lao tsu

My sweet friend Gretchen wrote to me the other day:

“There's a little park not too far from our house, up high on a hillside overlooking Blakely harbor through the firs. I pass it sometimes when I run. It has a bell inside a beautiful, turning sculpture that rings when you've turned the sculpture nine times. There is a quote from Lao Tsu on it: 

I have just three things to teach: simplicity, patience, compassion. These three are your greatest treasures.

When I read your blog, I hear these treasures over and over in your writing. May the treasure you give others be returned to you tenfold.”

All I can say is that it has been, from Calvin and from all of you that I love.

bitches

Last June Michael, Calvin and I took our first trip in four years. 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 keep 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.

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 two 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 called 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

seeing the world

While I was walking Rudy the dog the other day I bumped into a fellow dog walker. To say that Dick walks his dog, however, isn’t totally accurate. Dick drives to the college athletic fields, parks, shuffles to a nearby corner of grass, slowly lowers himself onto the ground at the base of a tall pine tree and sits—almost lays. Nicky, his pint-sized mocha toy poodle, stays at the end of his retractable leash, which is attached to a clip on a tan canvas dog vest.

Due to a neurological disorder Dick is severely crippled, contorted. He is so stooped that his face hovers just a few feet above the ground, as if he is bending down to pick something up or tie his shoe, frozen in a perpetual crumpled upside down L. When I see Dick with his dog I often stop to say hello. I crouch down as far as I can get so we can talk face to face. As best he can he cranes his neck to the side so he can look me in the eyes. His are watery and blue, mine green. At ninety-one his hearing is impaired so I speak loudly and clearly. Dick is a veteran of war and has proudly shown me the memoir he self-published, bound and stacked in boxes sitting lonely in the back of his truck. “They’re going to make a movie out of it,” he once told me. I hope they do.

After our brief visits I find myself imagining how Dick sees the world. I’m curious if he regards beautiful decaying leaves floating in puddles intermingling with the muddy silhouette of his own reflection. Might he admire ants struggling over their rocky terrain carrying the day's haul? Does he recognize people by the shoes on their feet and the sound of their voice? Does he miss stretching his arms toward the sky regarding the clouds and glittering flocks of birds? It is impossible to know unless, of course, I ask.

Then I realize that I wonder the same kinds of things about my own son. How does Calvin see and interpret the world? I have no idea. I am at a total loss. I cannot ask and Calvin cannot tell me so I am left guessing.

But wondering, meditating, reflecting on these things is okay. I’ll remain close by my son’s side, nearly joined at the hip by necessity, and study his every move, reaction, interaction, smile and motivation. I will try as I may, somehow, to see the world through Calvin’s eyes, even through Dick's eyes, instead of merely through my own. No doubt I can learn something new.

ketoman

One evening, when I was seventeen, I entered a dark theater with a group of my best buddies. A warm waft of buttered popcorn trailed us to our seats. Handful by handful the salty puffs dissolved on our tongues, our large eyes affixed to the big screen devouring the new spoof Airplane! From the very first scene I laughed until I wept, practically wetting my pants and leaving the theatre with an achy face from smiling so much. Since then, I have probably seen the movie twenty times, and it has become a kind of a cure-all for the blues.

When my son Calvin was just two he was diagnosed with epilepsy. After over a year of several failed antiepileptic drugs, while Calvin suffered continually increasing seizures, I decided to pursue alternative forms of treatment. Early on in my research of epilepsy I had discovered the Ketogenic diet. Calvin’s neurologist had never discussed it with us, but I had gleaned information about it from The Charlie Foundation website. Although the diet was known to be quite challenging, I knew we had to give it a try, but I wasn’t sure who to trust or where to take Calvin for this rigorous treatment.

In my quest for the answer I began a brief email: “Dear Charlie Foundation,” figuring someone there could guide me in making my decision. I was aware that Jim Abrahams, the writer, director and producer of one of my all-time favorite film comedies Airplane! had started the foundation in honor of his son Charlie whose stubborn epilepsy was cured by the diet. I completed my message and tapped the “send” button, doubtful I’d get any reply.

Later that day, when I returned home from the grocery store, my husband told me that Jim Abrahams had called. "He wants you to call him back.” I was stunned, but still somehow able to dial the number. A modest voice answered the phone at The Charlie Foundation. It was Jim. We spoke at length about Calvin and the obstacles he’d met since he had begun having seizures. Jim’s voice was calm and soothing, his words more so. Speaking with him was like talking to an old friend, his genuine concern shined through from three thousand miles away. He gave me his best advice as to which neurologist should monitor Calvin during the diet.

Our correspondence continued over the next weeks, months and years, though sporadically. Primarily, we communicated via email, and I’d often attach a photo or two of Calvin and me, which Jim always warmly complimented.

Finally, after a trip to visit my mother in San Diego, I hopped a train to Los Angeles to meet Jim for the first time. He pulled up to the curb, where I was waiting, in his cool little electric car. As he stepped out we recognized each other instantly from photographs we’d seen. Our embrace was warm and long, as if we’d known each other for decades. To me, meeting Jim was like meeting kin.

 

I hopped in his car and he drove us to The Cheesecake Factory where he treated me to the biggest piece of New York style cheesecake I've ever had. 

 

I told him, "have some ... take a big bite!" and just as he was cutting a small piece off of the end with his fork, I surprised him by saying, "No, not that big!" He flinched, and then realized I was kidding. I had successfully pulled the leg of one of the best jokesters in Hollywood, and we both had a good laugh.

Though we still correspond I haven’t seen my friend face to face since our initial meeting, but I think of him often and fondly—so fondly. His words for me are sincere, candid and compassionate. When I hear his voice I don’t feel alone. His example is a gift that has shaped and inspired me to speak up, and loudly. This witty man of film, who has tickled the funny bone of hundreds of millions of popcorn-popping movie goers, has profoundly and forever impacted the world of children with epilepsy.

Thank you, Jim. We love you dearly.

devil incarnate

This morning I watched a trailer for The Sacred Disease, a documentary film being made about epilepsy. In it a mother describes how her teen aged daughter, who has been having seizures for fifteen years, has suffered over 27,000 of them—she counts them and logs them, like I do. Hearing appalling news like that is pretty unimaginable, unless you live it. Then, to see clips of her child, as a toddler, having tonic-clonic seizures, like Calvin, one has to wonder how they live through it—their little bodies and brains ravaged by electric tsunamis every month, every two weeks, every day, sometimes every hour—every minute.

But they don’t live through it unscathed. Their brains get fried by the seizures and drowned by the drugs. They fall deeper and deeper into mental and physical retardation. If they’re lucky, the don’t regress and their seizures don’t burn out of control and set them into a vicious downward spiral until they lose everything they ever learned, even how to breath. But it can happen, and it does, because there isn’t a cure for this relentless disorder. It grabs hold and doesn’t let go, like a pit bull in a ring. It wants to take over. Somehow the serpent finds a way to rear its ugly head even through the thickest medicated fog.

I want to beat the hell out of this loathsome beast, pound it into submission with white-knuckled fists, but all I can do is bash a pillow. I want to rip it out of existence with my teeth, pulverize it into tiny pieces that float away and dissolve, banish it from the earth, smother it with the weight of a hundred bodies. But epilepsy is insidious. It can’t be arrested that easily. We don’t have the proper tools to extract the vile canker, at least not Calvin’s kind. And so it roots itself, using our childs’ brains as its host, and sends its poisonous, pulsing tendrils deep into the delicate tissue of our beloved. It’s no wonder epilepsy used to be seen as demonic possession. It seems the devil incarnate to me.

Today is international epilepsy awareness day. In honor of the millions who suffer from the disorder, please make a kind gesture by sharing Calvin's story with another, either by posting it on your Facebook page, emailing it or by word of mouth. Help bring us one step closer to a cure. It's not hard. Just do it one story at a time. 

Prone to Epilepsy by Marilyn Manson

more than enough

Today I called the Disability Rights Center to drum up some help encouraging Calvin’s secondary health insurance to approve an adaptive bed. The kind woman on the telephone needed to take down some information about our appeal. I gave her the usual particulars—my name, phone, address, Calvin’s name and age. Then she asked me, “what is his disability?” I told her he had several and continued with the list, “ventriculomegaly, cerebral palsy, global hypotonia, pervasive developmental disorder, intractable epilepsy—“, “that’s enough,” she said, before I had a chance to tell her about his slow gastric emptying, hypothyroidism and visual impairments. I chuckled to myself and replied, “you're right, it’s more than enough.”

again and again

I’m nearly batting a thousand these days. I can see the damn seizures coming a mile away, at least usually.

Yesterday was just like the day before. Calvin was hyperactive and screaming during lunch and laughing inappropriately after. He gets what I call “seizure breath.” So I watch him while he naps and just like in the bad old days, five or ten minutes after he falls asleep, thumb in his mouth, he wakes up. I have to pull his thumb out of his mouth so I can see his dusky blue lips, blotchy red face and wandering eyes, but I know. He struggles to jam the thumb back into his mouth by reflex but I need him to breath. It lasts almost a minute then, almost as if nothing happened, he’s sitting up and pulling himself into a stand. I lay him back down, cover him up and he goes right back to sleep, this time for almost an hour.

So, we will increase his newest seizure medicine—again. Cross our fingers—again. Hope for the best—again. His balance has been getting worse with each increase so he’s a bit of a drunken sailor—again. And worst of all, without a cure, it’s more likely than not he’ll have a seizure—again. And again. And again.

Just now, after writing those last words, Calvin in his johnny-jump-up listening to one of the songs on his favorite Joni Mitchell Court and Spark for the gazillionth time, her familiar voice sings “again and again, the same situation for so many years . . .” Now that’s what I call irony.

photo by Michael Kolster

of mice and men

Lately I've been thinking a lot about the book Of Mice and Men, in particular of the character Lennie Small whose strength and size were not very small at all.

My seven-year-old son Calvin is getting bigger and stronger, even for a little peanut who doesn’t yet register on the growth chart. Since he started a new antiepileptic drug a couple of months ago, and for some unknown reason, his poor muscle tone has improved.

This growing boy of ours has always been very affectionate. He loves to be cuddled and he’s big on hugs. He’ll reach out with his little hands, puts his arms around my neck and knead my skin and, more often lately, pull locks of my hair. Sometimes he gets hold of my neck with such fervor that I feel he could, with a little effort, yank my tendons and jugular vein right out. “Be gentle,” I tell him, “be gentle.” Other times he’s boxed my ears or nearly whacked an eyeball out with an errant, though purely innocent, fist.

I recall imagining Lennie Small, the simple-minded giant in John Steinbeck’s novel that I read so many long years ago. In my mind I can see Lenny in an old weathered barn, sitting on a bale of dry hay with the lass whose long shining hair beguiled him. So impassioned by the young damsel’s beautiful locks that he was caressing, unaware of his own strength, Lenny could not contain himself and, when she panicked, he got spooked and inadvertently snapped the fragile girl’s neck as she struggled to get away.

I wonder if Calvin will continue to be oblivious to his own increasing strength because there's no doubt in my mind that he'll always love embracing. Perhaps one day I should consider chopping off my long auburn hair and opt for shaving my head bald, just to be safe.

moving target

What the hell is going on? The kid is having more seizures, no doubt about it. One at the beginning of the month, two last Friday, eight on Saturday, I suspected a couple on Sunday and one just now. Today I saw it coming. Crazy screaming at lunch followed by hysterical laughing. Not long ago we increased Calvin's newest antiepileptic drug in hopes of eliminating the one or two seizures he was having each month. No such luck.

It's a crying shame and a quandary. Is he having more seizures because of the ear infections? Is it because of the antibiotic we had to put him on? Is he having a paradoxical reaction to the new seizure medicine? Is the new seizure medicine lowering the clearance of the old seizure medicine, or is it simply that this epilepsy, this most heinous disorder, is a progressive disorder, a moving target?

He's having them at nap time again, about five or ten minutes after falling asleep. I think the nurse is missing them. Michael sees them only when I point them out. I am the only one who can discern them. They are stealthy, silent. Who knows how many he might be having at night, disturbing his slumber, his REM. It's probably why he gets up so often and why, at times, we are awake for hours.

Just when we think we're on to something and within reach of seizure freedom, the rug gets yanked right out from under our feet and we land hard. Never fails. We're chasing this damn moving target, these seizures, using a BB gun left handed with no sights. I wish I could blow it out of the water with a sawed off shotgun at close range and save my precious kid once and for all.

swimming circles

I grew up in a family of swimmers. One of my brothers swam his first race as a wiry four year old. I joined my siblings on our summer league team when I was six. At nine I started competing year round. At fourteen, still in junior high school, two friends and I earned varsity letters on the high school team. That was the year I started double workouts—dragging myself to high school practice in the predawn hours and then draining myself during the two-hour afternoon AAU workouts.

After my senior year in high school, having peaked as an All-American in my sophomore year, I was pretty burnt out. But a friend convinced me to join my college team, the University of Washington Huskies, a member of the Pac 10 conference.

I was one of the slowest swimmers, my heart not really in it. During the long distance sets I’d let myself get passed by a few of the six or seven others that shared the lane. I was ashamed for being a weeny and for not putting in my best effort. I just didn’t really care, and besides, it was painful, monotonous and exhausting and I’d already spent more than half of my life doing it, and for what? But I had committed, so I stuck with it. The other swimmers probably figured I was a dud, but I held my own in the sprints, though didn’t achieved what I could have, lacking the spirit and inspiration I had enjoyed back in high school.

During the two-week winter break our team continued to practice doubles. I spent nights at home with my family, but six days a week I drove across the lake to the Seattle campus for our two-hour morning practices. I retired to my empty dorm for lunchtime naps, then returned for our two-hour afternoon practices before heading home to eat dinner. It was a grueling, lonely recess. The last day of winter break training—the hardest—we swam a total of 15,000 yards, equivalent to nine miles—in one day. We were all spent, broken, wasted.

As a junior I transferred to a smaller university and relished two successful years with a more laid-back team. I finished my senior year with several all-time best performances as well as All-American and Team Captain titles. That year our proud men’s and women’s teams won the NAIA championship.

Sometimes, though, it all seemed so senseless, to run my body into the ground in hopes of shaving a few seconds—or tenths of a second—off of my best race. But after graduating college I came to realize that the most important lessons I’d ever learned were from a lifetime of swimming. It took hard work, dedication, patience, commitment and focus. I’d learned how to win humbly and how to lose with dignity. I perfected strategy, teamwork and goal setting. We swimmers saw each other practically bare-naked, emerging from sleep grumpy with no makeup and ratty bed-heads, yet none of that mattered. We were a team, all in the same boat, lifting each other up, pulling for one another.

In some ways my most important discovery from swimming was learning how strong and capable I really was, not just as an individual, but as a female, and not just physically, but emotionally. I pushed myself beyond the brink of exhaustion to the point of nausea and tears because it hurt so much, I beat the unforgiving clock time after time, I repeatedly bench-pressed more than the weight of my body.

The lessons I've learned from swimming have helped equip me for the job of raising my son Calvin, which is probably the hardest thing I’ve had to do in life. I can carry his slack weight on my hip with one arm, I painstakingly strategize his complicated health plan, I assert myself as his vicious advocate, I utilize all of my resources for the goal of helping him to reach his full potential, and I never give up no matter how much it hurts.

So I suppose, although I don’t necessarily have fond memories of the pain, I should be thankful for all those excruciating sets of ten two-hundreds and the thousands of sit-ups that my coaches made me do.

Summer 1970

silent spells

Yesterday, while on the phone with my brother, Calvin had his seventh of eight seizures. I was sitting on the lid of the toilet holding Calvin as he rattled the shutters on the window, something he has enjoyed thoroughly since he was two. With the phone squeezed in the crook of my neck I sensed something amiss so I peered around to see Calvin’s face, blotchy and flushed, his lips a dusky purple cast indicative of a seizure, a silent spell. I scooped him up and rushed to the couch, somehow managing not to lose the phone. I wanted to keep hearing my brother’s voice as some sort of emotional lifeline.

Calvin had as many seizures yesterday as he used to have in nearly a month. He’s been suffering from two ear infections and a cold, which can trigger seizures, but it was the antibiotic I was suspicious of. I looked up the drug online expecting to find seizures on the list of possible side effects, and I did. At high doses the antibiotic can cause seizures even in people without epilepsy. I checked the dose limits, worked some simple math, spoke with a pediatrician and decided to reduce his dose slightly. Then I crossed my fingers.

Forty-five minutes after we put Calvin to bed his blood-curdling seizure scream pierced the hissing white noise of the baby monitor. All day I had avoided giving him the potent rectal Valium hoping the silent spells would subside on their own. But, like in the old days, the cluster of seizures culminated into the kind of merciless convulsive tempest that we fear most. I grabbed the vial, cracked off the plastic lid, lubed up the syringe and delivered the foreign gel into my innocent boy’s body cavity. Within a minute the seizure had stopped, within ten Calvin was asleep.

Before this last seizure, as the setting sun filtered through a small stained-glass window, casting its warm glow onto Calvin’s pale face, I gazed closely and deeply into his eyes. He was lying on the couch recovering from the seventh seizure, his eyes unusually still, locked with mine, pupils large and glassy like a doll. A peaceful sadness soaked into me as I memorized his face for the millionth time. Sensing more seizures to come I wondered if he would survive the night or silently stop breathing and slip away. Calvin does not fear death, I thought, while at the same time he suffers much of life. I leaned in close and whispered, “if I have to let go of you, Calvin, I can. You’re my sweet, sweet boy, aren’t you?” and I kissed his cool smooth forehead as he wrapped his arms tightly around my neck.

photo by Michael Kolster

ominous storm

It’s been a long time since Calvin had seizures two days in a row, but until they are fully controlled, it’s bound to happen. Well, it just did.

The most common kind of seizure Calvin has now is tonic-clonic, or grand mal, a convulsive fit that involves the entire brain, halting his breathing for much of the two to three minute duration. Another kind that is more insidious is usually recognized only by me. On his pallid face develops a patchy flush, his body goes slack, his indigo eyes unresponsive and vacant. Yesterday he was dealt one of each. Today, even though we recently increased one of Calvin's drugs, the stealthy seizures—the ones that, if they didn't stop, used to land us in the emergency room—keep creeping over him like an ominous rolling storm.

In an attempt to arrest Calvin’s seizures we continue to inch up and up on antiepileptic drugs whose mechanism of action even pharmaceutical companies don’t fully comprehend. We only know that the drugs slow brain activity, which translates into slower development. With each dose increase Calvin’s balance, coordination and cognitive abilities slide. His development has nearly frozen since he was diagnosed with epilepsy five years ago. At seven years of age he’s still pretty much a big baby, and even then, many infants surpass his skill level.

At this point antiepileptic drugs are a necessary evil for Calvin. He’s not a surgical candidate, he’s too young for the vagus nerve stimulator—a kind of pacemaker for the brain—dietary therapy hasn’t worked, he hasn’t grown out of the seizures and, most importantly, we don’t have a cure. And considering the lack of public awareness and funding, we’re a long way from finding one.

Epilepsy is evil. It makes me angry. It ushers nausea. It makes me want to scream. It reduces me to tears. It's relentless. 

Please share Calvin’s story with others. Help bring us one step closer to a cure, one story at a time.

photo by Michael Kolster

sick seizures

Some folks might think I am paranoid about the common cold. Truth is they are right. Illness—be it pneumonia, flu or a simple virus—lowers seizure threshold and, thus, triggers seizures. For the past several days Calvin has been bothered by two ear infections and a cold but hasn't had any seizures—until today.

I am writing this on my friends' computer. Calvin and I escaped to their idyllic farmhouse refuge while insulation was being foamed into the walls of our home. Calvin is sleeping on their large, soft couch after having just had a two-minute seizure while napping next to me.

After playing with toys in his portable crib we snuggled together for a mid-morning nap. Just as he dozed off I noticed his irregular breathing, so I gave him more air, opening a space between the lofty coverlet and his congested nose. Suddenly his breathing stopped, he became rigid, trembling. A blue cast spread over his fingers and face as he let out a macabre cry that I know all too well. "It's almost done, Calvin," I always say, caressing him, even if I know that it's not.

The other night a friend had joined me at home for dinner while Michael was away at a workshop. She had mentioned that her kids were sick and I had told her that Calvin was too. When I greeted her we hugged and I said "no kisses" to avoid getting her kids' illness in the event it was a different strain than what Calvin had and knowing that illness and contagion often precede symptoms by days. When she reached for my glass to pour me some wine I swiftly intercepted her so she didn't touch it. I felt slightly awkward about my paranoid behavior and felt I must explain further—that it was because her kids were sick. “So is Calvin,” she said. “When your kids get sick” I replied “they just get sick; when Calvin gets sick he gets seizures.” Knowing she is acutely aware and sympathetic to our circumstances with Calvin, I trust she understood my frankness.

I do go to lengths to prevent Calvin from getting sick. I wash my hands copiously, sneeze and cough into my elbow and avoid physical contact with those who are sick or whose children are sick. I have seen Calvin have back-to-back viruses for eight weeks straight, causing numerous seizures. Seizures are difficult if not impossible to prevent, but I'll be damned if there isn’t something I can do to save him from even one. Perhaps I’ll risk offending friends who have a cough. Maybe I’ll insult a nurse who I see hasn’t washed her hands before feeding Calvin. But whomever I might rub the wrong way as a result of my caution and directness likely hasn’t seen their kid suffer hundreds of senseless seizures or is simply ignorant to the misery they cause.

Please share Calvin's story with others. Bring us one step closer to a cure for epilepsy. It's not hard, just do it one story at a time.

warm embrace

At five this morning Calvin awoke coughing and whining. He’s got two ear infections to deal with, plus some potent antibiotic and his usual regimen of antiepileptic drugs that often appear to cause him headaches. I took him into bed with me, Michael still away at a photo workshop.

Most mornings, when Calvin wakes—and he wakes early—he is too ramped up to go back to sleep and I’m too exhausted to get up. So he spends the next half-hour or so rubbing his head in his hands or thwacking it on the end of the crib. Yesterday, the entire top of his head was a literal nest, all kinky and puffed up like the inside of a fiberfill pillow, and I half expected to see some sort of critter taking refuge in it.

In bed, Calvin wrapped his arms around my neck wanting hugs and kisses. I showered him with them like I always do—ears, cheeks, shoulders, neck, nose, eyes—and he squeals with delight. He seems to like the weight of my arm on his curled up legs and my heavy hand on his hip, his feet wedged under my side. We caress each others warm backs with soft hands. Then he shoves his thumb in his mouth—my forehead to his—and we both fall asleep, his arm still draped around my neck. It’s one of the best feelings in the world—though rare these days—to doze and dream and wake in the warm embrace of his little loving arms.

tonight japan

Last night, for the first time, I saw news coverage of the tragedies in Japan, though I’ve been following stories on the radio. It’s been impossible to envision the scourge from an earthquake of such unprecedented magnitude, an obliterating tsunami or a nuclear meltdown, much less all of these tragedies in tandem, knotted up like a colossal ball of molten steel, stinging salt, twisted iron, earth and steam. It’s nearly incomprehensible to imagine being struck by homelessness in an instant—in freezing weather—losing every worldly belonging, or perhaps even an entire extended family, in one crumbling jolt or one mighty crash of a merciless wave. Most difficult of all—and impossible for me to conceive—are the fears and ills of an insidious radioactive mist.

A longtime friend I met while backpacking in Europe when I was twenty-three lives in Yokohama with her husband and two children. She told me she has to cue up for provisions and that electricity is limited. She asked me to pray for her family’s safety.

Another dear Japanese friend lives here in the States but her parents, brother and pregnant sister-in-law live in Japan. I worry about them, too. She tells me they are okay but has expressed her deep sorrow at what is happening in her country.

Again, I meditate on how fortunate we are to be safe and warm and cozy in our ample homes, enjoying short lines at the grocer, able to purchase—at the tips of our fingers— any food we can imagine, then jump in our cars and motor on home to unload our spoils. We will not freeze tonight. We will not go to bed hungry. We are privileged beyond any reasoning. Am I so deserving?

Tonight, like last night, as I shut my eyes I will allow my day's stress and frustration and worry and fatigue to drain out of me, like the sea receding from a rocky shore, and I will focus instead on others, and tonight, Japan.

sibilngs

I grew up the youngest of six, four years between me and my next older sibling, the other five kids smashed within six years of each other. Being the youngest, and the runt of the litter, meant I got a lot of love and affection. One brother liked to feed me and change my diaper, even though he was only six years old. But being the last of four boys and two girls also meant I was on the receiving end of plenty of teasing and torment.

My sister likes recounting the story of her and her friend coming home late at night, waking me up to get ready for morning swim practice and, still half asleep—being the obedient child—I followed her order. When I realized it was the middle of the night I started to cry. I was labeled forever a “whiner”.

One brother in particular liked to make me sandwiches, especially ones with lots of knuckles. He gave me my share of noogies and charley horses. Recently, he proudly and humorously recalled the time he hit me, once sharply in each bicep with a protruding knuckle, paralyzing both of my arms leaving them limp and useless at my sides. I was a tough and rumble tomboy, however, and I took my revenge delivering my best sucker punch or surprising him with a bucket of cold water in the shower.

On one memorable night out to dinner, the eight of us sitting around a large table, Lazy Susan in its center, one of my brothers lovingly coated a toothpick with hellishly hot Chinese mustard then disguised it with sesame seeds enticing me to lick it off. I shrieked; I was only four.

Sometimes my siblings feigned altruism, like paying me fifty cents to mow the entire lawn, all one plus acres of it, or kindly passing me the non-fat powdered milk when there was no more than an inch of sludge left at the bottom of the plastic container.

On occasion, however, my siblings were wonderful, letting me watch The Partridge Family instead of Kung Fu, or driving me to the hospital when I fell off of the swing and broke my arm, or teaching me the fine art of thrift-store shopping or inspiring me to swim the fastest race of my life.

Thanks to my sibs, and luckily for Calvin, I never give up in the face of adversity. I roll with the many punches that life delivers, I never throw in the towel and though I get knocked down, I get right back up and I never get knocked out. And believe me, after years of practice, I’ve developed a pretty mean right hook, so watch out.

joe egg

Two weeks before Calvin’s birth we learned that the lateral ventricles in his brain were enlarged, though no one could tell us why. After a premature emergency cesarean Calvin battled the consequences of cerebral palsy, global hypotonia, slow gastric emptying, ocular and cerebral visual impairments and gross developmental delay. As the days, weeks and months passed our son’s future seemed increasingly bleak to us.

Then, when Calvin was just two he was diagnosed with epilepsy. We had already grappled with immense grief, loss, disappointment and worry over the well being of our child, but the seizures and drugs proved to dwarf everything we had encountered up until that point.

A year or two after scores of seizures and several failed antiepileptic drugs a friend told us about a play at the Mad Horse Theatre in Portland. It was called A Day in the Death of Joe Egg. It claimed to be an extremely black comedy about the struggles of a couple whose only child, Josephine, or Joe, suffered from severe cerebral palsy and “fits”, or rather, epilepsy. Michael and I were slightly dubious about such a sensitive subject being labeled comedic, but we sorely needed a night out on the town and a good laugh. Maybe it would help put our situation in perspective, we thought.

The theater was small, a square stage centered between three sides of tiered seats. As act one began the audience seemed gagged, a few lonely chuckles escaping into the silence—a titter behind us, a muffled snicker cutting the hush of darkness from somewhere down in front. Out of the corner of my eyes I panned the dim house of drawn, sober watchful souls sitting upright and military in their seats, hands clasped hidden in their laps. I wondered how many of us had children like the little girl in the play. She was beautiful and lithe, with long blond hair brushed straight and shining like a sheet of waxed paper, her small still body enfolded awkwardly, slanted in her cumbersome wheelchair. Her slippered feet turned askew in their rests, blue eyes staring off vacantly into the distance. I wondered if the others knew what it was like.

After the first act I breathed deeply and exhaled slowly. It was hard to watch, though validating, and the release of laughter helped to relax my tension.

Then, suddenly, I was shocked into silent tears. Just as the lights were coming up the little blond actress skipped onto the stage announcing the intermission. I swallowed hard. The harsh juxtaposition of what had been a limp, listless child, imprisoned in her wheelchair, so abruptly and unexpectedly come to life in a rush—and with such vigor—then to practically taste the crisply articulated words flowing from her blushing lips, was stunning and bewildering. This is how she should be, I said to myself, this is how all children should be. It’s not how my child is or will ever be. My heart was struck solid by a blow from behind and I wasn’t sure how I’d recover.

But Michael and I both made it through—and changed—forever changed by the little blond girl in Joe Egg and by our own precious Calvin, no doubt beautifully asleep waiting for us at home.

A Day in the Death of Joe Egg

sleepless nights

Oh, sleepless nights. I’m not sure how I get through them and continue to function, though to be honest I don’t function very well lately, succumbing to the grumpies often.

One night last week I got up twelve times to lay Calvin back down, cover him up—since he can’t cover himself—and hope he’d go back to sleep, but to no avail. He was awake from around one thirty until almost five, just like the night before. And the months’ nights before that haven’t been much better. Much of the time he spends banging his head on the end of his crib with an insufferable thud, the crib squeaking and complaining as if threatening to collapse. He’s got a red rash on his forehead to prove it, right below where he’s incessantly rubbed and broken off a tuft of his hair. I’ve put a large firm velvet pillow against the headboard to deaden the thumping, but still the racket broadcasts straight into my brain through the baby monitor that sits menacingly on the nightstand near my head. I’ve even got stereo as his pounding thunders through the wall. Thank goodness Calvin doesn’t cry or scream at night . . . at least not yet.

When Calvin was just a baby he slept through the night peacefully and with ease—for years. While I enjoyed restful nights I never took them for granted because, since Calvin was born, I have learned that there are no guarantees in life and not necessarily happy endings.

When Calvin started having seizures at two years of age, and after the first few antiepileptic drugs failed, his tranquil sleep, and thus my undisturbed slumber, went out the window. I can’t remember the last night that I didn’t have to get up at least once or twice to encourage him to go back to sleep. But as all things in life change perhaps some day there will be an end to these sleepless nights, if only for a time.

photo by Michael Kolster

philip

The following story was written by one of my husband’s former Bowdoin College students who has worked with elementary school kids teaching ecology and a love for the outdoors by taking students to the forest, tide pools, salt marshes and beaches:

One of my favorite stories involves a ten-year-old boy, Philip, who was fairly wheelchair-bound because of cerebral palsy.  Philip could use a walker, but after about five to ten minutes he would be tired and have to switch to his wheelchair. A lot of the trails we went on weren't exactly friendly for walkers or wheelchairs, so I spent a lot of time holding on to Philip's hands acting as a human walker as we went up and down stairs, over roots, across streams, and through mud while someone else carried his wheelchair.  He couldn't communicate very well, but I was amazed by his curiosity, trust, and sense of humor. 

On our last evening, I did a night hike, taking my students out into the forest without any flashlights or headlamps.  Our group walked an old gravel road that curled up the side of a hill.  I had a couple of high school students helping me out, so one pushed the wheelchair while the other carried the walker.  Philip's teacher was there to help, too. Their hard work paid off toward the end of the night hike when it came time for the lone walk. Each student walked by themselves, one at a time, from the cabin leader to the naturalist (me), 50-200 yards down the trail.  The lone walk is required of most students, but we weren't so sure about Philip.  We talked to him for a while, and he assured us, in his own way, that he wanted to try. 

Philip was the third or fourth student to do his lone walk.  The cabin leaders helped him out of his wheelchair and got him set up with his walker.  He shuffled forward about five steps, then looked back and scooted backwards a few steps.  Then he started up again.  This time he was more confident and didn't look back . . . I could hear his walker wheels scattering gravel as he raced toward me.  Philip was cruising with a big smile on his face.  Luckily it was dark, so none of the students could see my tears.

I think about that moment a lot.  I wonder if it meant as much to Philip as it did to me. The hours I spent with him that week made me a better person and reinvigorated me as a teacher.

Written by Aspen Gavenus

pint-sized monster

Sometimes I can’t believe I have a retarded kid. He hasn’t yet been officially diagnosed as such, but it is a fact that his development, both mental and physical, is retarded—delayed. And that developmental gap continues to widen as his vicious seizures persist and as long as he is sentenced to a life of taking potent, mind-altering, developmentally disabling drugs.

At times, when Calvin becomes hysterical, regarding him nearly makes me ill, especially when he screams with that vicious, crazy look in his eyes. Furrowed brow, fingering incessantly, I hardly recognize him. At these times he won’t shut up. When he is like this he does not appear human, but more like a rabid beast howling—a pint-sized toothy monster—and it is difficult to bear. Lately he is like this a lot.

I find myself either staring in disbelief at my little aberration or averting my eyes and trying somehow to drown out the irritating and endless stream of piercing screeches that emerge from between his clenched and grinding teeth. I can’t tell if it’s excitement, over-stimulation, discomfort or simply wanting out of his high chair, car seat, crib or jumper. I do, however, know the antidote—though at times I lack the energy—which is to pick him up or walk him around, his harness secured and tightly in our grasp to prevent a bad fall. He instantly morphs into the kid we know and love, happy and smiling as he explores the house, plays with his rattles and toys and tries to chew on everything he can get in his mouth.

I believe the origin of Calvin’s mania is drug-induced. I can only hope it is a reversible condition if he can ever come off of the medications and be free of seizures. Until then, and at moments, we have a three-foot elfin monster on our hands who is growing by the day.

to feel existence

"But this is human life: the war, the deeds, the disappointment, the anxiety.  Imaginations struggles, far to nigh, all human; bearing in themselves this good, that they are still the air, the subtle food, to make us feel existence.  This is the "goal" of the soul path - to feel existence; not to overcome life's struggles and anxieties, but to know life first hand, to exist fully in context."

 - Thomas Moore -

photo by Michael Kolster

tinker and toil

The last thing I wrote in Calvin’s journal yesterday was “suspect seizure tonight.”

I had called my father-in-law in tears after Calvin and I had returned from a stressful trip to the grocery store. I told him how Calvin’s recent screaming is grating on everyone’s nerves—me, Michael, the nurse, Rudy the dog, and likely several patrons and cashiers at the grocer. Yesterday it culminated into an exasperating apex. I tried holding Calvin’s face in my hands, with my forehead to his forehead, telling him to be quiet and not to scream in the store. Nevertheless, the manic behavior snowballed into an avalanche of horrific shrieks simulcast into the salt-covered parking lot. As I strapped Calvin into his car seat I held his face some more and told him to stop. He didn’t. Utterly defeated, I trudged to my side of the car and caught eyes with a woman, having just passed us by, as she entered the store. She was gawking at the spectacle, which was us.

Calvin’s manic behavior has worsened in the past several months. My gut tells me that the hyperactivity is drug related, that one of his seizure meds could be the culprit. However, since there are no guarantees of what mechanisms are at work here, we are left to just tinker and toil.

And, as I had expected, at two-thirty this morning I awoke to the sound of Calvin’s constricted breathing, as if his face was mashed into his pillow. As upsetting as any, his seizure was slightly less convulsive and a bit shorter than most—something to celebrate. Though, the celebration may be short lived because, in an attempt to improve his manic behavior, we’ll be reducing one of his drugs, and with that change we’ll likely see an increase in seizures.

So we’ll continue to tinker and toil putting strange toxic, mind-altering chemicals into our child’s precious body and brain, hopefully not completely in vain.

Please share Calvin’s story on your Facebook page, via email or simply by word of mouth. Help bring us one step closer to a cure for epilepsy. It's not hard. Just do it one story at a time.

imagine and dream

To have a child like Calvin, though he is loved beyond measure for who he is and who he is becoming and for his pure spirit and unconditional love, is forever punishing, particularly to see him suffer relentless seizures and setbacks, but also in the way his circumstance has imposed great limits on our family life and what we thought parenthood might be. It’s impossible not to wonder what the hell happened, and so we imagine, we dream.

Some have told me how unfair it all is, but what it really comes down to is the sorry truth that bad things just happen—and they happen to good people. Period. No ifs, ands, buts or whys. They just happen—no one to blame, no reason. It’s just the work of nature going about her business.

One of my very closest and dear friends had a beautiful, perfect baby girl who was stillborn. I say this with delicacy, knowing in the core of my being that no words can describe that kind of pain and loss. She had the same name as an elegant, aromatic flower. With eyes closed I have imagined this precious child time and again—flawless fair skin, supple body, shining wavy silver-gold hair shimmering in the breeze, a buttercup glowing under her chin—an exquisite child to behold and mirroring all of her mother’s extraordinarily beautiful features. She will be with her mother always.

Another friend and her husband suffered the same pain, their daughter lost to them at birth and also named after an elegant, fragrant flower. I have dreamt of her as well, lovely and glowing, cocoa eyes trimmed with dark eyelashes, full lips and thick wild ringlets of mahogany cascading over her shoulders like a waterfall, she holds a seashell to her ear, wide-eyed. She lives on in her parents and her brothers, too.

And yet another, a son, tiny and frail born long before he was ready to withstand the world but amazing, beautiful and loved—held for a moment in his father's strong and gentle arms. In my imagination I can see him, in spring, turning somersaults down a wildflower encrusted hillside on the majestic mountain he was named after.

In my mind I also imagine Calvin, in another world—another time—his thick auburn locks ruffled by the wind, lithe bronze limbs carrying him bounding across a meadow, grasshoppers springing up like jack-in-the-boxes as he pounces on one, cups it in his small hands and then opens them to proudly reveal his surprise. It jumps out, never to be caught again—these images and dreams of Calvin, of our sons and daughters, never to be let go.

photo by Michael Kolster

still winter

Alas, March in Maine. The other day it was seven degrees and windy with three to five feet of snow still on the ground, piled white and pristine in the backyard with sooty, crusted banks fringing the roadside. Pitted sheer-ice sidewalks, embossed inch deep with boot prints and scarred by craggy ruts, are just beginning to reveal grass, matted yellow and muddy, as the days slowly warm and then freeze again at night.

As a kid my town enjoyed little snow compared with the hammering we get in the northeast. But it used to get cold enough for my dad to water down his hand-poured cement basketball court and transform it into a makeshift hockey rink.

Not far from our home idyllic Lang’s Pond rested in a hollow surrounded by grassy hillsides. The waterhole was small and in the spring edged with hundreds of polliwogs that weeks later lost their tails and became thin-skinned slimy frogs. Digging my feet into thick silken mud oozing between my toes I’d sit at the water’s edge with my jeans rolled up playing with sticks, throwing pebbles and trying to capture frogs. In a favorite hideaway, the luxurious shade of a large weeping willow leaning heavily over the pond, its graceful tips lightly brushing the glassy surface, cooled me as tall grasses obscured my presence.

In the winter when the pond froze over my mom and dad would pack us into the truck, our scuffed-up skates tied together by long ratty laces and draped lazily, clanking, over our shoulders. Our hot breaths puffed into the frigid air, beads of moisture coating the windows in a thin bubbly gray haze, the heaviest drops tracing wavy vertical stripes on the glass. I’d make smiley faces with my finger and they'd begin to cry.

Out on the pond six or eight excited kids skated circles and loops, picked sharp stops into the thick milky frozen slab. "C'mon mom" we'd shout, and she'd give it a try as we formed a happy circle around her, the ice groaning and creaking below the weight of us. I was afraid she might break through; I think she was too. The hollow thud and crack of clashing hockey sticks echoed eerily into the pond’s murky depths, the sound dampened by a low gray sky and a blanketing of snow.

After skating my dad took the older kids hooky-bobbing, traveling slowly down a desolate ice-sheathed neighborhood street, several teenagers hanging like parasites off of the truck’s low back bumper, boots scraping tracks into the dusted ice, the kids' tin laughter ringing and tumbling behind them down the lane.

Winters now are mostly spent indoors. Calvin cannot walk in snow or on ice and chills quickly from his lack of activity and poor circulation. He seems oblivious to the snow and grimaces at the cold, so we stay out of the elements. Perhaps one day, if we can reduce his seizure drugs or—better yet—stop them all together, his balance will improve well enough for us to go outside and play in the snow as it falls quietly in the still frozen air.

food for thought - part three

When Calvin was three, a year after he started having seizures, we consulted a neurologist in Boston and started him on a new low glycemic index diet aimed at curbing them. A year later, after little to no improvement in his seizures, we put Calvin on the restrictive Ketogenic diet, a rigorous and exacting high-fat, low-protein and low-carbohydrate diet developed in the 1920’s which is known to eliminate seizures in a small percentage of children who try it.

The diet was unpalatable, difficult to digest and nearly impossible for Calvin to engage in—the fun tasty finger foods all but disappeared from his menu. Instead of enjoying cheese puffs and graham crackers, in addition to home-puréed vegetables and minced meats and seafood, Calvin mostly ate mayonnaise, oil, butter and heavy cream with minuscule amounts of protein and even smaller portions of fruits and vegetables. But Calvin was a trooper and he slogged through, greasy meal after greasy meal, while I slogged through weighing each morsel of food to the tenth of a gram, equivalent to about one drop of olive oil.

After three years of struggling on these diets, and coinciding with a serious drug withdrawal, Calvin began to refuse everything but Greek yogurt, (mixed with olive oil to comply with the rigid fat to carb ratio.) Calvin, five years old and thirty-five pounds, lost five pounds in a few stressful, seizure-ridden, seemingly endless weeks.

Needless to say we were forced to change the course of Calvin’s dietary regime, though it took over a year to get from there to where he is now. His foods are still carefully measured but the big difference is that he enjoys eating and he hasn’t missed a meal in over a year. Not one. Instead of a thimble-sized piece of strawberry, he gets half a cupful. Instead of two large spoonfuls of mayonnaise and a tiny portion of diced chicken he gets several spoonfuls of diced chicken and one spoonful of mayo.

Calvin, having struggled with food, digestion, medicine and seizures for most of his life, still barely registers on the growth chart. But that’s Calvin, my one and only little Peanut, and he loves to eat. Now if we could just get him to stop chewing the furniture and eating his shoes.

photo by Michael Kolster

food for thought - part two

I remember strangers mistaking Calvin for a newborn when he was several months old. I hated being asked his age. I could never bring myself to tell the truth for fear of some sort of judgment, so to avoid lying, either I pretended not to hear the question or I’d say something vague like, “oh, he’s a few months” even when he was almost a year.

Calvin has never registered over the third percentile on the growth chart. It was clear from the very start that some sort of gastrointestinal distress made eating and digesting uncomfortable, which likely caused his poor appetite. And yet, at six months of age, when we initiated rice cereal, and then mashed avocado a bit later, he seemed to enjoy them. However, to get him to open his mouth we had to whisper funny things like “ricecerealisveryverygood” emphasizing the “sss” sounds. He’d smile, open and we’d quickly spoon it in.

Calvin’s low muscle tone made it difficult for him to digest food and easy to spit it up small amounts, irritating his esophagus and causing him pain. It seemed he also suffered from acute nausea, and though we could never be certain, it was a hypothesis that made sense. For hours after meals and after sleeping Calvin cried and spit up and cried and spit up. His slow digestion made bacteria and bile back up in his stomach causing him to feel wretched, and lying down made it even worse. His only solace was to be held by us until it passed. We tweaked his diet with extra fiber and pushed the liquids, tried antacids and prescription meds, and messaged smooth circles on his tummy to coax the gas out. It was heartbreaking to see him in so much misery while at the same time his incessant crying and frequent spit ups tested my delicate patience reserves. Somehow though—mostly—I held it together with the help of a loving and understanding husband and a few appropriately positioned F-bombs.

Calvin’s discomfort worsened when he began eating solid meals twice a day. On a couple of occasions we landed in the hospital where x-rays revealed a gut bound up by painful gas and stool. That’s when we started having to give him a suppository nearly every other day. This went on for eighteen straight months until we finally found a benign, over-the-counter medication that nearly eliminated his constipation.

Even so, there was a prolonged period of time when Calvin refused to open his mouth to eat unless we distracted him with the use of two toys: one, a plastic abacus with colorful alphabet blocks that spun noisily on a series of rods, the other a large, heavy plastic cube that lit up and played different musical instruments. Seated, using our left hand, we’d hold one of the toys up in the air shaking it to distract him while we spooned the puréed food, right-handed, into his open mouth. It was awkward, tiresome and pathetic. But he ate.

After over a year of these arduous, ridiculous but seemingly necessary antics we agreed we couldn’t continue. We took the advice of a pediatrician who told us to let Calvin, then almost two, participate more in his feedings by initiating finger foods. It was difficult finding foods that Calvin could hold, much less pick up and chew safely and well enough to be easily digested. Graham crackers, cheese puffs and cut grapes became some of his favorites. Unfortunately, the number one snack-food choice of mothers—Cheerios—were too small for Calvin to pick up because of his poor fine motor skills.

Calvin’s new found freedom and empowerment made all the difference in improving his appetite and interest in food—and, as one might expect, the cheese puffs probably didn’t hurt either.

To be continued

food for thought - part one

Before Michael and I knew we were having a son we referred to our unborn child simply as Peanut. Little did we know how apropos the nickname would become.

Six weeks premature, Calvin weighed only four pounds fifteen ounces. Though he seemed a mere peanut to us, he was a giant amongst the many micro-preemies nestled in clear plastic isolettes in the neonatal intensive care unit, some barely over a pound.

Calvin’s sucking reflex had not developed when he was born. He had to learn it. To further complicate things, his frenulum was short, meaning he was tongue tied, so including his high palette it was difficult for him to latch on. Several lactation consultants recommended some unusual methods to help us. I remember one telling me, when Calvin was just a week old, not to look at him while nursing because it would distract him. She can’t have been a mother herself, her advice bristling against every motherly bone, muscle and cell in my body, heart and mind which instinctively told me to gaze deeply into my son’s indigo eyes. Another tried to outfit me in some perforated plastic nipple shields—as if I were Madonna on tour—supposedly meant to help Calvin latch on. Being a natural skeptic of superfluous gadgets, it was no surprise to me when they failed miserably.

Poor Calvin tried so hard, his weak tiny little body tiring easily at a task so crucial yet so difficult and tedious. At every feeding the nurse first weighed Calvin naked on a sensitive gram scale. She’d pass him to me and I’d nurse him in bed until he fatigued then she’d weigh him again and calculate the grams of milk he had ingested, which was usually only a fraction of his total goal. The remainder of his calories were administered via nasogastric (ng) tube, a thin plastic cannula that was inserted—painfully—through Calvin’s tiny nostril into his stomach. My previously pumped and refrigerated breast milk, drawn up into a large inverted syringe, was delivered very slowly employing gravity.

Every few days the ng tube had to be carefully replaced. The first time a skilled nurse had accurately measured the length of the tube I had watched attentively. Several inches of tube were kept as a leader then she marked, with a Sharpie, where it would enter his nostril. The rest of the length measured from his nostril across his cheek to his ear then down the side of his neck to his abdomen. After measuring she threaded the tube through his nose until the black mark was at his nostril’s edge, ensuring proper placement in his stomach by listening through a stethoscope. Once, an inexperienced nurse performed the task and I saw that she had measured the length incorrectly. Calvin, beet red, sputtering and screaming while we restrained him during the procedure, continued to cry in pain because the long tube was pushing against the wall of his stomach. Anxious and nearly hysterical, tears and snot drizzling in thin strands off of my hot face, I hovered over my tiny baby helping—though hating—to restrain him. Through my sobs and Calvin’s shrieks I sharply told the woman that she had measured incorrectly and asked that the skilled nurse be called immediately to correct the problem.

It took Calvin seven weeks of this grueling protocol before he mastered the art of nursing. Only then were we released from the hospital, free to bring him home for the first time with the hope that he would continue to nurse well enough to thrive.

To be continued

photo by Michael Kolster

prince john

The other night my girlfriend and I watched the film The King’s Speech, sitting on a soft, misshapen couch at the front of a small theater. The film, beautifully rich in character, image and sound, took me, willingly, through many emotions.

One of the most poignant scenes, I found, was when the King recounted, to his compassionate speech therapist, some of the difficulties he had had as a very young child, so innocent and vulnerable to the abuse of others, and having contributed to his serious stammer. Bertie, as he was called, moved selflessly from his own maladies to thoughts of his older brother, Prince John, who had died at the tender age of thirteen having been hidden from public view because of his epilepsy.

At the time, in the early 1900s, there was no treatment for epilepsy and often the progressive disorder burned out of control and took the lives of its victims as it continues to do today. I went on to read more about Prince John from an entry in his mother’s diary after she had received a call from her son’s Nanny, Lalla Bill, from his sanctuary at Wood Farm:

“Lalla Bill telephoned from Wood Farm, Wolferton, that our poor darling Johnnie had died suddenly after one of his attacks. The news gave me a great shock, though for the little boy's restless soul, death came as a great release. I brought the news to George & we motored down to Wood Farm. Found poor Lalla very resigned but heartbroken. Little Johnnie looked very peaceful lying there . . . For him it is a great release as his malady was becoming worse as he grew older and he has thus been spared much suffering. I cannot say how grateful we feel to God for having taken him in such a peaceful way, he just slept quietly . . . no pain, no struggle, just peace for the poor little troubled spirit, which had been a great anxiety for us for many years ever since he was four.”

Through this entry I am reminded that epilepsy is a great equalizer. It does not discriminate, it can strike anyone at any time no matter how young, how old, how rich or how poor, and for many there is no escaping its doom.

Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It’s not hard. Just do it one story at a time.

Prince John photo by Hulton Getty

calvin and will

If Calvin could have a friend his name would be Will. Calvin and Will—kindred spirits and friends forever. They’d help each other—Calvin, hanging off of Will’s wheelchair handles to steady his balance and push while Will enjoyed the ride, spinning, turning and coasting down gentle hills.

Will would sweetly help Calvin push the big red button meaning “no” and the yellow button with its smiley face for “yes”.

The two, like peas in a pod, would giggle and smile simply because the other was giggling and smiling, and they’d hold hands.

Calvin would give Will his favorite toys, the orange plastic football or his plush blue velour star, its clear bubble center rattling with tiny colorful beads. Will would let Calvin wear his cool orange glasses.

They'd splash in the tub together, two tender bodies soaking up the warm water, buoyant and bouncing and frolicking in the waves.

At nap time they’d lay down their heads, sharing a pillow, covered by a soft, heavy blanket. They’d fall asleep in an embrace of love and friendship, their thumbs stuck in their sweet mouths, so peaceful in their slumber.

When one was feeling bad the other would stay nearby to comfort and console and to help wish the pain away.

And when Will would die, Calvin would miss him terribly, his only friend. But he’d remember him forever, his gentle spirit, his loving hugs, his wonderful smile. Will and Calvin. Calvin and Will.

William Tyler Day June 2004 - April 2009

team hoyt

One minute into this video begins an awe inspiring story of a man and his son who has cerebral palsy, Iron Man triathletes Dick and Rick Hoyt, both heroes.