3.31.2012

cluster bomb

This morning my sister and I put Calvin into the stroller to set out on a walk with Rudy the dog. As I bundled up Calvin in a thick fleece blanket suddenly the color drained from his face, his eyes began jerking and fluttering, his mouth slackened and he turned pale and listless. "He doesn't look good at all," I said, so we quickly took him out and I ran him upstairs to secure him in his bed. He seemed to perk up so I gave him his orange plastic football and grabbed the opportunity to take a much needed shower. I put the baby monitor at maximum volume and set it on the windowsill near my head. Lathering my hair I heard him coo and shriek as he played with his favorite toy.

As I stepped out of the shower, though, he became silent again so I hurried into his room calling, "Calvin!" He was lying on his back at the foot of his bed, football firm in his grasp, with a slightly flushed, expressionless face. He did not respond to my words. Suddenly, he snapped out of it again, though he seemed very tired so I dragged him up onto his pillow, covered him and tucked him in. Again he silenced as the sickening pallor crept over his face. I noted an almost inaudible click escaping from his lips—a sound I regrettably know all too well from his countless partial seizures. With eyes just shy of half-mast he drifted off to sleep. The insidious cluster of seizures seems to have returned.

I'm watching him sleep like a hawk right now, peering down through the safety netting atop his bed. His parted eyes look dead. These are the kind of seizures that repeat themselves throughout the day and can develop into status epilepticus, the serious, sometimes lethal condition of serial or prolonged seizures often difficult to stop. These are the cluster bombs that can resist emergency medication, put us in the ER—sometimes requiring emergency intubation—and eventually land us in the pediatric intensive care unit fearing the very worst. These are the stealthy seizures that come out of nowhere—like a menacing thug in some dark alley—and silently batter our little boy's brain.

Kids die from this stuff, I think to myself. And yet most of the world has no clue—thinks epilepsy is a benign condition where you take a pill and everything is okay. Oh, how I wish it were so.

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Give to cure epilepsy: http://www.calvinscure.com


3.30.2012

friday faves - bitches

In June of 2010 Michael, Calvin and I took our first trip since Calvin's epilepsy diagnosis—and constant, worrisome struggle with seizures—four years earlier. We hopped on a plane to visit Calvin’s grandparents in Florida. They live in a beautiful, quiet neighborhood with huge arching live oaks dripping with gauzy swags of Spanish moss and casting large cool shadows over the homes.

A few miles away live our two young nephews who, one muggy afternoon, came to visit us with their parents. I took Calvin for a walk in the stroller, accompanied by my sister-in-law and her boys, then age ten and twelve, both of whom have autism. We brought Abigail along on a leash, their grandparent’s miniature Dachshund whom the boys have grown to trust and love. Other dogs, however, terrify the boys, at least until they’ve had a chance to warm up to them.

A block or two into our walk past a string of somber, earthen colored homes, and as we rounded an easy bend in the road, we spotted a mother with her two little kids and their old, fat, female Dachshund. The hound was off leash while they were loading up their car and she excitedly waddled toward us to say hello. My nephews, fearing a strange yapping dog with long yellow teeth quickly closing in on them, went berserk, screaming in sheer panic.

Understanding the dog’s innocent desire to greet us I knelt down to pet it and kept it a safe distance from the boys who were cowering behind me. The owner approached narrowing her eyes as if we were aliens from another planet. She looked angry. To cut the atmosphere I said “hello” but she remained silent and cross. “How are you today?” I continued. Still no answer. As she abruptly whisked the dog from my gentle grasp I explained, “the boys are afraid of dogs, it’s okay.” Frowning, she continued to give me the stink-eye so I wished her farewell and sourly told her to have a nice day, clenching my teeth to bar the word “bitch” from escaping. I couldn't understand her vexation with a couple of unassuming mothers and our three young, extraordinary boys.

Our spirits ruined, we turned around to saunter home. While raving about the injustice that had just occurred, and minding our own business, I fairly glimpsed a pair of tanned elbows propped against a short bank of mailboxes, their matching rusty mouths chattering away. The two hens gawked at us as we passed.
 
The blond one shouted out to me, “That dog is friendly, ya know.” 
“That’s fine,” I replied in a flat tone, “but the boys are afraid.”
 
The other chick scoffed with an ugly snort, as if laying an egg, which provoked me to boom “so what business is it of yours anyway?” I finished off with a sardonic remark about their warm and welcoming neighborly spirit.

The incident left me steaming. In the cool of the air-conditioned house I became a block of dry ice and it took me a couple of hours and a glass of red wine to sufficiently melt. I simply couldn’t believe all of the ignorant bitches that were off leash that day. At least I didn't have to deal with their daily doo doo, because that stuff sure stinks.

photo by Michael Kolster
Originally published 3.29.2011.

3.29.2012

birthday bash blues

Everything changed the moment we found out that there was something terribly wrong with our unborn child’s brain. At that point we decided we wanted to find out everything about him so we learned that he was a boy and we named him Calvin, the only name we ever truly loved.

Two good friends, wives of Michael’s colleagues at the college, were due to have their babies within weeks of Calvin’s original due date. I dreamed that the three boys would all go to the college day care, have the same friends and grow up together as neighbors. Instead, complications developed and Calvin was born six weeks early with little to no fanfare amidst much worry and uncertainty.

Our friends’ sons were born a month and a half later in our local hospital. Calvin and I had been boarding in that very labor and delivery ward for several weeks while he perfected nursing. One boy was born just down the hall from our room and the other in the room next door. We all went home with our infant sons within days of each other.

Months passed but Calvin never entered the daycare with the two boys, nor did he become their friend, nor any child’s friend for that matter.

I remember what must have been their second birthday party. Several gleeful children from the college daycare were there with their parents. Shiny Mylar balloons floated aimlessly around the room. The table was adorned with pretty cupcakes and colorful sippy-cups filled with juice. Cute gift bags stuffed with sundries and toys were strewn onto the floor and, excitedly, the children rummaged through the goodies. In my arms, and while I stood off to the side, Calvin cried and cried. The other children were scampering around the room in cone-shaped hats and blowing out candles, some eating their cake with forks. My child couldn’t even sit up by himself in a chair, couldn’t crawl, couldn’t hold a fork and didn’t seem to be aware of the things going on around him, though maybe his crying was in protest of the unfamiliar scene. In any case, there was no way of knowing, but he simply couldn’t deal, and as a result, neither could I. I wanted to dissolve into the wallpaper or hide behind the plants. Instead, I retreated upstairs so as not to cause a ruckus and in an effort to calm Calvin. Upstairs, I could hear the animated shrieks and happy commotion below. I hoped that the hubbub was loud enough so that the guests couldn’t hear my sobs.

A few moments later my friend, the hostess, found me and embraced me as I disintegrated. She didn’t let go until I did. I knew she could have no idea of the torment I was feeling but I could see the genuine concern and worry in her face, which told me she might have known, to some extent, why. She helped us pack our things and quietly escorted us out, leaving the merrymaking behind.

To this day my boy Calvin is oblivious to the meaning or tradition of birthdays. Before he was on rigid dietary therapy for epilepsy we'd make him a cupcake, stick candles in it and stand by for damage control. Now—the diets having failed to control his seizures—he can eat sweets again so this year, on his eighth birthday he had his first taste of a bona fide birthday cake. He still tried to grab the candles. And though I always appreciate the occasional invitation, I usually take a pass on most birthday parties, but perhaps someday that will change.

Version originally published 12.06.2010.

February 2006

3.28.2012

eeg

When I walked into the small, sterile closet-like room I had a bad feeling it was going to be a rough hour-and-a-half. I was right.

The setup for an EEG (electroencephalogram) is never easy. It’s a painstaking process, uncomfortable, at times hurtful, irritating and perhaps even scary for a five-year-old kid who doesn’t understand what is happening to him.

The first order of business is to part Calvin’s hair into sections, rubber-banding it if his locks are too long, then precisely measuring distances on his scalp. Twenty-eight sites are marked with a grease pencil, abrasively if the technician doesn’t wet the tip to soften the hard waxy lead. This time the tech was a beefy woman who embodied the stereotypical image of a burly Swedish masseuse. For the purposes of this blog I’ll call her Helga. Helga came complete with a large bosom, an ample middle and a stern expression, thin hair pinched back tightly into a bun. Her thick ankles sunk into squishy white orthopedic shoes that wheezed under each heavy step. Helga strong-armed Calvin’s head with Popeye forearms, pulling him into her heaving breast to restrain him while she marked. He had no recourse but to comply with her will.

After Calvin’s scalp was marked with the red crosshairs, one by one Helga filled tiny copper cups—leads—with conducting paste. She set them carefully at each site, covered them with a small piece of square gauze, painted it with collodion adhesive and dried each with a frigid hissing stream of compressed air. Somewhere in the process, either in the gluing or the drying, ether was employed filling the dismal florescent room with a sickening odor. Helga wrestled with Calvin for over an hour as he whined and cried and struggled to break free from her grasp. Though the underdog, weighing in at just over thirty pounds, he was a formidable opponent and I found myself rooting for my boy at every round.

When all the leads were secured Helga bundled them together into a long ponytail and wrapped the rope of colored wires with a tube of stretchy, white netting. The finishing touch was crowning him with a large, white turban. Like a mummy, yards of gauze were wrapped snugly around his head to protect the leads from being yanked off. The cotton helmet came complete with chinstrap and holes cut out for his ears. Calvin looked like he’d been wounded in action or perhaps had just come out of neurosurgery. Regarding him made me sad and I wondered, dreadfully, if his little brain would ever have to go under the knife.

For the next three days Calvin remained in a hospital room fettered to the wall with a mere fifteen feet of leeway. His bed was positioned under a camera fixed in the middle of the ceiling for purposes of recording any seizure activity. I stayed by his side, made his special meals, fed him and slept with him. Calvin’s neurologist instructed me to push the red button on the recorder any time I saw suspicious behavior that could be construed as a seizure.

During this particular EEG no seizures were captured, which was both a relief and a frustration. Without that information it's impossible to determine where in Calvin’s brain his seizures might be originating and therefore whether or not he is a candidate for neurosurgery.

Though Calvin has been having fewer tonic-clonic (grand mal) seizures of late, we have begun to see some behavior that resembles absence seizures (petit mal) though we can't be sure. As a result, Calvin will be facing yet another EEG in the coming weeks. I just hope that Helga is on a long holiday visiting her motherland.

Please share this story to help bring us one step closer to a cure for epilepsy.

photo by Michael Kolster

3.27.2012

to love

To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beauty to its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand. To never look away. And never, never, to forget.

—Arundhati Roy

Summer 2006

3.26.2012

as long as it's healthy

I’ve often heard pregnant women say things like, “As long as it’s healthy,” or, “As long as it’s got ten fingers and ten toes.” I believe they're referring to their indifference about the child’s sex, but hearing their comments always made me think further ... and what if it’s not healthy? Well, mine wasn’t—isn’t.

I don’t often speak about the fact that one of Calvin’s many diagnoses is PDDNOS: Pervasive Developmental Disorder Not Otherwise Specified, which resides somewhere on the autism spectrum. As far as I understand it Calvin has several autistic traits, though not numerous enough to be labeled with full-blown autism.

Perhaps the reason I haven’t focused on this aspect of his condition is because his intractable epilepsy eclipses all of his other disorders, conditions and deficits. His epilepsy overshadows the fact that he is legally blind times five (his vision without glasses is 20/1000.) His seizures, and the drugs he must take for them, trump his gross developmental delays—in fact exacerbate them. His epilepsy dominates my thoughts far above any relentless reminders of his poor muscle tone, his lack of depth perception, his hypothyroidism, his slow gastric emptying, his wordlessness, his poor coordination, or the fact that he barely (if even) performs at the level of a budding toddler though he is eight years old. I worry about his silent death in the middle of the night like a new mother looks in on her infant to ensure he is still breathing.

Before Calvin had seizures we’d been crushed—wrecked—by a blindingly swift, unmerciful chain of events beginning with one horrific 32-week sonogram. That sonogram lead weeks later to an emergency cesarean and a two-month stint in the hospital trying to get Calvin to nurse or bottle-feed. After that we endured years of seemingly ceaseless, colicky shrieking, a miserable succession of missed milestones and a deeply embedded fear of what appeared to be a bleak future for Calvin and for our family.

And then it happened—like a jagged piece of black sky falling on top of us—Calvin had his first seizure. A second one followed six weeks later, then a string of successive ones lead to his diagnosis six years ago: EPILEPSY. Now my kid has a seizure disorder, I thought, and I simply tossed it—as if it were benign—on top of the existing mountain of worries, scrawled it down at the bottom of the long, crumpled list of his disabilities, pitched it in with a million disappointments, a thousand shattered dreams and as many smothered hopes.

But I quickly learned that this epilepsy thing was somehow different than all the rest of Calvin’s disabilities. It chewed them up and spit them out like some insatiable monster laying waste to everything in its path. It has all but erased—with a caustic, scouring veil—nearly every trace of normalcy, any confident strokes of hope, any residual film of a happy-go-lucky existence we’d been able to eek out of life since Calvin’s birth.

Seizure after seizure after seizure punches my little boy’s brain; drug after drug after drug sends him into vertiginous tailspins and drowns him in murky stupors. And as the weeks and months pass his developmental gap widens like an infinite canyon leaving no possibility of bridging the divide, no going back, no catching up, no do-overs. He remains in a sorry developmental limbo somewhere between infant and toddler.

Calvin: Legally blind; lacking significant white matter; ocular and cerebral visual impairments; PDDNOS; physically and cognitively retarded; Cerebral Palsy; non-verbal; disabled; incontinent; completely dependent. None of these descriptors compare to the misery that is epilepsy, which—along with its heinous treatments—makes all of these other conditions so much worse. But hey, at least he’s got ten fingers and ten toes.

To all of my readers, please share this post in honor of International Epilepsy Awareness Day. You alone can make a huge difference. We do the hard work. You just click a button.
Give to cure epilepsy: http://www.calvinscure.com

June 2005

3.25.2012

dream talk

Last night I dreamt of Calvin, which isn't unusual. In most of my dreams of him, however, he is having a bad seizure. I know I dream in color because in these dreams I can see that his hair is auburn, his eyes are indigo and his face is ashen gray-blue. Thankfully, I wake up from these dreams as they are as distressing as the real thing.

But last night's dream was different. The three of us were on holiday together, which in reality has happened only once in over four years. In the dream Calvin had fallen and banged his mouth. When I heard him cry out I came running. I asked him what hurt and with tears in his eyes he pointed to his pouting mouth and tried his best to utter words to me.

I know that to some this dream may seem kind of sad, but to me it is full of hope. Maybe it is some sort of window into the future. You see, if Calvin could learn to point deliberately everything would change. Pointing is a foundation of language. If only he could communicate his needs and desires, or be able to tell us what hurts. We'd know if he has a headache, if he has a tummy ache, if he has a toothache, a twisted ankle, an ear ache, if he bit his tongue or stubbed his toe. He might even be able to tell us that he is hungry or tired or has to go to the bathroom. Without language or any expressive communication besides crying, rubbing his head and eyes or reaching for us, we are left guessing about what might be troubling our boy. Most regrettably, Calvin's continued seizures and the need for powerful medicines intended to thwart them—while not completely successful—greatly limit Calvin's ability to develop, including language.

When I was pregnant with Calvin I dreamt that he was born chattering. I still believe in my heart that one day, hopefully soon, I will hear him say that most precious word, Mama.

Tomorrow is International Epilepsy Awareness Day. Please share Calvin's Story.
Give to cure epilepsy: http://www.calvinscure.com

Version originally published 10.13.2010.

3.24.2012

lost to me

From time to time, and more often than I’d like—though simultaneously cherishing the feeling—I am confronted head-on with my loss, the loss of what could have been but will never be.

Sometimes simple moments appear and move past me, like the toothless little girl, skipping in rubber boots with her father saying to him, “it’s not mud, it’s watery dirt.” Other times it’s a young toddler sitting happy and confident, bobbing on his father’s shoulders. Still others might be crisp college-bound kids with skinny necks, neatly dressed, strolling slowly arm in arm with their parents down a tree-lined campus path.

These images, and untold others that I encounter every day, are reminders of what I will likely never experience with Calvin. In the beginning, seeing them was difficult to bear and I’d run for cover, sheltering painful sobs in my sleeve. Then I gradually realized, over many years, that life wasn’t going to stop for me. It would keep going on around me whether I liked it or not. Babies would be born, they’d learn to crawl, to speak, to ride bikes, to read, to one day have sweethearts, and so on. These are things to celebrate even if it isn’t my child who’ll be doing them, I say to myself. My brain now acknowledges this, though my heart has had trouble keeping up.

A young man I met briefly a few years ago, a former student of Michael’s, has reacquainted himself with us after my invitation to help me on a project. He came up from New York and spent a low-key weekend getting to know Calvin and hanging out with us in our home. He was simply a delight, courteous and thoughtful.

When the weekend was over, as I drove him to the airport, I embellished emotionally on Calvin’s birth and epilepsy. At the drop-off curb, I got out and hugged my new friend farewell. I was sad to see him go. As I drove away, a sting of sorrow, intertwined with a warm happy glow, twisted and tightened around my heart. I realized that this young man, who a handful of years ago was just a boy, was young enough to be my son. What a wonderful son he must be, I thought. My mind flooded with so many images of things lost to me because of Calvin’s circumstance, images that layered at first like a collage and then became a sorry stack of one faded snapshot after another in a chain link reaction of loss over time.

But then, I thought of him again, the young fellow, and how he has become a part of my life, if only for a moment. I feel so lucky for my fondness of him and for the mere fact of our meeting to exchange ideas and emotions. My loss has taught me to take nothing for granted and to see, with utter clarity, the gifts bestowed onto me by others. Perhaps what has been my greatest loss—Calvin’s lack of thriving development and well-being—will be in some weird and wonderful ways also my gain.

Though if I were asked, I’d always choose a healthy Calvin who could make some other mother feel the same way that my new friend has kindly made me feel.

Please share.
Give to cure epilepsy: http://www.calvinscure.com

Originally published 2.21.2011

May 2006 just hours before one of Calvin's first few seizures

3.23.2012

friday faves - dear calvin

Dear Calvin,

You’re getting to be such a big boy. It is wonderful to see you grow and learn. Mostly, though, it’s indescribable to see you smiling again and engaging with your world. I wish you knew how much joy you bring to me when I pick you up out of your bed and see that big grin come across your face—the one where you are anticipating snuggling in the warm bed with mama and daddy, getting lots of hugs and kisses.

I wish you could know how proud I am of you for all the things you are learning how to do, because I know it has not been easy. It is so much fun to follow you up the stairs and spot you on the way down, taking them one by one, holding on to the railing all by yourself. You are so good at it now! You really are doing an amazing job climbing into the tub—mostly all by yourself—holding on so well and balancing before you drop yourself in with a splash. What an accomplishment. And now that you are putting your arms through the holes of your shirt, practically by yourself, I can hardly believe my eyes. You astound me.

Calvin, I wish I could take away all of your seizures with the blink of an eye. I wish I could throw away all of your medicines. I wish I could make all of your headaches and dizziness and weakness go away. I wish all this could change so that your body and mind could feel free and clear, bright and brilliant. I know you would be capable of doing so many things that the seizures and medicine prohibit you from doing now. I am so sorry for the pains you must endure. It’s all so utterly senseless.

I know that you understand some of what I say to you—that is clear. But I hope you understand the most important thing of all—which is that I love you beyond measure and I would do anything for you. Anything.

Calvin, you are my hero and you make me want to be a better person every day. I know in my heart that you know me and love me. That is an amazing gift. Thank you.

Love,
Mama

Version originally published 02.04.2011.

Please share.
Give to cure epilepsy: http://www.calvinscure.com

3.22.2012

3.21.2012

grocery store blues

I have a love-hate relationship with the grocery store. It used to be a place that I dreaded for all of its glowing mothers toting healthy bouncing babies. Over the years, however, the staff has made our acquaintance and regularly shows great kindness and concern for our family.

Lately, and for reasons that are unclear but are likely seizure or drug related, Calvin has taken to manic behavior the moment I put him in the grocery store cart. Yesterday proved to be no exception.

Upon entering the store I bumped into an acquaintance—someone who has serially ignored Calvin as if he didn’t exist—and this time was no exception. Small talk ensued, I asked how he was and he said, "Oh, one step in front of the other." His comment struck me as some kind of tragic irony; he was describing exactly what I was urging Calvin to do, albeit against great stubbornness and refusal.

Mostly unruffled, we moved on to the produce department where Calvin began his usual antics which had everyone gawking. Somehow we made it successfully through the deli, the meat department, the dairy department and finally to the checkout lane, all the while disturbing the peace. By that time I had taken Calvin out of the cart and propped him on my hip—which is no easy task—in hopes of stopping his incessant screaming. Holding my 38 pound kid, who doesn’t hold on to me, and with only one hand free, I fumbled clumsily with the groceries. The plastic package of blueberries sprang open and they spilled all over the floor. Of course, I had chosen the express lane.

In order to finish paying I had to put Calvin back in the cart where he resumed his manic howling. One nice associate asked if he was okay and I told her I thought a seizure might be brewing. All screeching aside, she commented on how cute he was and stroked his thick hair as the other associate replaced my package of blueberries.

Thoroughly dejected and while exiting the store a middle-aged man walked past, glanced at my shrieking son out of the corner of his eye and pathetically remarked clearly, “Wow.” As he walked away I replied within earshot—in my best Valley Girl accent—“What-Everrr.”

By this point I was frazzled and nearly in tears but I successfully regained composure and pat myself on the back, for Calvin has given me the strength of an Amazonian woman, the patience of Job and the composure of a Buddhist Monk—at least sometimes.

Originally published 11.10.2010

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Give to cure epilepsy: http://www.calvinscure.com

3.20.2012

terms a mother shouldn't have to learn

ventriculomegaly
SUDEP: sudden unexplained death in epilepsy
cyanosis
status epilepticus
electroencephalogram
tonic-clonic
hypotonia
beta-hydroxybuterate
lobectomy
AED: antiepileptic drug
medically refractory epilepsy
intubation
polytherapy
phlebotomist
periventricular leukomalacia
hypoxia
tachycardia
post-ictal
comorbidity
oxygen desaturation
ataxia
epileptiform discharge
toxic epidermal necrolysis

3.19.2012

constant reminders

My eighty-two year old mother has Alzheimer’s. It’s unclear how long she’s lived with it, though she’s always had a bit of a poor memory. Since I can remember she had a bad habit of misplacing things, though at the time I figured that—what with raising six kids—it might have been due to the fact that she simply had too much on her mind. In any case she started taking medicine for Alzheimer’s about eleven years ago and she has been on the slow burn ever since.

During my recent visit to see her more evidence of that slow burn emerged. At one point, while looking through a photo book of a trip she took with my sister and me, I pointed to a snapshot of Caron and said, “Who’s that?” Mom replied in a most unsure fashion, “Soup?”

On one of my last days in San Diego we sat on a park bench overlooking the bay as seals and an occasional pelican floated by. In the span of several minutes Mom asked me how I’d met my husband Michael every ten or fifteen seconds. It became clear to me that her window of short-term memory, which in recent years has seemed as long as five or ten minutes, has gradually shrunken to little more than a blink. But she understood that I had come a long way to visit, that I was leaving soon and she told me often how much she was going to miss me. We held each others hand while admiring the low sun’s golden light reflecting off of the San Diego skyline and I wondered if this would be the last time she’d remember knowing me, if indeed I’d see her again.

There were times during my visit when I was reminded of how similar Mom’s memory is to Calvin’s, neither one of them very good; Mom’s because of a web of plaque build-up in her brain and Calvin’s due to the battering of seizures and the constant brain-bath of mind-numbing drugs. Both Mom and Calvin need to be reminded what to do when and what not to do. Like Calvin, Mom has to be told a million times not to do something even though she’ll be right back at it a few seconds later. Reminding her often is imperative if you’re trying to thwart a dangerous or unhealthy behavior, like eating pebbles or scratching sores into her skin, but appears totally in vain (and begins to feel something like self-flagellation) when aimed at more benign conduct. Sadly, it seems we can’t teach this old mama dog new tricks anymore, not with a brain like a sieve.

I remember when my dad moved my grandma from her Pendleton, Oregon home of fifty-plus years to a small room in one of our local nursing homes. She was ninety years old and had begun leaving her refrigerator door open, eating only half of her Meals On Wheels (saving the other half for the next day even though the meals were delivered daily) and soiling her undergarments, which she’d simply throw into a reeking pile in the basement. Dad used to drill her and get angry when she didn’t remember something, figured he could discipline her into remembering, thought it was a matter of will power or effort. I tried telling him that her brain was beyond the point of resilience or absorption, but his nagging her persisted and I could see the result in her sorry, confused expression as well as the tension in his own face. It made me sad.

A few years ago I heard of a study on Alzheimer’s patients. One group was shown a sad film, the other a happy one. The patients didn’t remember having watched the movies but the group who’d viewed the sad film felt sorrowful for a time and the others who had seen the happy film had residual feelings of joy. Neither groups’ individuals could identify why they felt the way that they did but it was clear that, though the memory of the films themselves had faded, the emotions they had sparked remained for hours. I think about that study whenever I get frustrated with my mom’s sometimes perturbing, repetitive behavior and, instead of snapping at her, I try to speak to her lovingly, kindly, patiently. Though paramount, at times it's not always easy—it takes effort—but it becomes more natural with practice and feels so much better to both of us.

I catch myself in similar situations with Calvin sometimes, such as telling him not to scream at the top of his lungs when he is obviously drowning in drug-induced mania. I make myself sick barking curt, angry words meant to derail his irritating behavior, yet to no avail. Instead, I end up more vexed—ugly—than if I simply tried, as Michael suggests, to let it bounce off of me like water off of a duck’s back. Recently, I’ve tried Michael's tactic and most of the time it works, producing a happier Calvin, a way more relaxed me, and a beloved dog that doesn’t have to shiver and sulk into the next room thinking he’s the one being scolded. All in all it means more carefree minds and bodies, less gray hair, fewer scowling wrinkles and much improved feng shui for this crazy old Kolster-Shake shack.

Please share.

3.18.2012

the face

I sit here every night feeding Calvin his dinner as if I were alone, music sometimes playing in the background, or the news, or nothing. The house feels empty except for his grumblings, his screams, the swishing sound of his fingers and wrists incessantly rubbing against each other, the knocking of his knees. All of these are likely side effects from the moderately high doses of three powerful anticonvulsant drugs we must give Calvin in an effort to thwart his seizures; a miserable trade-off and one that isn't completely effective. Wearisome, sometimes all I can do is stare at his face and sulk.

I don’t know Calvin’s thoughts and he doesn’t know mine. Never will. What a strange kind of mother-child relationship to behold, one in which neither of us can get into the other in that profoundly intimate way. Couldn’t coax it out of him if I tried. He’s locked into his own little wordless world, and if it weren’t for his howls, giggles and ear-piercing shrieks it might seem as if his lips were sealed. At times I resent him simply for his speechlessness, though it is no fault of his own, nor anyone else's.

So I ask myself, what is this all for? It seems such a colossal waste at times. I spoon food into a face. The face is accepting or refuses. The face chews and whines and laughs like a lunatic and drools like crazy until its chin is chapped and red and sore. But the face is mild as if a moon, like butter and cream, like a pool of crystal blue water and at times I drown in that pool as it reflects my own tears of frustration and sorrow.

But then the face—Calvin’s face—looks into mine, not quite into my eyes but almost, and beckons me. I obey and little hands wrap around my neck as he presses his soft face into mine and giggles. And what would I do without his precious face rubbing against mine, his moist open-mouthed kiss, teeth resting on my nose or cheek? What would I do if that face disappeared? What would I do if I couldn’t smooth my hands over his warm tummy, couldn’t feel the hollow of his delicate armpits, couldn’t caress his little knotted bellybutton, couldn’t hold his form close to mine like mothers do?

I think I’d shatter into a million tiny pieces of flesh and brittle bone, like a mirror that’s been smashed reflecting little glinting images of me and of Calvin in a mosaic of heartache, suffering and joy. I'd be wrecked because this wordless boy of mine encompasses me unlike any presence I could know or imagine. Because Calvin, in his simple way, is the vessel into which I pour my entire heart and soul, gush my grief, loss and anger, into which I spill all of my dreams of what could have been. They’re kept safe behind the face and eyes of my wordless child. And Calvin does all of this unknowingly. There is no need for asking or telling. There is no need for forgiveness. He doesn’t know the meaning of the words, just keeps coming back with his most beautiful face that gives me more love no matter how hard it gets.

Please share this story to help bring us one step closer to a cure for epilepsy. It's as easy as pushing a button.
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3.17.2012

infinite loop

One very cold night several weeks ago, while brushing my teeth, I was blankly regarding the surfaces in our bathroom, as one does in a crowded elevator, just passing the time as minty foam filled my mouth. I noticed some cracks in the thick paint on the back of the door, too many brown dog hairs littering the white tile floor and a speckled red ladybug crawling on the wall just above the sink.

The next day while I was taking a shower there she was again, tracing circles on what seemed to me an expansive plane for such a tiny creature. The bug trekked in a crescent, stopped for a second then resumed only to end up in the same place she had started on the flat, sweating wall. After a brief rest she repeated her loop a second and third time. The next day I found her upside down on the window sill.

This helpless, lost bug reminded me of Calvin and the infinite loops he seems to be making. These loops consist of large, concentric circles, the outer describing his development and activity over the course of years and the inner more literally characterizing his behavior in a given moment.

Calvin, who is eight, is engaging in virtually the same things as when he was three. He still loves playing with the wooden shutters in the bathroom, his passion for banging the kitchen cupboard doors has not waned and he continues to delight in bouncing and spinning in his industrial strength johnny-jump-up.

His inner loop is more literal. For instance, when Calvin is playing in the bathroom he rattles and mouths the shutters for a spell, turns and bangs on the toilet lid like a drum (we keep it down), triangulates to the sink and yanks on the edge as if it will open like the freezer, then pivots back to the shutters to start the cycle over again. Calvin will delight and engage in this repetitive cycle for a while, not unlike the ladybug on the wall, getting nowhere.

But, we indulge Calvin in his whims and fetishes in spite of its monotony because, after all, he is practicing his balance and coordination and he greatly enjoys these antics. And in our boredom and tedium, it gives us a chance to daydream and perhaps to discover and study beautiful things like ladybugs.

Please share Calvin's story and help bring us one step closer to a cure for epilepsy.
Give to epilepsy research: http://www.calvinscure.com

Version originally published January 2011.

3.16.2012

friday faves - loss

I think about losing Calvin a lot—probably every day. His intractable epilepsy makes the possibility of sudden death much more likely. And while the thought is not a very nice one it also serves to remind me to cherish my time with Calvin and to appreciate all of the wonderful ways he continues to enrich my life. Because of Calvin I often think more deeply about the loss that others suffer.

For years, some dear friends of ours yearned to have a child. The couple tried everything to get pregnant but met only with repeated disappointment. Finally, they turned to the world of foster care and one special day they brought home a beautiful baby girl, just days old, whose biological mother could not care for her. The joyous couple loved the new addition to their family. They delighted in feeding her, clothing her and doting on her for eight glorious months. As a result she was a very happy child who returned her parents' love in abundance; it was clear in the way she was gleefully mesmerized by them. But then one day, what had felt like some magnificent dream, in a millisecond became their worst torment; some blood relatives of the child, who had previously declined taking her in, changed their minds. The state swooped in and snatched the baby from their arms—the only mother and father the child had ever known—and drove off, depriving her of ever again seeing her parents smiling faces, hearing their soothing voices or feeling their loving embraces.

Still, I am moved to tears when I see photographs of the three of them together. I can never fully know their pain, nor the child's trauma, but I feel the stab of their sorrow. I know loss. It has weighed so heavily on me at times it has been difficult to breath. It has strangled my heart. But the loss of a child, I believe, is immeasurable and in no way can it be imagined.

Life can be unpredictable. It can turn upside down in a split second and become something utterly unrecognizable. It is impossible to equip oneself for this kind of tragedy and suffering. The only thing to do is to persevere, to love as much as possible from day to day and to appreciate all of the wonderful things that life has to offer, especially in case they disappear.

Please share Calvin's story with the world and help bring us one step closer to a cure for epilepsy. 
Give to epilepsy research: http://www.calvinscure.com

Originally posted in January 2011.


3.15.2012

stars (video)

Everything before your eyes—the paper and the ink, these words, and your eyes themselves—was made in stars: in stars that explode when they die.

—Martin Amis


3.14.2012

parents' perspective

Sometimes I feel like no one gets it. Yesterday I had to bring Elija to the ER because of some rapid seizures. I’m having a hard time getting him to take his medication because one of his new symptoms is tongue thrusting and excessive drooling. He has to take liquid Depakote three times a day, two syringes full each time. So clearly this is a constant struggle. I told the doctor how exasperated I am with the situation and said I wasn’t sure what to do. The doctor informed me, quite matter-of-factly, “Perhaps you should try harder.”

Waterville, Maine
 
Today Ronan had several rolling seizures, and when Rick swam with him to the opposite end of the therapy pool, this day before the day of the full moon, I imagined the day when Ronan’s body will not just float away to the other side of the pool—a sight I can barely stand—but will be gone


Santa Fe, New Mexico

Lisbeth was normal and healthy until the onset of her seizures at the age of six due to a traumatic brain injury caused by a viral illness. One of the most painful aspects of this turn of events was the before and after of her/our life. We lost the little girl that she was. It was a death of sorts.  And Lisbeth has had the torture of remembering her old self—popular, spunky, bright—as compared to her new condition with constant seizures, severe learning disabilities and deficits, and days on end of post-ictal fog.

Woolwich, Maine

When he had seizures (every night, multiple times) he would hold his breath. This breath holding would alert the heart to pump even more blood to the brain, making the heart increase in size until a wall finally blew out ... My wife and I live every day missing him.

Auburn, Washington

I heard Elijah behind the sofa banging around and I assumed falsely that he was playing with his toys. My boyfriend came in the front door and screamed. I turned around and there Elijah was, his face ashen gray and his lips blue. He wasn't breathing and his body was rigid.

Waterville, Maine

Poor guy seized when on hands and knees, crashed to the wood floor and broke a tooth - could have been worse as we all hear so often. It still sucked and we are freaking out about how to protect the little guy.

South Portland, Maine

Details about Eoin: no issues at birth, normal delivery. Began having seizures at 3 mos. following DPT immunization. Hundreds of myoclonic seizures per day. Lived this way until aged 7, when seizure type flipped abruptly to grand mal. About 80% of his seizures last longer than 30 minutes. They can go up to 90 minutes. He desaturates in many of them. Significant brain damage. Fourteen years old but developmentally about 3-4 years.

Newburyport, Massachusetts

Watching her adjust to the Keppra has just reminded me how powerful these drugs are. She was just so out of it during the day. She seems tired and a bit drugged. It stinks because I over-analyze all of her behaviors now ... can't just let her be tired, I am always reading into it. She struggles so much in school.

Cape Elizabeth, Maine

We tried weaning her off her med. Soon as she was off her med, the seizures came back and now she is on double the med that she was on and we still can't stop them. So frustrating. I can't figure out why the same formula of Keto diet and a certain dose of med didn't bring her back to the place where she was seizure free for so long.

Spokane, Washington

We gave her Diastat (rectal Valium) to stop the seizure ... the entire scene at the pool with strangers and my other kids freaking out just added to the situation ... I cannot separate the drama from the actual seizure ... This is awful.

Cape Elizabeth, Maine

Our daughter Savannah was healthy and typically developing until age two.  Our introduction to epilepsy came when we were abruptly woken to the sound of Savannah shaking and gagging.  We didn’t know she was seizing.  We thought she was choking.  Doctors called her seizures "attacks" and "spells," but never seizures, and we were repeatedly told she would outgrow them.  Savannah is now 18 and seizes daily.  She is intellectually disabled from the seizures and will never be independent.

San Diego, California

Please share Calvin's Story and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

drawing by Martha Miller

3.13.2012

so damn cute

The other night I could have sworn I heard Calvin beckoning me, but when I roused myself from sleep I realized that I wasn’t in my own bed, but rather in my brother’s house in San Diego. A distant foghorn blew faintly across the bay, a sound I remember fondly from my decade living in San Francisco, my beloved home over ten long years ago.

At seven a.m. Matt and I went to get Mom up to go to the bathroom to prevent a bed-wetting. He tussled her hair and she looked at me with a big surprised smile, forgetting that she’d seen me upon my arrival the night before. She threw her purple covers off and sat up on the edge of the bed, her narrow hunched shoulders on a petite frame smaller than I remember. Fine, white hair sprayed up in peaks on top of her head. She's so damn cute, I thought.

“How’d you get here so quick?” she asked.
“I flew in last night,” I replied, absorbing her warm smile. I could tell she didn’t understand how I flew.
“I flew on an airplane,” I explained, and she took a playful jab at me as if I’d been fooling with her.

We helped her shuffle to the bathroom in her slippered feet, her pink and purple striped pajama pants concealing thin wrinkled legs and knobby arthritic knees.

She asked again how long I’d be staying. I said, “about a week,” to which she brightened and chirped, “OH! I’m so lucky.” I told her that I was the lucky one.

After she finished with the toilet she washed the thin white latex gloves taped at her wrists meant to prevent her from obsessively picking and scratching sores into her thin skin. “Dry them off good,” I said, repeating the protocol that Matt had instructed me to do and thinking of all the similar kinds of damage control we have to do with Calvin.

I tucked her back into bed and caressed her soft hair. “I’ll see you in a couple hours, Mom.” She blew me a kiss, rolled over and went to sleep. Before leaving the room I glanced at the entries in a bedside journal that her new night caregiver has written about what Mom has said and done in her sleep:

At least I know where I am ... We'll go to San Francisco then ... Slow down, Sasha, slow down ... lots of giggling.

As I shut the door behind me I hoped she might continue dreaming of San Francisco, of her former companion Sasha the dog and of something else that might make her giggle.

3.12.2012

intuition

If you’ve ever seen the film Six Degrees of Separation you’ll know what I mean when I say, “I dated that guy.” In the movie, said guy is played by Will Smith, a young man who, to quote IMDb, “an affluent New York couple find their lives touched, intruded upon, and compelled by.”

The truth is that I was in a five-year relationship with the guy before I got smart enough to dump his sorry ass. It still boggles my mind that I stuck with him for as long as I did given the overt messages coming from some family and friends that he was a loser and not to be trusted. But I guess the reason I did is this: I am an inherently trusting individual, always wanting to focus on the good in people. But I’ve since acquired a bit of healthy skepticism and a sharply honed intuition that helps me in matters particularly related to my non-verbal, seizure-plagued, developmentally delayed son, Calvin.

The dude in question was, in all honesty, a smart, handsome, charming, funny, talented man. The problem was that he was never quite what or who he said he was. For whatever reason he spent his life trying to be what he was not; lying about his education, his travels, his accomplishments, his family, his virtue and loyalty, his age—you name it—and, as in everything, I eventually learned that he was also a deadbeat dad.

The day finally came, six months after I had confirmed—by his confessions—what I thought was the lion’s share of his deception, when I decided to call it quits and move out of our shared studio apartment. After all, he’d even been lying to our therapist. I remember wondering how I would do it. Where would I go? What would be in store for me? How would he react? Would I even care?

I took the day off from work, cried when four of my dearest friends showed up to help me move out all of my stuff. I slept on my sweet co-worker’s couch for a month, probably stacked up all of my boxes in her back room. I left my stereo behind and the fifties chrome and Formica table with its red vinyl chairs. But I took all of my CDs, which for years I’d been pathetically labeling with red dot stickers, so I'd know which ones were mine, in preparation for this day. I forgave him his debts, which were many. Then I started from scratch and, after a cathartic week's long float down the raging Colorado River in the Grand Canyon camping under a full moon, I began living some of the happiest, most productive, energizing and successful years of my life.

And though I'm still aghast that I stuck with it for so long I’m mostly just thankful that I made it out of the relationship virtually unscathed. One valuable thing I took with me, though, was a heightened intuition. I had learned in an instant—the moment I confirmed the first lie causing all five years of our relationship to flash before me—that my suspicions had been right all along. That in all the times when I wanted nothing but to trust, just as my gut felt things didn’t add up—and in the face of a man telling me I was paranoid while projecting his fears and blame onto me—I had known the truth and yet had doubted myself. But with the absolute truth exposed, my squashed sense of intuition inflated in a blink, like an indestructible helium balloon on the end of a hissing valve: big, shiny, bright, floating, fearless, like Jeff Koons’ stainless steel Rabbit.

This ironclad gut instinct has served me well, has saved Calvin from countless unnecessary tests, pain and discomfort. It has guided me in knowing what to do with his drugs when there are seemingly limitless options with little to no hard and fast evidence or studies to guide me in my decision-making. It has helped me when reason and logic are lost in a sea of treatment options, numbers, doses, seizures, weights, side effects and symptoms. It has helped me see through false friends, opportunists, manipulators, liars, phonies and bullies.

Mostly, though, I learned that just because one person who I thought I loved and who I thought loved me failed me miserably I could still trust someone with all of my heart and soul. Just ask my husband.
Rabbit by Jeff Koons

3.11.2012

running home

Within the first year or so that Calvin was diagnosed with epilepsy we made scores of calls to 911. Of those, he was taken to the emergency room of our local hospital about a dozen. At least half of those times he was transferred, via ambulance, to the Maine Medical Center which has a pediatric intensive care unit.

Those calls and visits were made because Calvin suffered large clusters of five or more seizures that recurred every 45 minutes to an hour and which often culminated into a prolonged seizure, once as long as 45 minutes. This condition is called status epilepticus and with it comes terrible risks. The longer a seizure lasts the harder it is to stop. Status epilepticus can cause brain damage and can ultimately result in the failure of vital organs which in turn can cause death.

Because of the frequency of those episodes I found it difficult to leave the house. Although I had the help of a nurse taking care of Calvin a few days a week I was petrified that the one time I'd leave the house might be the time that Calvin would expire. However, I also knew that I had to live my life, take care of errands, walk Rudy the dog or simply catch a breather.

We live just a few blocks from the college where my husband teaches photography. It's a nice campus with large white pine and maple trees, tangled magnolias, beautiful brick buildings, a stone chapel and wide open grassy spaces for me to stroll while Rudy chases squirrels.

I can remember, on several of these strolls, hearing the blaring siren of an ambulance careening down the main street flanking the campus and headed in the direction of our home. Instantly my heart began to race. Panic-stricken, I broke into a full sprint and did not stop until I had run several blocks and could see that the ambulance had bi-passed our home. Only then was I assured that Calvin was safe.

And although it has been years since Calvin's last transport to the emergency room my heart still sinks whenever I hear the sound of an ambulance.

Originally published in October 2010.

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Give: http://www.calvinscure.com

Bowdoin College campus

3.10.2012

those who danced

Those who danced were thought
to be quite insane by those
who could not hear the music.

—Angela Monet


The Dance by Henri Matisse

3.09.2012

friday faves - happy camper

So perhaps I bitch a lot and publicly grieve about the struggles I face in raising Calvin. But all in all I’m a pretty happy camper. It’s not clear to me, however, if that sense comes through in my writing, and so I have begun to ponder the question daily when I sit down at my computer to compose, edit and reread my blog posts. 

I am acutely aware that my entries deal with difficult, sad and often painful subject matter. And it’s because of that that I take measures to avoid a monotony of utter blackness while still deeply exploring and describing my memories and emotions, many of which are quite grim.

But besides being happy, I am—and have been since childhood—an eternal optimist and idealist. These characteristics may contribute, at least partly, to the fact that I have survived, and my marriage has thrived, in the face of the less-than-ideal circumstance of having a severely disabled child—despite the fact that I love Calvin to pieces.

As I write this I realize, too, that a few essential elements instrumental to my present happiness—which seems to bob like a buoy atop a violent, dark and unpredictable sea—is my sense of humor and love of a good joke or clever witticism. And, to be completely honest, as many of my closest friends will attest, when it comes to bawdy one-liners, I think I usually take the cake.

So I guess my secret to being a happy camper—which I am glad to share here—is to bitch, grieve, struggle, ponder, write, read, explore, dream, survive, thrive, love, realize, bob, joke and eat plenty of cake.

Originally published January 2011.

3.08.2012

little trooper

Yesterday.

The wifi isn’t available at the Philadelphia airport so I can’t post to my blog. Instead, I sit in an uncomfortable chair watching all of humanity (some of it anyway) scoot by with roller-bags in tow, some stacked high with slouching, zippered totes. An Asian woman pads along in Converse All-Stars followed by wrinkly men with their fish-faced wives, some topped with enormous sprayed hairdos, thick pancake make-up wearing flashy spangled pumps or ballet slippers. Legions of middle-aged men in khakis march and weave boasting five-o’clock shadows even though it’s only two in the afternoon. Out jumps a Hare Krishna wrapped in orange robes under a felted curry hat sloshing barefoot like a duck in his collapsing Sperry Topsiders. Slim women with jet-black manes swish by in black crepe pants and flip-flops. Young mothers push cooing babies in strollers. It’s the babies—the children—that punch me right in the gut. Even the infants appear more engaged with their world than Calvin ever has or likely will do, especially if he keeps having seizures.

In the sea of pilgrims I spot a girl of maybe four or five holding her father’s hand. Her other arm is pinched off just above the elbow, her pink coat tucked and pinned up neatly around the stub. I think of the memoir I just finished called Poster Child written by Emily Rapp. In it she recounts life growing up disabled having had her leg amputated when she was just four. Throughout its pages I winced at the hardships she faced in her childhood years and beyond: the surgeries, scars, bullying, discrimination, more surgeries, pain, cruelty, disappointment, fear, hopelessness, anxiety, ostracism.

Then my mind turns to Calvin who, just this morning, I kissed goodbye as I helped him step onto the school bus. Like Emily, he’s been through more in his precious little lifetime than many adults might ever encounter in theirs. He’s an effing little trooper, I think.

Calvin’s life flashes before me as female voices waawaawaa over the intercom and throngs of travelers blur past ushering wafts of reeking cologne, burnt coffee and greasy fast-food. In my mind’s eye I see Calvin boxed into his tiny plastic NICU isolette; a scrawny parcel weighing only four pounds and change who was ripped from my belly six weeks too early. He’s entangled with leads and monitors, IVs, splints, gauze, tape and breathing apparatus. In a blink I see his head sprouting a bundle of wavy wires like some Frankenstein kid who’s about to be jolted with a thousand volts, only it’s the other way around; his brain spiking jagged waves of electrical currents for the leads to detect and record. Then the image shifts to the endless stream of chemical drugs we’ve had to pour down Calvin’s throat trying in vain to stop his seizures; the hellish dietary therapies, the sleepless nights, the headaches, nausea, dizziness, poor balance, lethargy, fatigue, irritability, hyperactivity and any number of other side effects we’d never begin to know if he has experienced—is experiencing—since he can’t tell us.

Calvin has endured sticky eye patches meant to correct his strabismus, each having to be painfully removed several times a day. He’s been intubated twice during seizures—once horrifically without anesthesia—faced a painful circumcision when he was twenty months old and had eye muscle surgery at four. He has risked general anesthesia several times including during an MRI when he was just one. He’s had CT scans and nuclear medicine tests on his gut and urinary tract, sonograms on his hips and kidneys and countless X-rays. He’s battled bouts of pneumonia, bronchitis and multiple ear infections. He’s suffered scores of painful blood draws—at times prolonged—being stuck and bruised with needles in his arms, hands, wrists and feet. And last but not least he has been pummeled by torrents of vicious seizures that appear to have no end in sight. And yet, he endures all of this with relatively little grousing.

As the constant river of bodies streams past my feet I wonder, what have they all suffered? What will they suffer? And for an instant I am bathed in a feeling of deep empathy at seeing a doll-like child with beads of tears flowing down her cheeks because she doesn’t want to get on the plane. Her mother lovingly picks her up and the girl melts into a lazy embrace before drifting off to sleep. Tired and lonely, I can’t help but cry myself, and I don’t care who sees.

I slip my laptop back into its sleeve and shove it in my burlap bag glimpsing, for a moment, Calvin’s laminated school photo that’s peeking out the pages of Huckelberry Finn. Though sweet, it looks more like a mug shot than a back-to-school photo what with his droopy bespectacled eyes and slack, drooling mouth, and I am reminded of the young girl missing her arm. These kids, man, they’re all little troopers, I think. But Calvin, who’d be nearly impossible to take with me to visit my mom—and thus whom I’ve regrettably left behind—most definitely takes the cake. And what a bitter cake it is.

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photo by Michael Kolster

arrived

Dear Readers,

Have arrived in San Diego safe and sound. No wifi in Philly today so could not post. My apologies.

xoxo,
Christy

3.06.2012

totally spent

I’m spent—totally spent—exhausted, fatigued or whatever you want to call it when you have to take care of an obsessive-compulsive eight-year-old boy who—because of anticonvulsant drugs—drools waterfalls, flaps like a chicken with his head cut off, screams at the top of his lungs and one who must be watched like a hawk for any sign of a seizure. At times Calvin seems to have the strength of a giant and at others he wobbles around the house pigeon-toed and bauble-headed as if his shoes were tied together and his spine were rubber. I get sooooooo tired of having to put at least one hand on him or his harness, practically at all times, to prevent a bad fall. He's like Raggedy Andy or Pinocchio and about as cute, though at times, when I'm taxed and overtired, he does a good job of disgusting me.

I need a vacation. Badly. And tomorrow I'll be getting one ... sort of. I’m going out to visit my 82-year-old mother who has Alzheimer’s. She lives with my brother Matt and his wife. Like Calvin, Mom needs hands-on help while she walks and takes stairs. She might not understand a lot of what I am saying and will have trouble expressing herself. I’ll need to make sure she doesn’t eat the wrong things or eat too fast, to ensure that she chews her food well and doesn't put inappropriate things into her mouth like rotten fruit or packets of sugar as she’s been known to do. And at times I’ll help her get dressed and undressed, just like Calvin. Man, my brother Matt and I are living strangely parallel universes as caregivers of two big babies.

I’m at my wits end, and it’s pretty frazzled there. Not only is my hair slowly sprouting gray (though I like it) I’m also losing strands of it in Calvin’s tight little fists. My hearing is going too, because lately—since the last couple of antiepileptic drug increases—Calvin has been shrieking so loudly that my eardrums rattle. I kid you not. I think I’m going to have to wear earplugs all day long just so to hear myself think.

And lately I’m pretty sure I suffer from seasonal affective disorder. The gray skies and blinding snow (which Michael likes to call radioactive fallout) are hanging around way longer than feels healthy for this west coast body and mind. I need warm. I need green. It doesn’t help that Calvin cannot manage walking in boots much less on icy terrain or in a few inches of snow. So he and I are housebound much of the winter allowing a serious case of cabin fever to bubble and spike in my psyche.

But at least the days are getting longer and generally warmer. Last week I noticed some daffodil shoots coming up through the soggy ground. Soon Calvin and I will be traipsing around in the back yard. Perhaps this summer will be the one I’ve been dreaming about for years, a summer when he can frolic outside without need of a harness or a hand to hold. I’ve got major doubts about that happening, particularly as long as he has to take serious doses of three antiseizure drugs. But at least I can dream, that is if I'm not too pooped to just slip into some sort of coma.

Please share.
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photo by Michael Kolster

3.05.2012

completely retarded

We step up to the blue deli counter where Seth greets us with a pencil and small order pad in hand. “I’ll have an Ethanwich for here,” says Michael, as he grabs a Diet Coke from inside the refrigerated case.

We sit at a table against the wall watching customers come and go while waiting for our order. A familiar man reels through the door, his oversized winter coat draped lopsided on slouching shoulders so that one cuff hangs over his knuckles. Waving from across the room I say, “There’s Lloyd.” He sees us and awkwardly makes his way over, shuffling and wobbling in that unmistakable cerebral palsy way. Lloyd stands at the end of our table with a bewildered expression on his face, his eyes set between a pair of wrinkled parentheses like some Peanuts character. I smile up and say, “Hi Lloyd.” He tilts his head and with an open mouth makes a kind of happy growl. I give him a thumbs-up. After a slight pause he does the same with a warped hand that somehow mirrors his contorted body. We do a knuckle bump and he smiles.

I point to Lloyd and spell out his name using sign language. He smiles again and says, “Arrrrgh,” at which I gesture to Michael and spell out his name, too, with fist and fingers, though momentarily forgetting the sign for the “h”.

“You know sign language? When did you learn that?” Michael asks.
“I learned it as a kid, you know, because my uncle is deaf and retarded ... but just the alphabet and a handful of signs,” I explain.

Then I remember how my friend Monica and I used to sign to each other in church just to make it through the long, boring-ass services without slipping into a coma, how sometimes we'd practically pee in our pants trying not to giggle.

Lloyd ogles us as if we’re aliens from outer space, though I know we are familiar to him, then saunters over to another couple seated near the windows. The man greets him warmly though the woman seems less sure. After several minutes of Lloyd’s unrelenting stares they kindly say, “We’re going to eating our lunch now,” hoping he’ll get the hint and shove off. But he remains, fixed. They repeat themselves, perhaps unaware that Lloyd sometimes uses hearing aids and, even so, it’s unclear if he understands what is said to him. After a long awkward moment Lloyd releases his captives and moves on.

Seeing Lloyd reminded me of a scene in the matinee Michael and I had watched the previous day called The Descendants, starring George Clooney.

In the scene Matt King, played by Clooney, is driving while his teenage daughter Alex and her friend Sid sit in the backseat. Sid says something quite perturbing to Matt, who slams on the brakes and leans back to address the couple:
 
MATT (to Alex)
Your friend is completely retarded. You know that, right?
SID
Hey, my little brother’s retarded. Don’t use that word in a derogatory fashion.
MATT
Oh.
SID
Psych!  I don’t have a retarded brother!
ALEXANDRA
You suck, Sid.
SID
Speaking of retarded, I wish they would just hurry up. Sometimes I wait for them to cross the street, and I’m like, come on already! But then I feel bad.


I winced and laughed through the scene, found it amusing, pathetic and sad. I flinched at Clooney’s use of the word retarded. I chuckled when Sid lied about having a retarded brother. I winced again when Sid mentioned that he wished they’d hurry up, even though I understood his perspective, perhaps akin to those who watch and wait as Calvin and I slowly stumble hand-in-hand across streets and parking lots. And finally, I appreciated Sid’s regret at his own sorry feelings.

What a perfect scene, I thought, running the full gamut of emotions because of a single, seemingly innocuous word—retarded. Like Lloyd standing at the nice couple’s table as they first engaged and then waited—perhaps even miserably hoped—for him to hurry up, to disappear. I myself remember times in public, when struggling with a drugged-up manic, shrieking, drooling, hobbling Calvin, I wished that I could simply disappear, and then—like Sid—deeply remorseful for having had those thoughts.

Please share Calvin's story with the world. Help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

3.04.2012

family circus

Lately I feel like I’m a member of a bona fide family circus.

Calvin, our precious little “freak” screams like a raving lunatic much of the time, especially when a seizure is brewing and/or when we’ve had to increase his anticonvulsant medication. Even I find myself gawking at him in disbelief half of the time. He’s also a good contortionist, getting his foot into his mouth quite easily from almost any position. And he could rightly be labeled Beaverboy having been known to bite the bejeezus out of cups, socks, slippers, glasses, toys, windows, cars, books and pieces of furniture.

Then there’s Rudy the dog who performs stunts like eating the corn-based cat litter and the chewy little surprise treats that are buried in it. We nicknamed him Corndog after he ate enough of the crumbly, dusty stuff causing him to drink copious amounts of water, which in turn made him poop and pee on the rug, then barf on the floor several times before going outside to retch some more. Later he proceeded to lick up his frozen puke off of the snow. We could perhaps take him on the road like some carnie. I can see it now, in neon lights or chipped paint on a carved wooden placard right next to the 14 inch woman: Rudy, aka Corndog, world's stupidest dog. Or simply, Chowderhound. If it were easy to do I could change his show name on a whim, depending upon my mood, and switch Chowderhound to Nincompooch, Dimwitdog, Bozo the Dog, Numbnuts, Jughead or Lamebrain, all of which I love the sound. But seriously, Rudy is the best dog in the world and we love him dearly.

Our recent addition to the family is Neko, the kitty who showed up on our doorstep about a month ago and kept coming back. Recently she’s been in heat, writhing all over the floor like Shirley McClain does for Peter Sellers in the bedroom scene of Being There. She sticks her butt up to any and all things including furniture, Rudy’s meathead snout and Calvin’s spinning, stomping feet. Let’s see, what could we headline her as ... World’s Horniest Pussy(cat)? Yeah.

And I haven't forgotten about the biggest freaky geek of us all: me. Although I'm not much for biting off the heads of chickens I could go on the road as any number of aliases: The Bearded Lady (since discovering a few chin hairs of late;) Christy Pipes (an alias I’ve been known as in reference to my bulging biceps, now due to the constant lifting of Calvin;) Grumpy Gertie: girl with the most furrowed brow; Madame Moody: "She’s up, she’s down, she’s up—wait ... she’s down again;" or Military Mama: "She spits bullets, she hurls profanity like a flame-thrower, she drops F-bombs like hot potatoes, she launches obscenities as if it were raining missiles. Duck!"

About the only one who seems sane around this carnival of a home is my husband Michael. He jumps through hoops, carries us on his back like an elephant. He soothes the savage beasts, feeds his clan popcorn, acts the clown to make us laugh, keeps the big top over our heads, paints smiles on our faces, brings up the lights when it’s too dark, cheers us on and very simply keeps this circus of a family on the road and working like a well-oiled, albeit slightly insane, machine.

Please share this story to help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

3.03.2012

blood draw

One of the countless blood draws that Calvin has had to endure because of his epilepsy.
If you cannot view the video go to: http://www.youtube.com/watch?v=CHXbw0W5QS4

 Please share Calvin's story and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

3.02.2012

friday faves - shifting gears, changing course

In autumn of 2010 when I was on an Alaskan cruise with my sister and my 81 year old mother, who suffers from Alzheimer’s, I met another octogenarian and her husband. I had joined her during the busy breakfast rush, since there were no open tables left, and we talked and talked until her husband arrived and then the three of us talked some more.

We made such a nice connection, joking, laughing, sharing witticisms and hugging, and we have kept in touch. The other day she wrote telling me more about herself. She sent me one of her poems and talked about her writing group. She told me that in the spring she and her husband were going to be great-grandparents for a second time, and she went on to say:

As I write, I realize this may be a hard kind of news for you to read, and I almost deleted it. But then I decided I should leave it there because it is part of life, and you are forced to be a realist.

It is true, having a severely disabled child changes the course of one’s life in ways unimaginable until it happens. I find myself drifting off and dreaming of what the future might bring, and what it won’t. Of course there’s what seems obvious: Calvin won’t be going to college, may never have a job and most likely won't be able to live independently. It’s not even clear if he will ever be able to speak any words or communicate in some other fashion. And though I continue to have high expectations that he will walk by himself, I was certain he would have learned by now (I have no doubt that the anticonvulsant drugs, as much as the seizures themselves, have prevented him from meeting this milestone.) I realize that a serious relationship is improbable, if not impossible, for him and in any event not one that might produce offspring. What I worry about more, however, is Calvin simply getting the essential human touch—particularly in my absence—that all of us need as children and as adults. And yes, I have accepted the truth—but not without great sorrow—that I will never know the joy of being a grandparent.

But, as my dear friend said—and I am glad she didn’t delete it—it is a part of life, and I must deal with the cards that I have been dealt. So I change course—shift gears—to a slower, meandering, hilly path where the steep grades are difficult, though at times I can coast. This path of mine is obscure at times and holds surprise, both delightful and frightening, around every curve. But it is my path, and I’ll follow it, hand and hand with Calvin, with curiosity and wonderment until we meet the end.

A version of this post was published in December 2010.

You'd be amazed at what just one share of Calvin's story can do for epilepsy awareness. Please do.
Give to cure epilepsy: http://www.calvinscure.com