen my friend, John. And although it was just a few days ago, I don’t remember what color the sky was, the grass was so green.

In between bites of smoked turkey salad on artisanal bread we sipped birch beer in fired clay cups. We spoke of old friends and travel and he told me how he landed in Maine, how he had as a boy hiked Mt. Katahdin with his father and had years later laid his dad’s ashes there.

“May I ask ... did you ever consider adoption?” he said, and I paused at the question, at its warmth, its innocent and delicate curiosity. I went on to explain that, yes, we had from time to time. But it was never right. Never right because we were overwhelmed with the grief of our child’s unhealthy brain and limp body. Never right because then we found ourselves in and out of the hospital. Never right because of the epilepsy that consumed us. Never right because we didn’t have enough time, enough energy, enough focus for a second child. Never right because we doubted whether it’d be fair to either child. Never right because we wanted to give Calvin our all so that he could reach his full potential, so that he could one day, perhaps, walk by himself and maybe even talk.

But the question lingered in my mind as we licked the crumbs from our plates and ate the last bits of cheese. And as I looked into his watery eyes while we considered dessert, I felt the hollow in my heart, the hollow left by Calvin’s presence and the hollow left by the healthy child we never had. I wondered if he noticed my voice quaver, wondered if he noticed the pools forming in my eyes, this kind-of-old, kind-of-new friend of mine who had never seen me cry.

We walked to my car and in his embrace I felt the core strength of a young man now in his twilight years. I kept my arm around his shoulder, noticed his nubby sweater and worn leather shoes that had no doubt taken him countless times over the ridge to his maple grove or to his pond just down the road.

When I’d arrived he’d given me a folded up string of Tibetan prayer flags, told me that when the wind blows them a prayer is said. “You don’t have to do anything,” he added, and we spoke of the vast, expanding universe where nothing is certain but that it’s there and we are discovering it. And we leaned on the counter preparing our lunches, crunching raw string beans then playfully tossing the stems out an open window.

photo by Michael Kolster

7.26.2013

friday faves - first steps (video)

It occurred to me this morning (strange that I don’t remember it having occurred to me before) that Calvin, who is now nearly nine and a half, has never taken independent steps without being under the influence of powerful, sedative, anticonvulsant drugs. His epilepsy diagnosis came two months after his second birthday at which time, because of his other neurological deficits, we were still holding his hands to help him along, not unlike most parents do with their infants.

I have a few videos of some of Calvin’s first steps in the summer after his second birthday. In them, he teeters and tips as if on a ship in the high seas. He catches and rights himself, but over corrects and teeters to the opposite side. At that point in time he was taking more than his fair share of Leviteracetam (Keppra) aimed at thwarting his seizures, albeit unsuccessfully.

All anticonvulsant medications are sedatives, even the ones that provoke paradoxical hyperactivity and insomnia in some children. They all can cause dizziness and lack of coordination. Most cause lethargy, weakness, gait ataxia, visual disturbances and nausea. I could fill pages just listing the side effects from these drugs that the pharmaceutical industry makes billions selling.

It’s hard to say, but my gut tells me that Calvin would be walking independently if it were not for his years’ long, sustained and massive intake of these chemicals. He still might have trouble negotiating stairs and rough terrain due to his poor vision and muscle tone, but my best guess is that his balance would improve if he weren’t dizzy all of the time or perhaps experiencing vertigo, another side effect of some of the drugs. It makes me ill to think of the millions of the world's parents who must feed their tiny babies, toddlers and tykes unknown quantities of multiple anticonvulsant narcotics, barbiturates and benzodiazepines with few other viable choices beyond letting them seize uncontrollably until they might eventually expire.

I dream about stripping Calvin of all the drugs, detoxifying his fragile system, getting him back to the place where a little boy should be, out from under the wicked and iron thumb of pharmaceuticals. The only way possible, except for the highly unlikely chance of outgrowing his seizure disorder or the possibility that medical marijuana could stop his seizures, is to find a cure. But to do that, we need a major leg up in terms of awareness, advocacy and funding—steps that Calvin will never be able to take on his own, but that I can. You can help, too: http://www.calvinscure.com

                           

7.25.2013

the morning after

It’s the morning after Calvin had another evening seizure. Walking Rudy the dog through the woods I feel a chill as if it were already fall. And with that chill I feel a sadness creep over me, a lump in my throat, a stone in my heart and a sea in my gut. Will they ever end? I think, as tears nearly spill onto my cheeks. Will we ever beat this thing—Calvin and I? And I step over knotted roots which desperately clutch at the earth, some naked, raw, exposed. I think of my little boy, so innocent and vulnerable to the electric charges that snake through his brain like thunderbolts. As I emerge from the woods, the sky begins to clear and I can’t decide if I welcome the glaring sun or not.

photo by Michael Kolster

7.24.2013

parallel universe

Last night we celebrated our two year anniversary. It’s been that long since Michael and I first met the young couple at an ice cream shack in the next town over. I’d seen their son, Jacob, as I passed by their car with my fist wrapped around a melting cone. His eyes met mine and at that moment I knew that he was an extraordinary boy, a boy not unlike Calvin.

I was hesitant to approach the family, didn’t want to intrude, wasn’t sure they’d appreciate my gumption. But Michael encouraged me, and I’m glad he did. They met us with open arms from the moment I mentioned how I thought our son Calvin might have a lot in common with their boy Jacob.

Since that first encounter, we’ve shared stories and holidays and jokes and meals and tears and frustrations and worries and fears and hopes and dreams. And unlike many parents of disabled children—yet like us—Jacob is their only child. And so we find our universes parallel to a degree that—while not exact—eclipses levels of understanding we might share with others. I can only describe it as a kind of visceral empathy. In short, they get us, and they get our situation. We could perhaps finish each other's sentences, read each other's minds, know each other's fears, anticipate each other's reactions.

Once, I was brought to tears when Luke responded to a blog I posted called, enough. He wrote, I feel you sister.

Perhaps, though, as much as having similar experiences with our children who cannot talk or walk well, who may not develop beyond the minds of toddlers, is that we share so much in common with Luke and Sarah outside of our boys. We see the world in vastly similar ways. We love to eat the same kinds of foods, drink the same kinds of drinks. We think progressively, creatively. We share a common work ethic, which is to regularly bust our asses in whatever we do. We delight in the same goofy sense of humor and respectfully allow ourselves—and each other—to wallow in our darkest emotions. We love each other. We are there for each other. We are brothers and sisters in this crazy, upside-down, beautiful parallel universe.

7.23.2013

conviction

If you hear a voice within you say, "you cannot paint," then by all means paint, and that voice will be silenced.

—Vincent Van Gogh

Vincent Van Gogh, (1853 - 1890)

7.22.2013

different, not less

He can’t hold a pencil or point to an object or open a bag or roll a toy car or unwrap a present or carry a knapsack or brush his teeth or feed himself with a spoon or wipe his mouth with a napkin or push a grocery cart by himself. He can’t pour himself a drink or drink from an open cup or take a bite out of a sandwich. He can’t put on his glasses or page through a book or carry an object or set down his sippy cup or hold a cookie or pet Rudy the dog or wash his hands or use the toilet or sit safely in a chair.

And he’s nine.

He can’t blow a whistle or throw a ball or sit in a wagon or fly a kite or launch a balsa wood airplane or build a lego house or work on a puzzle or fold a paper plane or roll a pair of dice or play a toy piano or chalk up a sidewalk or collect shells on the beach or pump a swing with his legs or count the cards in a deck.

And he’s nine.

He can’t walk by himself or dance a jig or hum a tune or take a shower or sleep in an open bed or pull up his pants or tie his shoes or play a sport or swim a lap or ride a bike or jump a rope or kick a ball or run through a sprinkler or wade in the ocean or skip rocks in a lake or stick his tongue out to lick an ice cream cone or climb a tree or chew a stick of gum or pick berries by the roadside or write a story or play with any toy appropriately, beyond a baby's rattle.

And he’s nine.

He can’t tell me that his throat is sore or that his ear hurts or that he has a headache or a cramp or a growing pain or that he’s nauseous because of the medicine or that he’s too hot or too cold or sad or frustrated or dizzy or hungry or thirsty or tired or bored or scared. He can’t tell me his tooth is about to come out or that he has a splinter or that he stubbed his toe or bit his tongue or that his shoes are too tight or his diaper is too wet or that he had a bad dream or that he’s about to have a seizure.

And he’s nine.

He can’t wish on a star or blow out a candle or tell me a secret or ask his dad why the sky is blue or pick a flower or describe what he sees in the clouds or ask me why I'm sad or tell us what he wants to be when he grows up or what his favorite color is or what he did in class or who he’s smitten with at school.

And he’s nine.

But he can sign for the word hug and he can hug for hours and his smile is like a handful of diamonds and his skin is of rose petals and his giggles fill me with joy and he doesn’t have a malicious bone in his body and he is pleased by the simplest of things and he wants for almost nothing and he doesn't get mad and he endures so much pain and he doesn't know greed or envy or hate and he lives in the moment and sometimes he looks into my eyes and I know that he loves us without saying a word.

Yes, Calvin is nine. And he is different, though not less.

photo by Connie Kolster

7.21.2013

wishes

I wish I had a ton of money so I could give it away. I’d give it to researchers to find a cure for Epilepsy and Cancer and Alzheimer’s and other diseases. I’d give it to folks who work too hard and still don’t have enough to eat or time to spend with their kids. I’d give it to improve schools and teachers' salaries and to students to pay for their college tuition. I’d give it to organizations to fund free public art, music, theater and dance. I’d give it to promote civil rights.

If I could do anything, I’d want to be a doctor helping little kids get better. I’d want to explore the universe. I’d want to be a musician playing to crowds for free. I’d want to write books that could change people's lives and outlook. I’d want to make folks laugh and come together. I’d want to take disadvantaged kids and their families to places they’ve never been—perhaps the ocean, the mountains, the Grand Canyon, Yosemite.

If I could simply wish anything into reality for Calvin I would wish things that I already wish every single day. I wish Calvin's seizures would end and that he could stop having to take medicine. I wish Calvin could walk and talk and run and play with other kids. I wish he could feed himself and eat anything he wanted. I wish I could teach Calvin about the world, about our beautiful universe, about love, compassion, broad-mindedness and generosity. I wish Calvin could go fishing with his dad. I wish he could know the joy of a picnic by the sea or a frolic in the snow. I wish he could make art by himself. And I wish others would love him, which of course, has already come true.

From December 2010.

photo by Michael Kolster

7.20.2013

in the wind coming off of the lake

In the wind coming off of the lake I cried, but in his embrace, the tepid water lapping at our necks, my sobs turned into laughter. I told him not to make me laugh, for I wanted to feel my despair over our sick child, our child who has been exhibiting signs of pain or discomfort or sadness or frustration or all of the above, but who can’t tell us. And I can’t fix it. And it’s been going on for years, since before he was born when the white matter in his brain didn’t fully form, or so it seems.

In the wind coming off of the lake I laid on a towel in the shade of maples turning the silvery backs of their leaves to the sun. I looked up to the sky with its clouds breaking into gauzy pieces and remembered my childhood days such as this one, and somehow felt sad. Did I have a happy childhood? I asked myself. I’d always thought so but just then, looking in on it—back on it—with more than a twinge of blues, I wasn’t sure.

In the wind coming off of the lake I worried about Calvin back at home in the humid heat of late afternoon, in the stillness of town, and I feared a seizure. He’s due, I thought, then I realized that there was nothing I could do and he’d probably come out of it and not have to go to the hospital and he’d probably survive. “But I just don’t want him to have any more,” I said to Michael, and he understood me like the trees understand the wind, like the shore understands the waves, and that knowledge rocked me like a baby, brought me from the glaring sky back down to the ground on which I rested my head knowing that it wouldn’t give way.

7.19.2013

friday faves - in the bedroom

At times it smells faintly of urine, or of feces in the seconds after tossing a tightly wound diaper into the small garbage can. At others it's talc, when I've crop dusted the blue area rug with absorbent fountains of powder squeezed from a white plastic bottle. It’s somewhat small and, except for the fact that it has its own closet (albeit without a door) it barely passes as a bedroom since Michael and I must pass through it to get to ours. In the middle of the night when I'm up repositioning Calvin, at times I can hear the faint scratching of some insidious animal rummaging around in the space under the eve that hangs over his bed. It’s a disturbing sound, not only for the knowledge that vermin are lurking mere inches away, but because I sometimes mistake their scraping for the sounds of Calvin’s nocturnal seizures.

On a built-in bookcase that hangs between those eves stands a group of framed black and white photos of Calvin’s relatives, none of whom he’ll ever know existed: my dad, my mom, my great aunt, my grandmother and grandfather and one of me with my dad when I was about two. In the photo capturing my mother as a beautiful co-ed, she peers through a clean crack in the glass. Dust grows on the photos like moss on a shingle. There are no books—most having found new homes on other kids' shelves since Calvin can't sit still to page through even the shortest of stories because the seizure drugs make him hyper. In a frozen tailspin, a balsa wood airplane, that Calvin will never play with, leans against the photo of my mother. Above it, slouching on top of the bookcase are some forgotten stuffed animals given to Calvin when he was a tot. He doesn’t appreciate plush, at least not yet, so we’ve regifted an arc's worth over the years. I’ve kept the powder-blue teddy bear that Calvin got from my mother when he was in the NICU—the stitches in my belly still tender and numb—and the green Ugly Doll, my favorite odd body—a misfit—but adorable, just like my boy.

Calvin’s massive SleepSafe bed, complete with memory-foam mattress, head and foot articulation and safety panels, takes up much of the space. We’ve tented it with an old hammock suspended from a hook screwed into the bookcase. It stretches over the stocky bedposts, then is anchored by two ropes looping over the metal locks on each outside caster so that Calvin can’t fall out. Getting him in and out requires doing and undoing the apparatus each time, plus raising and lowering, locking and unlocking the panel. I’ve placed a little wooden footstool next to the bed so at night I can unloop one side—without lowering the panel—and reach in under the netting to give Calvin water or to move him. The safety panel is nicely padded, a job done by our friend, Joe, who makes custom boat cushions for a living. The rest of the bed is covered in thick layers of blankets and quilts with an overstuffed pillow at one end to buffer head butts or falls. Calvin seems to like his bed. It’s his safe place—his man cave—where he can move around and bite his plastic football and play with his feet to his heart's content without hurting himself.

When it comes to the changing table, it’s clear he’s outgrown it. Ironically, it’s a stainless steel medical instrument cart that I picked up for too much money when I lived in San Francisco and used for serving drinks at parties. The top of it is layered with about five or six baby blankets he received during stints in the pediatric intensive care unit.  The shelf below is littered with bags of diapers and diaper pads, boxes of acetaminophen suppositories, tubes of steroid creams, triple antibiotic and vials of other ointments. Curled up somewhere under everything is a cheap-ass stethoscope and a cheap-ass oxygen saturation monitor which I think I’ve tried once—unsuccessfully—on Calvin. There’s an old plastic baby-wipe box containing various sundries such as rectal thermometers, K-Y Jelly, more suppositories and ointments. Stuffed under the changing table next to a mega box of baby wipes rests a crumpled paper bag full of pediatric urine collection bags, sterile cups, plastic biohazard baggies, nitrile gloves and iodine swabs. It's a veritable nurses' station, if not for the dust bunnies that abound.

Calvin’s dresser is crammed with gobs of great finds from the Salvation Army—GAP, Old Navy, Ralph Lauren, Oshkosh, Hanna Anderson—and a few hand-me-downs that friends have given to him. I’ve been told he’s the best-dressed kid in his class—not fancy, just cool—one small way I can help him assimilate with his peers. On top of the dresser amongst his morning thyroid medication and other sundries emerges a compact stereo in which we play the same Baby Mozart CD he's been listening to every night for years. On top of that I keep a mini flashlight at hand to peer in on Calvin when I hear him rustling in the dark of the night.

He's in his cozy bedroom right now, taking a morning nap. Lately, the epilepsy drugs make him sleepy after breakfast. He's all curled up at the end, clasping his orange plastic football to his lips. Makes me want to crawl right in with him and dream of him as a healthy boy in a sweet smelling room full of books and Legos, crayons and coloring books and a well-loved cigar box holding coins, rocks, marbles, seaglass and shells from the kind of summer spree I used to have as a child but one that Calvin will probably never get to enjoy.

From last August. Things remain the same.

 

7.18.2013

angels and thugs

On Monday I wrote a post on the Trayvon Martin shooting called To Kill a Mockingbird, expressing my regret about the incident, its handling, its outcome, about racism and about the ignorance and hatred some express toward those who are seen as different. One reader commented:

Trayvon was a thug going down a path in life of criminal choices and messed with the wrong "white cracker" as he put it and paid the ultimate price.

I responded to the anonymous reader by noting that Zimmerman, the pursuer, was in fact the one with the violent criminal record, while Trayvon, the victim, was an innocent teen minding his own business, likely trying to defend his own life against an armed predator. He did not deserve to die.

In a stream of consciousness, I thought about my cute, sweet, innocent son Calvin, and the remarks I sometimes get such as, “He is an angel who was put on earth to teach us something.” I can’t help but think that these comments—the one in response to my blog post and the ones said about Calvin—are somehow, however odd it may sound to some, similar.

To say that Trayvon Martin was a thug—a boy with no criminal record, a boy not unlike most American boys his age, similar to boys I grew up knowing who cut school, clowned for the camera, perhaps smoked pot, wore hoodies and sneakers, flipped the bird—smacks of racism, a convenient attempt to lay blame on the black victim in the same way a rape victim is often seen by misogynists as somehow culpable for her attack. To say that Trayvon was a thug ignores—while at the same time epitomizes—the miserable truth about racism and racial profiling and their egregious impact on our criminal justice system, on our prisons, on the safety, harmony and cohesion of our society. It surrenders to stereotypes rather than facing facts, as uncomfortable as they might be for some individuals: that a black male youth was the victim, not the miscreant. Trayvon was not a thug.

Similarly, to say that my disabled, developmentally delayed, non-verbal, seizure-ridden, drugged-up little boy Calvin was put here to teach lessons to those of us privileged enough to have good heath and fit brains, succeeds in ignoring the pain, burden and senselessness of a suffering child. It is an effort to make it all okay, to mitigate what is most unfortunate and harrowing rather than facing the many truths of a disabled child’s life, which, along with joy, often includes hurt, frustration and heartache. To justify a child’s existence in this way is to say that somehow it is their charge in life, that their suffering was meant to be. How else can the words be interpreted? Certainly, I have the ability to learn from Calvin, which I have done and continue to do, but he is not here expressly for that purpose. There is a distinction. Calvin did not deserve to pay the price of poor health for my gain. Calvin is not an angel.

Yesterday morning I saw a very sad video of my friend’s child, August. He is a boy who has a lot in common with Calvin, though he is several years older. For unknown reasons, August has regular bouts of extreme extension, lasting days on end, causing him to arch in a way that appears impossible for a body, even a young one, to do. In the video August whimpers and groans, and in his pain I see my little Calvin, who often exhibits discomfort, which at times is difficult if not impossible to ascertain or remedy. Though the video includes a caution as to its disturbing nature, I chose to watch, did not avert my eyes, because I want to know, I want to tell people everything about our children, that they are often happy, sweet kids but that they are also sad and often suffering. They are not on this earth to improve us. They are just here and we are here for them, and thought it might sound harsh, it is presumptuous and flabby to say otherwise, even if it is intended to be kind.

To hold these beliefs—that Trayvon was a thug or that Calvin is an angel put here to teach us lessons—is to dismiss one’s self from the messy reality of life’s inequities, to turn a blind eye to the hard questions and the difficult challenges that racism, disability and suffering present to those who experience them and to the larger society, simply because somehow it’s easier, it’s comfortable, it’s convenient just to believe in angels and thugs.

7.17.2013

to see

From last August.

Often, I think about the gawkers who stare down Calvin without the slightest glance at me. They must not feel my reciprocal gaze glaring heavily into their downcast eyes, burning through their oily lids. It’s as if I’m invisible to them, the magnet of Calvin’s otherness blinding them to anything else, fixed in a state of catatonia on my bizarre child. Sometimes, I want to rush up and shake them, upset their stupefaction, wipe the sickly looks off their faces.

And then there are those who avert their eyes and usher their childrens’ glances away from my peculiar son. I remember a beautiful and horrible scene in The Tree of Life by Terrence Malick. A mother and her toddler are sitting on a blanket spread out on the grass. In the background—the neighbor’s yard—a man is lying on the turf convulsing in mid seizure. The mother cups a hand over her son’s brow to shield him from the sight. I replayed the scene to make sure I’d seen it right. The image has stayed with me and I return to it often. I wonder if this kind of sheltering is at the root of some of epilepsy’s stigma and shame, a barrier to compassion and understanding, a way of pretending it doesn’t exist.

Society shields itself from a lot of heinous images and realities. Over the years friends have told me how they don’t like seeing photos of war, of famine, of poverty stricken neighborhoods. Just this morning, I heard statistics on this country’s charitable giving. The poor and middle class give almost twice as much of their discretionary income to charity as the wealthy—a figure that didn’t surprise me. The journalist went on to say that wealthy people who live in diverse communities—in precincts where they encounter the needy often—are more charitable than wealthy folks living in high-class neighborhoods amongst other rich people. It appears true that seeing equals believing equals caring equals giving.

I suppose there are people, though, who don’t want to see certain truths because it makes them feel sad, uncomfortable, or perhaps even guilty. Some of us want our lives to be tidy, like some perfect family photo perched on the bedstand, the children all dressed in their Sunday best. In it, Sally isn't wearing her glasses, Johnny smiles closed-mouthed hiding unsightly braces, everybody says, “Cheese,” and looks happy. At the grocer we choose unblemished fruit, the latest expiration date, we pass over the slightly crumpled cereal box. We scoff at beater cars and roads with pits and ruts. We want pristine lawns and pleasant children with good, clean manners. Some of us must have the latest fashions, the newest cell phone, the oh-so-tasteful remodeled kitchen. Some of us don’t want to witness others suffering or starving or waging wars or having seizures. We don’t want to know that our kids are smoking pot, drinking beer, having sex and lying to us. Only other people’s kids do that. We judge and blame people who don’t have jobs or who live on the street because we don’t see how or why, and not because we don’t have eyes, but because we choose to avert them from unfamiliar, thorny, messy situations. We want our lives to remain unstained, to be wrapped up neatly in shiny little boxes, want to walk around with blinders on. We don’t want to feel things except golden rays of sunshine and happiness. Don’t read the news, it’ll make you feel bad.

But perhaps we need to feel bad in order to care about others. There are those of us who feel—who want to experience—all human emotions, who want to know about tragedy and its roots, embrace humanity with its crippled existence, its oddities, its mistakes, its gross inequities, just so we can right them. Some of us don’t avert our eyes from the checkout boy with Down syndrome, or the child with autism, or the drunken homeless man who smiles at us, or the woman carrying a cardboard sign asking for a handout. Who can know their reality but they themselves? And yet many judge, avoid, spurn, shun. Instead, perhaps we can see the world with the curious and compassionate eyes of a child and simply ask, “why?” Then, maybe, we can decide to do something about it.

Source: NPR Morning Edition


photo by Michael Kolster

7.16.2013

change

Not everything that is faced can be changed, but nothing can be changed until it is faced.

—James Baldwin

photo from http://www.rageagainsttheminivan.com/2013/07/why-im-encouraged-after-trayvon-martin.html?m=1

7.15.2013

to kill a mockingbird

Back in my late twenties I entered into a five year relationship with an African American man named Jim. Despite the fact that he was smart, handsome, charming and funny, the relationship had its problems, the least of which was race. But what I learned during those five years has stayed with me, and I’ve used those lessons to try to improve myself, and the world, in whatever small ways I can.

What I learned was that Jim, like the rest of us, had been taught—wrongly—by society to fear black men. I learned that most black men—innocent ones—get stopped on the street, pulled over, harassed and bullied by white men in uniform for nothing other than minding their own business. I see vignettes of these injustices and discrimination frequently: the young black man in front of me about to board the airplane who is the only person asked to check his bag; the sharp dressed black man in the department store who is mistaken for the clerk; the African American restaurant guest who is purposefully neglected by the staff; the racist, bigoted Facebook posts about black men and prison garb.

Saturday’s verdict in the George Zimmerman case—an acquittal handed down by a mostly white jury—reminded me again of the gross injustices that occur in this country from small scale to large, reminded me that we might be better off if we lived in mixed communities rather than gated ones, reminded me of the countless times I’ve heard white people complain that they shouldn’t have to apologize for slavery, and how I’ve told them that they’re missing the point, that what society must put right is the continued oppression of black people.

Years ago, I remember my mother remarking on a dapper, tall black man stepping out of a luxury car. Her take was that he must’ve been a professional basketball player. “Why not a lawyer or a doctor or a banker, Mom?” and she seethed and spat angry words at me for what she felt was my judgment of her. Her ignorance and subsequent reaction to my query made me ill. And It wasn’t that long ago that I heard someone close to me use the N-word. I chastised her, because I believe people must be held accountable for their words as well as their actions, lest those insulting words spin out of control into hateful ideals and paradigms, into contempt, into vicious conduct fueled by that hate.

While unravelling in the shower, my mind poured over images of Trayvon Martin, the unarmed youth carrying skittles and iced tea who was gunned down by what I see as an over-zealous wannabe cop with a violent criminal past. Then I thought of the teens and young men with autism and Down syndrome who have died at the hands of security officers who used excessive force because of their ignorance, because of their fear, perhaps because of their loathing. I thought about the gawks and stares—and occasional rude remarks—that Calvin and I get every time we go out in public, which sometimes reek of disgust, even glowering in the eyes of some children—yes, children whose behavior is most obviously and purposefully ignored by their parents.

Then I reeled thinking of the Central Park Five, of Rodney King, of Martin Luther King Jr., of Oscar Grant gunned down at point blank range by a Bay Area Rapid Transit officer in the Oakland Fruitvale station, of the countless stories of African American men, women and children who have died—unjustifiably—at the end of a white man’s gun, in a burned-out church, at the end of a noose. I thought of the millions of black men incarcerated for years in jail cells or on death row, no doubt many innocent of their charges or serving weighty sentences for ridiculously non-violent crimes.

And then finally I am reminded of Harper Lee’s To Kill a Mockingbird, wherein a crippled black man, Tom Robinson, is convicted by an all white jury of a crime he didn’t commit against a white girl who was being abused by her father. I came across this passage of young Jem speaking to his father, Atticus Finch, who had defended Tom in court:

"Atticus—" said Jem bleakly.
He turned in the doorway. "What, son?"
"How could they do it, how could they?"
"I don't know, but they did it. They've done it before and they did it tonight and they'll do it again and when they do it—seems that only children weep. Good night."


I’m weeping, Trayvon, I’m weeping, and so too would Calvin be if only he could know.

Trayvon Benjamin Martin, February 5, 1995 – February 26, 2012

7.14.2013

sitting here watching

I'm sitting here watching my happy boy. He’s feeling better today. Sitting here watching him smile and squeal and bite his rubber giraffe and play with his toes. Sitting here watching him pirouette, Joni Mitchell filling the space with her cool sound putting us all in a trance. How does he do it with such grace and coordination?

He’s getting so big, looking so good, yet still so much like a baby. Spinning. Spinning in circles.

Sitting here watching my perfect boy, save the dark circles under his eyes, save the missing hank of white matter, save the seizures, save the drugs, save their side effects. He is sweetness embodied. He’s a pony boy, those long legs capped in white socks prancing in the jumper.

Sitting here watching and wishing for so much more. But I’ll take today, with its happy pony boy, this goofy, gangly, giggling boy, though still hoping for more tomorrow. Always hoping for more.

7.13.2013

deb

Deb: Dedicated, Excellent. Bad-ass doc. Deb.

Deb is my son’s pediatrician. She’s been with him—with us—since Calvin was three weeks old, since we transferred from Maine Medical Center, where he was born, to our local hospital shortly after he was released from the neonatal intensive care unit. We took up residence in the labor and delivery ward for nearly four more weeks while Calvin practiced nursing.

Deb: Dogged. Encouraging. Brilliant. Deb.

Nearly every day while in the hospital, it seemed, Deb came to check on us in the morning. Usually, I had very low spirits having tried nursing Calvin with little luck since he was born six weeks early and having not yet developed the suck-swallow reflex. The nurses assigned to him would, every feeding time, weigh him on a sensitive gram scale before I nursed and then again, after, to determine how many grams of my milk he’d ingested. Then he’d get the remainder of his caloric requirement through a nasogastric tube attached to an inverted syringe full of my pumped breast milk. Deb was our cheerleader, and as such she coached us and assured us that Calvin would one day get it, would one day be going home. Without her I’d have fallen much earlier into the depths of despair because of my child that was failing to thrive. Without her I’d have had little hope.

Deb: Determined. Empathetic. Blue-ribbon. Deb.

But I did have hope because she gave it to me, and when Calvin was seven weeks old and barely six pounds, we brought him home. Since then Deb has made us feel as if Calvin is her only patient. I can’t quite wrap my head around the amount of time and effort she spends at work and then at home scouring stacks of books, medical journals and the Internet beefing up on my son’s conditions and afflictions and how to best treat them. She continually fields my copious emails, squeezes us in early for urgent appointments, speaks to us at length on the telephone long after her last patient has gone home, hugs us, at times cries with us, empathizes with us and has even made house calls on more than one occasion.

Deb: Down to earth. Extraordinary. Benevolent. Deb.

It’s difficult, if not impossible, to imagine what caring for Calvin would be like if it were not for Deb. She’s a rock. She’s Superwoman. She’s a caring individual and an indefatigable advocate for my son and my family. She’s the best pediatrician I can imagine, and though we don’t hang out together, I feel honored to call her my friend.

Deb. This one's for you.

photo by Michael Kolster

7.12.2013

friday faves - on god and good teeth

Just after sitting down in a booth with my husband over a cup of coffee and a ridiculously fresh Boston cream donut, I found myself reclined in a dentist’s chair, my tongue still covered in that gritty-greasy film that a good donut leaves you with.

Between swabs of gel anesthesia, needles full of novocaine, sharp and shiny stainless steel instruments and rubber-gloved fingers all poking around in my mouth, I had a pseudo conversation about my disabled son.

After telling him a little bit about Calvin, the hygienist, a handsome, kind, funny guy, asked how Calvin reacted at the dentist. I told him that he did pretty well all in all. He mentioned that in college he’d written a paper about the dental health of mentally retarded people (inspired by his girlfriend at the time who had been working with the intellectually disabled.) He explained that he’d read papers about how this segment of the population was missing an enzyme that caused tooth decay, so although they had great trouble with tartar forming on their teeth, they didn’t get cavities. He went on to say something like, “It’s the good Lord’s design”—that God had given these kids cavity protection by designing their bodies is such a way as to avoid them. He explained how, being a religious man, he believed it. With a suction hose in my numb mouth I mumbled, “I don’t,” and we both laughed. What else was there to do?

My head was reeling, though not from the anesthesia or the bright light spotted on my face. Why would God go to all the trouble to protect these kids’ teeth but do nothing to protect their brains? And I don’t buy the line that God works in mysterious ways so we can’t always know or understand his plan. What kind of divine plan, or its maker, includes debilitated, suffering, and terminally ill little kids and their families? Not one that I can believe in.

I remember a fellow alumnus from my high school, upon hearing that Calvin was generally a happy little kid, telling me how God creates these mentally disabled kids with sweet dispositions just to make the road a little easier. Well, if I believed in that God I’d say He’d stopped way short of His potential.

Meaning no disrespect to the devout and their own private beliefs, or to the affable hygienist who I can imagine calling my friend, sometimes I think I’d prefer being stabbed in the gums with a sharp instrument over hearing theories of how my kid, and others like him, was intentionally designed by a supposedly all-loving, omnipotent Creator, to live a life of suffering.

Originally published August 2012.

7.11.2013

what i do

When my nine-year-old son Calvin’s bus arrives at the end of our driveway I sweep him off the steps, give him a kiss and set him on his feet. He usually has a smile on his face because home, it seems, is his favorite place to be, though school comes in close second. Sometimes we step inside and wash his hands then I read his daily summary sheet looking for the number and quality of any poops, searching for remarks on his balance and behavior and for what types of activities he engaged in while at school. At times, I hand him over to the nurse who sometimes fetches him from the bus herself, in which case I go back to my gardening or my writing or, on rare occasions, my cleaning.

What I don’t do, I see other parents doing with their children, and with a clenched heart I wonder if they are cognizant of how fortunate they are to be doing them. I don’t greet my son beaming with admiration at the way he describes how he made the paper mache sculpture in art. I don’t walk with him across town, kicking stones and acorns, to buy ice cream cones at the little red shack on Maine Street. I don’t send him off on his bike to the neighbor’s house to play. I don’t take him to swimming lessons where I watch intently from the side of the pool. I don’t take him to the store to pick out a new helmet or cleats or ball or bat or jersey or a spanking new pair of shoes. I don’t hear him recite his newest poem written in neat, round letters on wide-spaced ruled paper. I don’t head to the back yard to toss a ball that might just land in a mitt that devours his little arm practically up to its elbow. I don’t teach him cartwheels or somersaults or how to make a blade of grass sing between his thumbs. I don’t send him off to walk the dog or ask him to make himself a peanut butter and jelly sandwich or to go ask his father a question or to head upstairs to clean his room or do his homework.

What I do do, as on a day like yesterday, is to keep him out of his regrettably short day of summer school so we can drive nearly three hours to his neuro-ophthalmologist’s appointment in Boston where we sit and wait until the technician receives us then glues leads to his ears and on the back of his head as he whines and struggles to free himself from his father's restraint while he watches black and white checkerboards in various sizes dance across a screen in front of him so that the technician can record and decipher the activity of his visual cortex.

What I do do is then pace around behind him in the office for an hour waiting to get his glasses tested and his eyes dilated so that one of the Best Physicians in Boston can examine him, then I give him his lunchtime seizure medicine in a spoonful of yogurt and watch him drift off to sleep in his stroller with his eyes half open like he does when he is sick, like he does just before a seizure.

What I do do is watch him begin to jerk and twitch in that stroller and wonder if it’s a seizure and my muscles tense and I sit at the edge of my seat waiting to spring into action. But it isn’t a seizure, and some commotion wakes him up and his pupils are saucers and he stares at his snapping fingers and a soiled bib remains clipped at the back of his neck and he chews the harness we’ve strung across the stroller so that he won’t fall out and he grinds his teeth and we’re still waiting for the doctor to examine his eyes so we can get the hell out of there and drive three hours back to Maine arriving long after I’d usually be sweeping him off of the bus from school with a kiss.

photo by Michael Kolster

7.10.2013

shots

One-hundred percent of the shots you don't take don't go in.

—Wayne Gretzky

Wayne Gretzky

7.09.2013

medical marijuana, please

Calvin suffers from medically refractory epilepsy, which means that his seizures are not fully controlled with the use of drugs or dietary therapy. He is not a surgical candidate (cannot benefit from neurosurgery) because we believe his seizures are generalized, involving the entire brain from onset. In the past seven years calvin has tried nine different anticonvulsant medications in various combinations. All have failed to fully control his seizures. He's tried two rigid dietary therapies (ketogenic and low glycemic diets) with no positive results and currently takes three powerful anticonvulsant drugs yet continues to have prolonged seizures, each lasting as long as eight minutes.

Calvin must endure many side effects from the anticonvulsant medications including, though not limited to: headache, nausea, indigestion, hyperactivity, ataxia, visual disturbances, dizziness, lack of coordination, lack of focus, irritability, memory problems, attention deficit, poor appetite, muscle fatigue, sleep disturbances, psychomotor hyperactivity, behavioral issues and gross developmental delays. It is difficult to know which of these side effects, such as the psychological ones, might prove to be permanent.

Medical marijuana hybrids with high CBD to THC ratios have proven in many cases to reduce and sometimes eliminate seizures in children with medically refractory catastrophic epilepsies such as Doose syndrome and Dravet syndrome, while causing little to no side effects.

Calvin's quality of life is negatively affected by his continued seizures and heinous side effects from the anticonvulsant drugs he must ingest every morning, noon and night. I believe that as long as he has seizures and suffers these side effects he will never reach his full potential, he will continue to have behavioral problems such as hyperactivity and he will never feel completely physically well.

Medical marijuana, please.


7.08.2013

no words

Out in the open field alone the air feels damp and heavy, but with that weight comes some sense of comfort to my sadness, like the blanket that my father used to pull up over me before he kissed me goodnight then left a sliver of light through a crack in my bedroom door. Then, through open windows dressed in colorful drapes that at night dissolved into greys, I could hear the hush of wind through the trees as I do now, and smell the freshly cut grass that works its way between my wet toes like bits of ribbon.

Is it the silence that makes me think of him now? A giant standing tall and thin as some of the trees skirting the field. I remember the quiet that my dad and I shared on walks or while crouched and bent working in his garden together, then I think of the silence that Calvin and I share simply because he has no words to speak. But does he have thoughts that long to be formed into words?

Someone once said to me with teary eyes, “Sometimes I wish the good Lord would just take him,” and I winced as Calvin was described as flying across the sky. Winced, too, because I’ve wondered if it would be easier for me, for him, if he were gone. But not as an angel, I thought, as a star.

There is a sublime beauty in that there is no heaven, no hell, but rather this magnificent universe in which everything is divine. They had it right when they said, Ashes to ashes, dust to dust. One's eternal life exists in the minds of those they leave behind. I can almost be sure that is what my father believed and passed on to me, though without words. And Calvin, like a fleeting star, will never know those beliefs, those thoughts. He’ll simply be, and then one day, not be. And those of us left behind will breathe in the heavy, moist air perhaps smelling his sweet skin, feel the wind through our hair as if it were his fingers and hear his whimper faintly amongst the trees. In that way, like my dead father, he will live on.

But not now, while we share this world together. For now, we belong to each other, and the bright streaks across the night sky that we search for, marvel at, cherish and perhaps remember are glorious comets, star dust, ash. And they don't look down upon us. And they have no words.

photo by Michael Kolster

7.07.2013

nurse please

In the past couple of weeks I’ve trained three new nurses having just finished training two others in the few months prior to that. The two recently trained nurses quit after their first day, and another—a very good nurse—is due to move to Colorado in a fortnight, leaving us with a single nurse who works just one day a week.

Nurse please.

I can’t quite figure out exactly why it is so unbelievably difficult lately to find someone to help take care of Calvin. Since Calvin began receiving in-home nursing services when he was two, it has been challenging at times, but we’ve always managed to land incredible nurses (with only a smattering of scary ones.) Perhaps the agency isn’t doing the best job at screening, isn’t telling the candidates what the job really entails. Perhaps when the nurses work with me and Calvin for a six to eight-hour shift they realize they aren’t up for it. They tell me that they want to do it but then they call to say they can’t. Maybe they aren’t strong enough. Perhaps they don’t have the patience. Maybe it isn’t challenging enough. Maybe it’s too challenging. Maybe I’m too much of a perfectionist and a control freak when it comes to caring for my child and that doesn't appeal to them. Maybe it's a combination of all of the above. Whatever it is, though, it sucks. It sucks to be left high and dry for weeks on end not being able to even scratch my nose with Calvin teetering on the opposite end of a short leash. It's particularly difficult when school is out and there are no activities for kids like Calvin—no soccer camp, no day camp, no play dates, no way to send him to a relative or a friend for vacation.

Nurse please.

And so these past few weeks since school let out I’ve been tested. I’ve strained my back, inadvertently had my eyeballs punched, my face scratched, my head bonked, my hair pulled, my sleep interrupted, my patience tried, my anxiety tested and my heart broken by several eight-minute long seizures. He’s a hard case, to be true. But you’d think at twenty-five bucks an hour to spend with an impossibly sweet, albeit sometimes hyper kid, there’d be more than a few decent nurses wanting to sign up.

Nurse please.

photo by Ann Anderson

7.06.2013

unsaid and undone

The bitterest tears shed over graves are for words left unsaid and deeds left undone.

—Harriet Beecher Stowe

Quahog Bay, Maine

7.05.2013

friday faves - the best exotic marigold hotel

From last July

I ran in from the rain, purchased one ticket, a small bag of buttered popcorn and a bottle of water. Once inside the small theater I stepped past rows of frizzy white-haired women and balding men. The house was quite full for a Tuesday matinee, but luckily my favorite couch in the front row was vacant. I’d made it just in time for the previews and finished my popcorn before the feature film began.

We were all there to see The Best Exotic Marigold Hotel. I’d heard nothing about the film but that it was worth watching. And so began my vicarious journey—through each of the characters’ eyes—into India. I traveled on a crowded bus laden with baggage strapped so tightly to its back that it looked like a laced roast beef. I jammed myself into the back of a tuk tuk weaving through throngs of colorful, dusty, beautiful people. If I’d been lucky enough to be watching in Smellorama my mouth would’ve surely been watering for curry and naan. I wanted to be THERE. And just as I was quietly lamenting my life’s imprisonment with my disabled son, my cabin fever, my inability to travel the world in the way I’d done in years past—to travel to India as I’d always wished—the soothing voice of Dame Judy Dench spoke to me and said:

This is a new and different world. The challenge is to cope with it ... and not just cope, but thrive.

I continued to ride the wave of scenes that passed before my watering eyes, to see beauty in the simplest things, the most basic gestures—a warm embrace, a spicy home-cooked meal, a kind face, a bustling market, a modest yet rewarding job, an evening stroll through the city, joyful children playing in the streets, the sound of a foreign language, the beauty of a different people.

As I watched these images blur across the screen and felt them move me inside, I tried to see—to understand—how my life with Calvin, with his seizures and drugs and gross limitations, might be rich and colorful. And though our days are monotonous and stream into each other as silently as osmosis, I know that he has changed my life—has changed me—in a way not unlike the culture shock of visiting a foreign country, but in a profoundly deep way that allows me to see the world from a completely different perspective, a less selfish one. And, as one of my favorite poems reads, Calvin “picks me up, turns me this way and that, and puts me down softly in a new place—always a new place.” For the most part, I think I’ve found ways to cope with this new and different world of life with Calvin, and I am constantly looking for ways to thrive—this blog being one—but it is indeed a challenge, most assuredly the greatest of my life.

And maybe one day, after years of being Calvin’s mother, nurse, physical and occupational therapist, doctor, coach and teacher, all that hard work will pay off and I’ll get to step out of this world and into another ... maybe even an exotic marigold world called India.

7.04.2013

r and r

Enjoying some much needed r and r today. Happy Independence Day everyone.

photo by Connie Kolster

7.03.2013

kolster united

Salty dogs under foot. Misty mornings. Cold drinks. I love yous. Riotous games. Growing teens. Sharp minds. Twilight boat rides. Scary movies and movies that make you laugh and cry. Live with Mike on WBOR. Family dinners. Bugles. Champagne, bourbon, beer and wine (not to worry.) Time together. Time alone. Hugs. Sharing Calvin. Frosty's donuts. Late night conversations. Sleeping in (for some.) Cheese. Humor. Most wonderful niece and nephews. Smart-ass brother-in-laws (who I adore.) Lovely (in every way) sister-in-laws. Gorgeous views no matter the weather. Hosts with the most: Jimmy and Poopsie. Triple lobster. Three more cherished days.


7.02.2013

heartache, hardship and joy

Ethan bounces a basketball in the driveway. Inside, Ben holds Abby on a couch the same color as her coat. She licks his face. As dusk begins to fade, mosquitoes hover while Maddie and Zack are out on the boat with Michael. The faint hum of the motor skips across the bay. I sit on a padded chrome chair in the middle of the dock with my sister-in-law, Betsy, who straddles a dry-docked kayak. Her husband Sean takes the other chair while Rudy noisily paces around dragging his paws across the corrugated aluminum deck. It is a perfect moment. The nip in the air and the chill of white wine in glasses as big as our smiles gives me shivers. Dinner is done and Calvin is behind doors fast asleep in the vacation rental, which sits on a bluff just feet above Quahog Bay. Gma and Gpa pull up chairs on the upper deck to spy the red light off the butt of the boat as it drifts into the dock. David and Lisa join just as an osprey flies overhead.

We had taken our young nephews out on the boat earlier, Calvin too. It was my first ride of the season and two summers since I’d last had Calvin on my lap in the boat. He squirmed and screamed with some sort of excitement, perhaps irritability, perhaps indigestion. As he did so, I held him tightly so that neither of us got hurt. Ethan took a hesitant try at steering the boat while Michael shot a few pics of us from the bow.

“This is the best family reunion ever,” Ethan had told his grandmother, and continued, “No offense, Grandma, but this is better than the one in Amelia,” and he went on to explain—with a no-offense lead-in each time—that he preferred that the reunion was an airplane ride away from home and was near Calvin’s house. No offense was taken.

“Calvin is my most favorite nine-year-old,” Ben chirped a few times, “I can’t believe he’s going to be ten next year,” and I recalled how Ben was ten the last time he visited us with his Dad, and in my mind I compared the two: the boy with Autism versus the boy with epilepsy who is missing part of his brain. His mother Lisa, my other sister-in-law, showed me the handful of pills she was about to give each of her sons and said lovingly, “See, you’re not alone.” I began to say how glad I was not to be alone, but then retracted that gladness replacing it with regret that either of us—anyone—must endure the hardship and heartache of children like ours, children that bring us so much despair yet so much joy.

photo by Michael Kolster

7.01.2013

understanding

I went to sleep with a smile on my face listening to the sound of faint laughter seeping through the crack I’d left in the bedroom window. Outside the trees were dripping, as if rain, in a soupy fog that had moistened the skin on my face and set blades of grass aglow in the twilight. I had left the boys, Michael, Charlie and Roger, under the light of lanterns, to head upstairs to bed. The three friends remained for a time in the refuge of the screen porch sipping from beers and bourbon between quips and guffaws, safe from the bite of bugs and the swoop of an occasional bat. After three goodnight hugs I stepped out onto the dewy lawn as Charlie joked, “Sleep well and good luck living with him.” We all laughed at Michael’s expense and he understood our love.

I had spent part of the day gardening under a dark sky in the dampness of a constant mist. Perfect gardening weather, I’d thought, as I dug up and relocated hostas, clipped spent peony buds and transplanted phlox. I take great care while pruning to achieve the ideal form of a plant or tree in relation to its neighbors, to its available space. By pruning I exert control over my garden. It’s my therapy, I tell people, a way to perfectly influence something since I cannot control my son’s condition, his seizures, and therefore cannot really control our lives to a great degree.

I think Charlie and Roger understand, at least to the extent that they can, not having disabled children of their own. It’s because they listen, they watch, they read. These friends of ours thankfully never give advice, never try to fix things, never try to tell us that Calvin is a gift or an angel or that things will get better. They just spend time with us when they can and in doing so bring great levity to a home riddled with anticonvulsant drugs and seizures and shrieks and falls and back-breaking lifts and sleep deprivation and endless dirty diapers and an often irritable, hyper kid who cannot tell us what is ailing him.

And so I closed my eyes and imagined the garden teaming with birds and buds and tender inches of impossibly green new growth that seemed to appear overnight. I closed my eyes to the warm light radiating from a porch nestled in the midst of a black Eden. I closed my eyes to the happy sounds of friends who love us dearly. And I closed my eyes to the rustle of Calvin sleeping peacefully in the next room, perhaps dreaming, though I know not of what.

photo by Michael Kolster