hopes and regrets

Regrets:

Self-absorption. Stupid things I’ve said and done. Impatience. Dirty, crumby, dusty house. Not calling my mom enough. Worry. Beating myself up over past decisions. Too little exercise. Vanity. Gluttony during the holidays. Disorganization. Animosity. Poor correspondence with friends and family.

Hopes:

A seizure free life for Calvin with no more drugs. A few more good years with Rudy the dog. A mild winter and an early spring. Time to walk in the woods. Eat more vegetables. More out of town visitors. Growth. Enough food, warm homes, health and prosperity for the needy. Deepening friendships. Great success and happiness for my husband. Continued progress for Calvin. A fun and successful Cure Epilepsy benefit in February. To see my mother soon. A visit to New York City. Get into the pool. Make more time to read. Healthy minds and bodies. For my readers to continue to share Calvin's story with others.

From our home in Maine, Happy New Year to you all! May you leave your regrets far behind and realize your hopes and dreams.

Michael, Calvin, Christy and Rudy the dog

friday faves - to my peeps

If you are reading this I’d say you are quite probably a remarkable individual, at least to me. Since Calvin was born I have encountered, or re-encountered, some incredible people. You know who you are; you are doctors, nurses, therapists, authors, bus drivers, teachers, dietitians, one-on-ones, counselors, baristas, mothers and fathers, grandparents, nieces, nephews, cousins, third cousins and their kin, grocers, chefs, professors, EMTs, children, artists, musicians, students and former students, producers, new friends and old friends, shop owners, case managers, radio hosts, in-laws, phlebotomists, epilepsy advocates and founders, servers, deans, presidents, flight attendants, cooks, contractors, athletes, restauranteurs, siblings, mothers, fathers, caseworkers, ed-techs, contractors, recruiters, realtors, designers, managers, interns, security, dog owners, war heroes, department coordinators, pharmacists, technicians, alumni, entrepreneurs, directors, former teachers, actors, behaviorists, farmers, bartenders, coaches, caretakers, retirees, fishermen, clergy, swimmers, writers, gardeners, motorcyclists, lawyers, neighbors and former neighbors, salespeople, curators, quilters, kin, husband, movers and shakers.

You are all an integral part of my experience raising Calvin. Some of you I may never have met or sought out if it were not for him. Like Calvin, you have enriched my life beyond imagination. You have all helped shape me into the person that I am.

It is because of your love and support that I continue to survive my grief. It is due to your friendship that I haven't been beaten down. Your good humor, sharp minds, warm hearts and encouragement have kept me going even in the face of fear and darkness. But most significantly, the fact that you listen and are genuinely concerned is what energizes and inspires me to tell my story on behalf of Calvin.

So with this, I say thanks to my peeps. Keep on keepin' on sharing Calvin's story to help bring us one step closer to a cure for epilepsy.

A version of this post was originally published in November 2010.

Calvin with his one-on-one Mary

unchanged

My hours blend into days, the days into weeks, weeks into years, and though the time passes, little changes for our seven-year-old boy. It’s as if he were standing alone—if he could—in the center of a time-lapse landscape video, clouds streaking by like ghosts, days and nights flickering past in blinks of time as the sun and moon see-saw in the sky, as long shadows creep across the landscape before receding into the night. The seasons pass; autumn leaves die and fall to the ground, snow smothers everything then spring begins to emerge in a thickening of green and bloom. But amongst all this evolution our Calvin remains mostly unchanged, like a static pillar of rock in the center of the beautiful scene, time flitting busily by him as he stands fast, the world seemingly unaware of his presence if not for his shivering form.

But I am aware ... I know. My boy is changing. The top of his auburn head reaches about midway between my belly button and my solar plexis. His face thins out, his teeth grow in, his limbs lengthen into smooth slender straps of muscle and skin, not much fat save tiny morsels smaller than a mandarin orange slice just at the back of his knees. Sadly, Calvin’s physical changes underscore his lack of cognitive and developmental changes. He still cannot walk without assist. He cannot utter words. His expressive and receptive communication abilities are practically non-existent. He can reach for us if we are near, he can try for his sippy cup if it is next to him on a table, he can sit up and kneel in his bed and pound the safety panel to beckon us, he can kiss our faces if our heads are touching.

But Calvin still crawls around the house like a little baby—coos like one too—drools as much if not more than a teething infant. He plays with his toes on the changing table, he puts everything into his mouth, he’s still struggles against gravity in negotiating the stairs, but he’s been better at it before. And although we have seen progress I can count the times that the tulips have come up then withered—come up again then withered—yet Calvin is still doing the same things he’s done since he was two, with little to no improvement.

And I know deep down in my gut, where it's dark—sometimes heavy, sometimes hollow—that this virtual plateau in Calvin’s development, the one that keeps him at some twisted place between infant and toddler, is primarily—if not entirely—because of the seizures and the drugs.

But just as the Grand Canyon’s impressive erosion secretly continues on for millenniums, just as its river snakes and meanders, slowly carving its own story into the stony facade while the clouds gather and shower infinite rains that sculpt and smooth the plateau—the sun and moon rising and setting over its face—just as these changes are imperceptible to the naked eye, so remains Calvin; mostly unchanged.

But our boy is enduringly beautiful with a capacity for love bigger than the broadest canyon, the widest river, the deepest, black-green sea or the expanse of cloudless sky that holds forever in its infinite palm.

Please share Calvin's story. Help bring us one step closer to a cure for epilepsy. We can't do it alone.

photo by Michael Kolster

insidious

There’s nothing sadder than a sick child, save one whose health and well-being are already severely compromised by a chronic illness and the drugs used to treat it. To further complicate matters, the new drug we added to Calvin’s two-drug regimen—Keppra—can cause a greater incidence of infection, whether viral or bacterial, and since illness triggers seizures we are faced with a drug meant to stop Calvin’s seizures but that puts him at a higher risk for the illnesses that can trigger them; a vicious cycle to say the least.

Yesterday, Calvin traipsed around the house with his nurse in tow, like the little Energizer Bunny, even though his throat was red and sore, his nose dripped like a faucet, his voice was swollen and hoarse, and he coughed and sneezed and wheezed. His appetite has been waning again and his eyes hung at half-mast all day. But the drugs just wouldn't allow him to settle and I worried, with all that activity, that he’d make himself even sicker.

After a night of difficult breathing he woke up crying rubbing his head, either from his sore throat, a headache or both. Nevertheless, we had to cram five and a half seizure tablets down his throat plus half of a synthetic thyroid pill and half of a Tylenol, all on an empty stomach as tears rolled down his cheeks. “He’s so dutiful,” I told Michael with a sad frown on my face, “such a good boy,” I added, just as Calvin rolled over and fell back to sleep.

And later, when he seemed to be feeling better, I put him into his johnny-jump-up while I finished some important paperwork. Out of the corner of my eye I noticed he stalled and was staring at the ceiling. I hurried to his side to see the familiar patchy red cheeks and the tell-tale swallowing sound amidst an absence of breaths. “He’s having a partial seizure,” I exclaimed to Michael, as I proceeded to unbuckle and lift him out of his jumper. I laid him on his side on the couch hoping he didn’t roll into a tonic-clonic (grand mal) seizure like he has so many times before. Forty-five seconds had passed when he came out of it. These are the seizures most people wouldn’t catch, I thought, so faint and insidious, yet in clusters so menacing and harmful.

I was just saying to the nurse yesterday how Calvin usually has seizures at the onset of an illness, sometimes before symptoms appear, and that if he can avoid one this time it bodes well for the new drug. But in the back of my mind I’m always keenly aware that no matter what drugs—or combination of drugs—and dietary therapy we try, no matter how high we take him on his doses, he just keeps on having seizures.

Recently, after a bad seizure interrupted 47 days of seizure freedom we increased his Keppra and now, only twelve days later, he’s having seizures again. I wonder if I’ve slept through any of them, so stealthy, silent and macabre. I fear that I’ll miss one that will plant him face down into his pillow, comforter or mattress and that’ll be the end of him.

And so it goes that my sweet little boy continues to suffer these insidious seizures despite a mind clouded in chemicals and a body racked by their side effects, and with no cure in sight. There just isn’t anything sadder.

Please share Calvin's story. Help bring us one step closer to a cure for epilepsy. It won't hurt you one bit.

amanda's story

by Sandy Stocchero

The thing I remember most about Amanda’s epilepsy diagnosis is stepping outside the hospital doors one blue-skied summer day, looking up at the clouds, and saying “Thank you, God” for only being epilepsy. After all, people live long lives with that disease. Medication stops the seizures. She will be able to resume her normal life. People do not die from epilepsy…

Amanda’s seizures had not gotten too bad at that point. They were still only absence seizures—small, fast—and had not interfered with her life much yet. Some, but life was still fairly normal. I had spent half the night in Amanda’s hospital room for testing and half the night in the cafeteria with a mother who told me about her son’s battle with leukemia and his devastating prognosis. I felt lucky that day. I felt that it was just a blip on the radar screen of her life. After all, children are supposed to outgrow, adjust, and plow through. Children are supposed to be resilient.

Soon, I found myself saying over and over again to Amanda’s many neurologists, “People do not walk around in this state.” Absence seizures began in her ninth year of life, drop seizures and myoclonic jerks began somewhere between 11 and 12, and by 13 tonic clonics had completed the picture. At first she had 50 per day. By the age of 14, her brain had some kind of seizure every 30 to 60 seconds—all day, all night, holidays, weekends. Never a day went by that would give her a break. “If only for a day,” I used to say.

We tried every drug, every diet, every test, every website, every renowned hospital, and every top-ranking doctor. Nothing worked. Nothing helped longer than a month or so. Seizures are relentless—they invade and attack and you cannot stop them or negotiate with them. You cannot pay them to leave or press a button for their demise. You can only watch in horror and sleep with one eye open, constantly checking for that next breath you hope your child takes.

You do not get the luxury of being able to explain the epilepsy afflicting your child because even the neurologists have little explanation for what is happening. Instead you are left with little information and a plethora of loved ones who believe and try to quell your feelings of incompetence as you try every day to battle an unknown demon laying claim to your child.

Epilepsy robbed Amanda of her ability to walk, eat, dance, run, sing, be a cheerleader, play with her faithful companion Snoopy, keep up with her friends, or date a boy. Yet every day she awoke with a beautiful smile that lit up even a room filled with medical equipment and sadness. She never gave up hope that the seizures would release her one day, that she would go back to the life that was robbed from her and assume her place in it once again. She helped me believe it even on my darkest days.

Four weeks before her 16th birthday, Amanda told the student-nurse that I hired to help care for her that God told her he was going to stop her seizures for her birthday so she could dance. She was precise and matter of fact. Funny, the doctors do not tell you that your child could die. They do not even tell you that when your child is seizing over a thousand times a day with no end in sight. They simply say, “We do not know.” They did not know that the seizures would interfere with her brain’s ability to regulate her heart rate, oxygen levels, and body temperature. They did not know these things would happen or even if they could happen. They just knew that they had run out of things to try.

On July 19th, 2007 I pushed a curl off Amanda’s forehead, wiped a bead of sweat from her lips, and kissed them with all the love I had for the last time as she took her last breath in this world and passed into the next, the seizures finally leaving and letting her get that peace, “if only for a day.” My brown-eyed, brown-haired dancer, singer, comedian, and animal lover with a smile that lit up the room was buried on July 23rd, one day before her 16th birthday.

We need to work so that we may understand the brain as much as we do the heart and all of the other organs that make us the human beings we are. The brain is the final frontier that we can and will conquer. With your help, we can find a cure.

—Sandy Stocchero, Amanda's mom

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

resonance

How happy I am to be able to walk among the shrubs, the trees, the woods, the grass and the rocks! For the woods, the trees and the rocks give man the resonance he needs.

—Ludwig van Beethoven in his letter to Therese Malfatti, 1808

photo by Michael Kolster

beautiful day

On a beautiful day that I dream about
In a world I would love to see
Is a beautiful place where the sun comes out
And it shines in the sky for me
On this beautiful winter's morning
If my wish could come true somehow
Then the beautiful day that I dream about
Would be here and now

—Sung by Bob Cratchit’s Tiny Tim, in the musical "Scrooge"

Christmastime seems an odd time of year, so much emphasis on the material and yet as much on the giving as in the getting. It feels good to give, and I remember the sweet anticipation I had on Christmas mornings, as a kid, sprinting down our long hallway into the living room wondering what Santa had brought and hoping, at the very least, he’d left me candy and stuffed animals.

Calvin knows nothing of Christmas, of Santa, of why some people celebrate the birth of Jesus. He’s oblivious to the rush of the holidays, the traffic and long lines, the ridiculous reflexive press—as if it were stamped into our DNA—to turn out umpteen hundred greeting cards without stopping to sign much less include a personal message to some all-but-lost correspondences. In many ways I think Calvin’s lucky not to have to worry about such things, not to have to experience the painful disappointment in receiving the wrong gifts, not to have to go to school after winter break and ashamedly compare his modest holiday loot with his peers only to trudge home thoroughly dejected.

And—mostly—I feel lucky, too, for my circumstances don’t warrant getting caught up in too much of the rigmarole that consumes much of the holiday season. But I also feel sad.

I’d love to wake up Christmas morning to Calvin jumping in bed with us before scurrying downstairs to unwrap presents. I’d love to see him rip apart the colorful printed paper, peeling it down to its surprise center. I’d love to lavish him with peppermint candies and homemade eggnog. I’d love to teach him how to make an orange and clove pomander, cut snowflakes out of folded paper and tape them to the windows, decorate gingerbread cookies, build a snowman, watch him sled down a hill with his daddy and decorate a Yule tree with me. Instead, we buy few—if any—presents. Calvin doesn’t open them and we don’t make holiday crafts together—he can’t. We don’t much go out in the snow since walking in it would be nearly impossible for him. And we don’t decorate a tree anymore because—since Calvin was born—those ragged cardboard boxes, filled with glinting glass ornaments wrapped up in crumpled newspaper and tissue nestled in egg cartons, feel empty—soulless—and it's just no fun to decorate anymore, particularly because, in a perfect world, my sweet little boy would be helping me. Instead, I sit here wishing I could just kick those boxes off to the Island of Misfit Toys and get them out of my sight. But I keep them, and they're gathering dust in the basement, hoping—perhaps in vain—that one day things might be different.

Then something reminds me of Dickens’ sweet little golden-haired boy, Tiny Tim, perched on his father’s weary shoulder, an iron brace supporting his leg and a worn wooden crutch tucked under his arm. The image of Tiny Tim conjures feelings of joy and sorrow as twisted as the crippled boy’s frame. In front of a huge hearth he sings a song to his family with the face and voice of an angel—a song about what really makes him happy: here and now. Just like Calvin, I think. Just what Calvin has taught me to do: to love and cherish life and home and family, all things that can’t be purchased, boxed up, wrapped with ribbon or set under a gleaming tree.

And, in the back of my mind, is this lonely black and white image of that little wooden chair snuggled up to a huge fireplace, a wee crutch absent an owner, leaning coldly against its back. And I think to myself—hope to myself—that this beautiful day, this here and now, with my husband and our sweet boy Calvin, will last a good part of forever.

gift giving

We don’t much celebrate Christmas in our home, at least not the birth of the baby Jesus, however, we have been known to do a bit of seasonal gift giving. Michael and I have often made presents for each other—jams, candied nuts, photo books, cards, quilts, framed photos, poems, a wooden bench—but with each passing year we focus less on gifts for each other and more on simply cooking nice meals, listening to soothing music in front of a rolling fire while drinking plenty of champagne, bourbon eggnog and red wine. The holiday is lost on Calvin, who doesn’t distinguish one day from the rest, doesn’t care about a white Christmas, has no clue about Santa and reindeer and presents, and who wants for nothing but the essentials; food, drink, warmth, hugs and kisses, a nice long bath and to cruise around the house with his mom or dad in tow.

A few years ago Michael and I started a tradition of sponsoring a family in need as part of a giving program between the college and The Salvation Army. In lieu of giving to our own extended families we give to a local family who is in need of the bare essentials. We don’t know much about the recipients beyond their names, the town they live in and the size of their kids’ clothing. This year I enjoyed shopping for a thirteen year old boy and his parents. First, I picked out a cool, steel gray puffy winter coat, some sueded brown cargo pants, a couple of flannel shirts and a fleece scarf and glove set for the boy. After I lugged the bags out to the car, feeling a bit like Kris Kringle, I headed to Game Stop for a gift card and then picked up a portable CD player. From there I happily made my way to the local theater and purchased a gift card for the entire family to enjoy a night out at the movies, including popcorn. My last stop was the grocery store to buy yet another gift card so the family could purchase all the fixings for a nice big holiday meal.

On the drive home it started to snow lightly, the sky a grayish-white. As I sat at the stop light, its red glow repeated in the tiny droplets forming on the windshield, I tried to imagine the family. The parents don't share a last name—one sounds Italian, the other French. The boy has a different surname than either of them, and I wondered why. Perhaps he was adopted at a late age, I thought. I wondered what the family will be eating for their holiday meal, if they'll have dinner guests and, if so, who. Will they enjoy cooking or simply opt for a prepared meal or take-out? Is this family perpetually hungry? Is their house cold? Do they have a Yule tree, a nativity scene or a menorah? Do they have jobs? Are they happy? Healthy?

I glanced down at the printed giving form to ensure I hadn't forgotten anything. Typed at the bottom of the sheet displaying the child’s gift ideas I noticed a space for special requests. In neat, dark pencil or pen was written please pray For my family.

So when we sit down to our special meal tonight I’ll be thinking of our sponsor family—with a smile on my face—and giving them a silent toast for much peace, warmth and happiness for this holiday and beyond.

Christmas 2006

friday faves - christmas morning melancholy

One year ago on Christmas day:

It has happened on Christmas before. With as many seizures as Calvin has, it’s bound to. And though they are becoming more frequent again—more than once a week—and they seem to be getting longer, we have managed to avoid the hospital, at least for now.

As Calvin lay next to me, shuddering and shivering in his post-seizure state, I gaze, from inside my melancholy, out the bedroom window at the indigo predawn sky. A flickering star appears framed closely by large, almost black trunks and bushy, sagging pine branches. Outside, in the bitter cold of the morning Rudy barks wanting back in. I imagine his hot breath smoldering in the frosty air. Michael is warming milk and making coffee downstairs.

Somewhere nearby a woodpecker’s hollow knocking echoes in the stillness. A second bird replies from farther off. These are the only sounds I hear besides Calvin’s shallow breathing and the rustling of soft flannel sheets. The bird’s resonant tapping, so stark in the placid, biting dawn, doubles the sound of Calvin’s wrists striking his forehead.

Calvin turns and reaches for me. I lean into him as he wraps his arms around my neck and pulls me close, his soft hands caressing my back and the hair at my nape. I nuzzle him and kiss his plump cheeks as he holds me repeating “uh-uh, uh-uh.” He will fall asleep this way, just as the sun begins to shine warmly on the tops of the trees.

Please share Calvin's story. Help bring us one step closer to a cure for epilepsy.

This post was originally published in December 2010.

classic harriette

During a recent three-way conversation between my eighty-two year old mother who suffers from Alzheimer's disease, my sister Caron and me:

“Mom, you’re a good egg,” I say.

“Well, thank you,” she replies.

Caron chimes in something like, “and I’m a hard-boiled egg,” and I said, “no, you're a rotten egg, I'm totally fried, and Mom’s scrambled,” to which we all chuckle.

As Caron reassesses what kind of egg she is, Moms says:

“Gee, I’m gettin’ kinda hungry!”

We all burst out into laughter. Classic Harriette, I think to myself.

Dammit, though. I wish Calvin could know her and I wish she could know Calvin and remember him in her heart.

wonderful life

It gets me every time, Frank Capra’s It’s a Wonderful Life. Tears begin to fall at the sight of the first scene and trickle down my face in little bursts throughout the film until the end, even though I’ve seen it maybe a dozen times. George Bailey was one of the first roles I’d seen Jimmy Stewart play. I fell in love with his mild features, his unusual, round voice, his tall graceful physique. I fell in love with his full lips, strong jaw, those puppy dog eyes and the characters themselves that he’s played. I’ve long had recurring dreams of the actor as my good buddy. In one dream I was waving goodbye to him after we’d spent the day together. He sailed off in a big yellow school bus, his long suited arm reaching out the open window to bid me farewell. I was sad to see him go.

I’d say George Bailey is the quintessential American hero—a small town boy with big dreams who never realizes them because of his self-sacrificing altruistic nature. At least as much as the actor’s appeal of the mild mannered character he plays is the film’s poignant premise; that one life touches so many others in profound ways that we can never really know unless we step outside of ourselves and look in. George Bailey gets a rare, though painful, chance at doing just that.

Each character we meet in the quaint town of Bedford Falls is inextricably linked to another in a beautiful web of humanity: taxi driver and cop, bar tender and son, mother and restaurant owner, housekeeper and druggist, entrepreneur and war hero, high school buddy and brother, father and child. All would be lesser were it not for the other.

I think about this kind of connection between people, about how what I say or do might affect someone—a loved one, a friend, a stranger—and how my actions and words could alter some hidden trajectory, like that story of the man who went back in time and changed the course of history simply by stepping on a butterfly. If only—whenever possible—we decided to give instead of take, to smile instead of scowl, to act instead of lay idle, to melt instead of stand firm, to love instead of hate, to build up instead of break down, to embrace instead of resist, to share instead of hoard, I’d have to think that this world would be a better place, where we all might live a much more wonderful life.

volcano

I've been walking down these streets so long
I don't know where they're going to lead me anymore
But I think I must have seen a ghost
I don't know if it's my illusions that keep me alive

I don't know what I've seen
Was it all an illusion all a mirage gone bad
I'm tired of evil
And all that it feeds
But I don't know

I've been drifting on this wave so long
I don't know if it's already crashed on the shore
And I've been riding on this train so long
I can't tell if it's you or me who's driving us into the ground

I don't know if I'm sane
But there's a ghost in my heart
Who's trying to see in the dark
I'm tired of people who only want to be pleased
But I still want to please you

And I heard of that Japanese girl who jumped into the volcano
Was she trying to make it back
Back into the womb of the world

I've been drinking all these tears so long
All I've got left is the taste of salt in my mouth

I don't know where I've been
But I know where I'm going
To that volcano
I don't want to fall in through
Just want to warm my bones
On that fire a while 
 
 —Beck, from his album Modern Guilt

painting by Elin Pendleton

new friends

Lately, Calvin and I have been making some new friends. Yesterday, he had his second play date. I use the term play date even though Calvin doesn’t really play with the other kids—though perhaps he would if it weren't for the seizures and the drugs—just hangs out in their midst, which is nice enough. This time, Ellis, a girl in his first grade mainstream homeroom, came over with mom Kim and little brother Merrill. I barely know Kim, having just met her briefly in October, having shared margaritas with her and a friend last month and having visited over coffee one morning several days ago. But, to me, her friendship fits like an old shoe, all soft and warm and comfortable, the kind you could put on every day. We are alike in many ways, I think, and she wears her love and compassion on her sleeve, right under her long, loosely braided ponytail. She greeted me with a kiss and a jar of homemade spicy garlic wax peppers. I put on a pot of water for tea and gave the kids some crackers.

It was too nice outside to stay in. The weather was fairly mild, the ground mostly dry, so we donned our puffy coats and boots and headed out. Kim took the helm and stayed with Calvin while I traversed the yard searching for Rudy bombs. As the others explored a little, stepping gingerly, I scooped up five ample loads of Rudy Poop from the lawn. “That’s disgusting,” Ellis commented, surveying a huge pile of the brown stuff perched on the end of my shovel. “I know, really.” I said with a smile as I pitched the chunks into the shrubs. Ellis held Calvin’s hand, Kim the other, as we walked around the yard, Merrill buzzing between us while tossing a ball for Rudy. A biting wind came up and nipped at our cheeks and it got cold quick so we headed indoors.

Once inside I buckled Calvin into his jumper while the kids ate more Cheez-Its and peanuts. Merrill slipped Rudy some of his snack. “Don’t feed Rudy that stuff or he’s liable to get sick and you’ll have to come back and clean it up,” I joked. “That’s fair,” Merrill added in a very agreeable and amusingly adult tone, particularly for a four year old.

As Calvin was spinning, Merrill decided to give him some hugs. The two of them embraced like brothers, though to be honest I was a little afraid Calvin might passionately—though inadvertently—yank Merrill’s head off. It was cute to see the smiles on each of the boy’s faces. Everyone was happy and having a nice time.

“Calvin started a new medicine, right?” Ellis piped. “Yes, you know, don’t you, Ellis,” I replied, fondly patting her on the head. Kim emerged from the other room where Merrill had been cavorting. She held up one of Calvin’s empty foil drug blister packs that she must have found on the floor. “Please tell me this was empty,” she said smiling, though with a slightly worried voice. I confirmed, fully understanding her concern that Merrill might have scarfed some of the pills as if they were candy. “Yeah, and those are the ones that are like Valium,” I added woefully. That would not be good, I thought. “We keep those so Michael can take photos of the piles of Calvin’s empty medicine bottles and packets,” I explained.

After a nice long visit, Kim finished her tea, Ellis grabbed another handful of Cheez-Its and peanuts and slurped down her water. The kids both gave Calvin one last hug before leaving. “Will you guys come back and play again sometime?” I asked as I handed them a plastic baggy of crackers for the road. “Sure!” they chimed, and as they piled into their car I thought, how nice it is having new friends.

Please share Calvin's story. Help bring us one step closer to a cure for epilepsy. It's as easy as pie.

not just in the movies

Since Calvin was born, watching movies feels different. My senses have heightened and my nerves have splintered raw. I can still take most any genre—horror, suspense, drama—but now, it’s the occasional image I feel the urge to sensor with both hands over my eyes.

Shortly after we brought Calvin home from the hospital, when he was nearly two months old, we rented the film The Magdalene Sisters. A drama based on fact, it portrays the enduring hardship of three Irish girls having entered—against their will—an asylum for wayward teens and promiscuous girls known as the Magdelene Laundries. Some girls had been impregnated by their own fathers, others were deemed too flirtatious or too beautiful to be out in society. They were sent to the abusive institutions, which were run by the Catholic and Protestant Churches during the 19th and into the 20th century.

In one of the first scenes a teenage mother bears a child out of wedlock. The infant is snatched away by her parents and given up for adoption. Childless and grieving, the new mother is immediately cast into the asylum where she is forced to do hard labor in its institutional laundry. On her first night there, robbed of the child meant to nurse at her bosom, she suffers the excruciating pain of engorgement and the indescribable despair of knowing she’d never hold her child.

My heart hung heavy as I watched. I ached for the girl, knowing her physical pain—I’d felt it myself—grieving her loss, her despair. The scene reduced me to silent tears, its watery images skating across my vision like sharp sheets of ice, for I knew it’s truths, and I knew of other such atrocities in the world that were ongoing just as I sat comfortably watching the film.

When Calvin was born he came unexpectedly early—six weeks premature. Because of his neurological problems we had planned to deliver him during a scheduled cesarean in Boston. There were to be a number of specialists at our side: pediatric neurologists, a neurosurgeon, neonatologists and donor platelets in case of a suspected brain bleed. But Calvin surprised us all when he decided to come on his own and therefore had to be delivered by emergency cesarean in Portland. Some of my platelets were hurriedly extracted in case he needed them. The result was a platelet count so low that, if given an epidural, I’d risk a spinal bleed. So they put me under a mask, pumped anesthesia into my veins and cut Calvin out. I didn’t see my wee boy until he was twenty-one hours old. Even so, he was just beyond my reach inside a clear plastic capsule under bright lights in a room filled with alarming buzzes and bells, busy nurses and masked doctors tending to several other preemies each boxed in their own isolettes. It felt like days before I was able to hold my precious newborn, albeit, for mere minutes at a time. My body literally ached for Calvin, day and night.

Often it’s a movie like The Magdelene Sisters that moves me to tears and provokes such thought. But sometimes it’s a news story describing the victims of an earthquake or tsunami or genocide or human trafficking, that causes me to deeply reflect on the suffering others endure. I remember walking the streets of Addis Ababa, Ethiopia with my brother Matt on a layover from Egypt going home. We saw countless, hungry poor slumped on hot sidewalks wearing rags with their crippled, malnourished, disease-ridden children propped at their sides, a few coins at their feet. Flies encrusted their watery eyes as they held out slender hands. I gave what I had in my pockets knowing it wasn't enough.

Encountering these hungry people reminded me of the first time I’d seen a homeless person lying motionless on the streets of Seattle as passersby nonchalantly stepped over him to get where they were going. I’d touched my companion’s arm to stop and ensure that the man was okay—alive—and was ushered to continue on. I worried for him and was shocked by the apathy.

Since then I’ve tried hard to put myself in others shoes, tried to walk just one puny mile in them—and yet—can never fathom the marathon of their suffering. I try to make a difference in some small ways—do what I can—but it's never enough. And then I crawl into my bed at night and dream of my little boy, asleep in the room next to me, warm and dry and fed, a scene that—tragically—to some would seem real only in the movies.

photo by Paolo Roversi

note to the neurologist

december 16, 2011

dear dr. thiele,

calvin went 47 days without an observed seizure and then had a tonic-clonic in the bath the other night. it was identical to his previous one (also in the tub) in that it was two and a half to three minutes long, as usual, but was far less convulsive compared to the seizures he used to have before starting keppra. but it was scary—relatively silent with significant cyanosis.

in light of going 23 days after having started keppra (he had been having weekly seizures prior to that) then increasing his keppra dose to its current 500 mg b.i.d. and going 47 days, i am wondering if it makes sense to increase his keppra dose again to see if we can nip them in the bud once and for all.

my concern is that calvin has a long history of continuing to increase and/or add on drugs to his regimen without ever gaining complete seizure freedom. thus, he ends up pretty drugged up while still having seizures. i am wondering, at about 39 pounds, what increasing his keppra dose might achieve. please advise.

calvin's appetite continues to be spotty, although we may have stabilized his weight a bit. i wonder, if we do increase calvin's keppra, might we also be able to decrease his banzel?

side effects we've seen while on his three AEDs:

clobazam = significant drooling, insomnia, hyperactivity, dizziness, good control of seizure clusters (current dose 15 mg b.i.d.)
banzel = cognitive brightness, better muscle tone and strength, hyperactivity, possible headache, no measurable seizure control beyond initial doses of 200 to 300 mg b.i.d. (current dose 400 mg/600 mg)
keppra = good seizure control, asthenia, some somnolence, loss of muscle tone, gait disturbances, dizziness, less hyper, possible headache, insomnia, significant lack of appetite (never saw this with highest dose of banzel) 5% weight loss (current dose 500 mg b.i.d.)

thank you so much for your valued input.

xo,
christy

photo by Michael Kolster

friday faves - jesus mary joseph

I'm not really a religious person, but since Calvin was born I find myself using a lot of names from the pages of the Good Book.

I mean no disrespect to the devout; I simply wish to underscore, as I look both introspectively and retrospectively, how vital it has been for me to release a certain amount of pressure from my cooker from time to time. So, on occasion when vexed, exasperated or irked, or even excited, I have been known to shout—and I don't think I am alone here—the names of whom believers call The Father and The Son and including The Son's parents.

This characteristic of quoting names from the Bible must be genetic as I clearly remember my mother, when she was very frustrated, shouting, "Jehoshaphat!"

My favorite expletive, though—and the one I seem to opt for most frequently—may not exist in the gilt, leather-bound pages of Scripture. This profanity happens to be the oft-despised, yet renown, F-bomb. There's nothing quite like the word for it can be used with such nuance so as to suit seemingly limitless application! I must not fail to mention how mellifluous it sounds—though my adored mother-in-law would beg to differ—whether whispered or mumbled, drawn out, sharply punctuated, screamed excitedly or very plainly stated.

And though I try as I might to refrain from dropping this bomb excessively, whether due to enthusiasm or exasperation, it is my preferred mode of expression over kicking cabinet doors or throwing a shoe. In any case, and lucky for me, if my beloveds are around they usually just laugh.

This post was originally published in November 2010.

no silver bullet

The honeymoon is over. It happened in the bath ... again. Michael called to me from the top of the stairs and I sprinted up as he was awkwardly lifting Calvin out of the tub. Our little boy was pale, dripping and rigid, looked like one of those hard plastic dolls with the stiff limbs, thick unruly hair and glassy eyes that open and close but only stare vacantly dead. He was still grasping the orange and blue plastic football in his trembling claw. We laid him on the bed, covered him with a towel and waited it out. His bloodless face appeared the color of a stormy sky, like a river stone with little beads of dew trickling down its surface. This seizure, like the last, was sickeningly silent, the type I’d easily sleep through and possibly wake up to later in horror.

When it was over I rushed downstairs to prepare Calvin’s nighttime seizure meds. By the time I returned Michael had gotten him into his pajamas. He was whining and already fighting sleep. It wasn’t easy to get him to open his mouth for the six and a half pills—much less get him to swallow them—but having done so countless times before, we prevailed against his drowsy thrashing. Just as Michael was laying him down he fell fast asleep. We latched the bed’s side panel, drew over the safety netting and secured all four points. As I looked down through the cotton hammock’s hexagonal pattern to my sleeping babe it was as if I were peering through a fence. My boy is trapped, I thought, fenced in by a vicious cycle of silent seizures and more drugs, drugs and more seizures. Maybe, like Michael says, there really is no silver bullet.

As I padded my way downstairs, I wondered if one day I’d be stepping down them childless, into a hollow shell of a kitchen—a living room—where my child didn’t live anymore. Will we be living in a home void of the pitter-patter of little feet, void of Calvin’s happy giggles, of the excited splish-splash in the tub every night? What is this gnawing feeling inside me I’ve always had that Calvin’s time here on earth will be short? I sat on the toilet in the dark crying, grieving our unraveled string of forty-seven seizure free days, and gazed blearily into the tidy mudroom we had built last spring with the cheerful inside window, the warm kitchen light streaming through its panes. Somehow, seeing it made me feel better—the strong wooden bench with its little cubbies holding our duffels and shoes and hats and scarves and gloves, all in their right place looking like some rustic photo shoot for Maine Magazine. This home of ours with its chipped paint trim, creaky floors, dust-bunnies, drool stained windows and grubby little fingerprints everywhere, soothes me.

This morning it is raining. I’m looking through a window dotted with shiny droplets, out to the knotted tangle of mossy branches, which is our front yard tree. Last winter, I think it was, a big hunk of it broke off in a storm, leaving a gaping hole in its crown. I wonder if parts of Calvin’s brain suffer the same demise in the repeated electrical storms that rage inside his head. And so, I take every chance I get to kiss that sweet little head, his so-soft chubby doll-faced cheeks, his little bird neck, his eyelids, his ears, his button nose, his thick shining hair. I kiss him as if there is no tomorrow, because, without that silver bullet, I’m never sure that there will be.

Please share Calvin's story. Help bring us one step closer to that silver bullet—a cure.

photo by Michael Kolster

dangerous place

The world is a dangerous place, not because of evil people, but because of the people who don't do anything about it.

—Albert Einstein

photo by Michael Kolster

past the breakers

Summers in the Seattle suburb where I grew up were gloriously warm and dry, contrary to what some might tell you. I’d cast a towel over the brittle yellowed grass in my back yard, slather myself in oil and set my transistor radio close to my head. But when my family took trips to the coast, about three hours from our home, I’d leave the oil behind and bring an empty medicine bottle full of dimes for the showers, knowing how sandy I’d be getting.

On these trips my dad woke us early to go digging for razor clams. My brother Matt crawled out of his mummy bag and jumped down—like the monkey that he was—from the little shallow loft at the end of our trailer. I’d follow eagerly, shaking off the night’s claustrophobia having been hemmed in by my brother with only a few inches of headroom and a tiny window that barely opened. We donned cutoffs, sweatshirts, canvas sneakers and an occasional poncho, toted buckets and dragged our shovels carving swerving ruts into the beach. We trudged after my dad’s tall, thin figure—stepping into his wide footprints—and waded out to the sandbar, a long slice of beige a billion grains strong molded into wavy ripples like sub-Saharan dunes. In the frigid water our feet went numb and sand chafed our skinny ankles raw. Our hard-heeled strides sent the clams asunder, one short squirt from their bivalves giving them away. Then we’d dig.

In the afternoons some of us flew kites and jumped off grassy bluffs into the dunes, others collected sand dollars and squashed bronze kelp heads. One time my brothers and sister flew a kite 1,500 feet into the sky, its heavy line sagging in a deep crescent, the kite a mere dot floating in the blue expanse. We listened to it hum in the wind, holding the whining string up to our ears. I was excited, but afraid to take hold of the kite for fear it would carry me away.

All excellent swimmers, we dared to stroke out past the magnificent, stormy breakers, then we'd body surf into shore and bury each other in the damp sand. The first time my brothers buried me I remember being surprised at the weight of it, of the pressure on my chest and the way I could barely move my hidden limbs under its mass.

I had long dreamed of reliving some of these fond childhood moments with my own husband and child. In a blink, however, that all changed when Calvin was born with significant neurological problems, and more so when he started having seizures. And though my life is rich and wonderful, full of love and happiness, we’ve had to do everything very differently than we had hoped, had to relearn how to live our lives in the face of the grief, loss and hardship of a having a disabled, afflicted child, like someone who must relearn how to speak after suffering a stroke, how to trust after being jilted by a lover, or how to walk after loosing a limb.

Two summers after my dad died I made a dear friend while living in San Francisco. We spent nearly every weekend together that summer, and into the fall, taking photos for his book on the environmental history of the Bay Area. He shared with me all sorts of stories about his native home, showed me hidden waterfalls and ponds with rope swings and wildflowers on mountainsides. On one of our hikes he told me about a day at the beach when he was just four. His father, who must have been a young man then, had ventured to carve a tunnel through the sand, not unlike the igloo my brother Matt and I dug out of a gigantic snowball once. He was watching his father burrow his way through to the other side of a moist sandy hill when it collapsed. His father was entombed, no way to get to him, and he died.

My friend’s life—his mother’s life—would never be the same again, like some train that’s been derailed, cars careening to one side, perhaps skidding off the edge of a trestle spanning a deep gorge, or slamming head on into the side of a mountain. It’s hard to say how a person perseveres through such adversity, except that we, as humans, are adept at relearning, at exploring uncharted territory, at daring to navigating foreign waters and at swimming strong out past the breakers where the waves are smooth and rolling and one can clearly see the horizon again.

photo by Michael Kolster

wouldn't it be great?

Wouldn’t it be great if our boy could walk all by himself so he could roam free and far and wide?

Wouldn’t it be great if our boy could tell us his hopes and dreams, tell us when something is hurting, tell us when he is hungry?

Wouldn’t it be great if our sweet son could read a book, see a bird, chase a butterfly?

Wouldn’t it be great if he could feed himself and dress himself? He’d be so proud.

Wouldn’t it be great if our boy could sleep through the night and wake without a headache?

Wouldn’t it be great if he could learn how to swim, play with other children, and draw pictures to give to his friends?

Wouldn’t it be great if Calvin's seizures stopped forever?

Wouldn’t it be great if our precious son never had to take another disgusting drug again?

Wouldn’t it be great if our child was a healthy boy, could grow up strong, one day live by himself and explore the beautiful world all on his own?

Wouldn’t it just be so great?

daytime shadows

This low light of winter can turn a gray mood into black. The wind is sharp and bitter cold, cuts through to my skin, chaps my hands. Everything bears a pathetic hard-edged shadow that is both blindingly bright and dismal at the same time. This sun, which comes at me nearly horizontal in the sky, takes me down. I want to look away. It casts its long, suffering shadows that I know will take months to retreat. The ground is solid and unforgiving now, icy morning crystals frosting blades of grass soon to be obscenely covered in white.

I learned this morning that my new friend’s (she’s really the dear friend of a friend and someone I’ve never met before) twenty-one month old son, who is dying from Tay-Sachs disease, has started having seizures. When I read her words I felt a sharp jab in my heart, the familiar saline sting in my eyes. I know seizures, I thought, I hate them. I’m not sure when little Ronan’s seizures began, nor what they are like, nor how long they last. But perhaps, as sick as it sounds, all that is immaterial—doesn’t matter—because with Tay-Sachs, from what I know of it, seizures are simply the inevitable.

And then, shutting my eyes, I to try to conjure up the image of my friend holding her son through his seizures, like I’ve done with Calvin countless times, while at the same time shutting my eyes to try and blot out the image of my friend holding her son through his seizures.

I wish it were all just a terrible dream—these seizures—this grief, this gradual loss some of us experience with our children, albeit it in vastly different ways from each other. This daytime nightmare that follows us into sleep, with its hot merciless brilliance hurling us into darkness, is difficult, if not impossible, to escape. And so we sit with it. We must let it all become a part of us like smoke seeping into our lungs, radiation into our pores, cancer into our marrow, and we learn—somehow—to live with it. Because what else can we do but to die?

photo by Michael Kolster

change on a dime

Some things can change on a dime: traffic lights, the stock market, the look on someone’s face, the weather in Maine, my mood.

Today is Calvin’s forty-third day without a seizure (assuming I didn’t sleep through any.) The last time he went this long between seizures was four and a half years ago. But then, without warning, on day forty-four Calvin had eight complex partial seizures and we had to give him emergency Valium—twice—to stop the cluster from rolling into status epilepticus, a dangerous, sometimes lethal, prolonged seizure. We were left temporarily increasing one of Calvin’s three seizure meds and permanently increasing another. After that he had as few as four and as many as twenty-three seizures every month over the course of the following three years. In an effort to snuff out the seizures we constantly increased his doses, albeit unsuccessfully—until we were finally forced to completely change his anticonvulsant medication regimen. This change, which began with the initiation of one new drug, and the gradual elimination of the three older ones, reduced his seizures to a few every month. But over time, the number of his seizures began to increase, so that we had to add a second drug—then a third—to his already powerful drug cocktail.

So, although it might seem reasonable—because of this forty-three day stint—to assume that we can breathe a sigh of relief, relax our shoulders a bit and put our fears on the back burner, we cannot. For over five and a half years the seizures have eventually found a way around the drugs, burst through the barrier, like a crack in a dam, flooding Calvin’s brain with electricity gone haywire.

So, when I hear the cell phone ring while Calvin is at school, I still flinch. When I see him slumped in his jumper I run to his side. When I hear him shriek in the tub my heart leaps out of my chest. When he laughs hysterically I feel that sickeningly familiar suspicion that a seizure is on its way.

A friend I grew up with has a nine or ten year old daughter, Olivia, who has epilepsy, and had uncontrolled seizures for years. This past summer Olivia began the Ketogenic diet, a rigorous, exacting high-fat diet aimed at curbing—or stopping—seizures. Calvin tried it for two years without success. Olivia was on it for just a few days before her seizures completely stopped. Since June, Olivia had been seizure free and had begun reducing her anticonvulsant medications, even discontinuing them for a few days. Shortly thereafter, she had thirty atonic “drop” seizures in one day. Atonic seizures, though brief, are dangerous, even life threatening, as the seizure causes the total loss of muscle control and the victim abruptly drops to the ground, often breaking their nose or teeth or causing serious head injuries that can prove to be fatal. Olivia had to reinstate her drug regimen.

So, like I tell people when I meet them, epilepsy is not a benign disorder where you take a pill and everything is okay. It’s not. Like the weather in Maine, it can change on a dime.

Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It’s as easy as pushing a button.

One of Calvin's electroencephalograms - photo by Michael Kolster

friday faves - intubation

Just after Calvin turned two we were on a plane returning from a visit with Michael’s parents. Mid-air, Calvin became pale, as if in shock, then he vomited and fell asleep. We figured he was just airsick.

At home later, and just after I had fed him dinner, all color drained from Calvin's face. He slumped in his chair and, with a sour look, started gnashing his teeth and vomited again. I had seen this suspicious behavior a few times in previous months and although it seemed perhaps he was ill, or might have eaten something that didn't agree with him, my gut told me differently.

The next day the suspicious behavior continued until it finally culminated into an unmistakable seizure. We immediately dialed 911 and the medics arrived at our house in minutes. I don't remember how long his seizure lasted, but I do remember being very frightened and concerned. In the emergency room I spoke with his pediatrician on the phone. She decided it was best to keep him overnight for observation. Our local hospital did not have a pediatric intensive care unit (PICU) so, after Calvin stabilized, they wheeled him upstairs to the ICU.

Calvin was tiny, even for a two year old, and the ICU nurse couldn’t find a pediatric oxygen mask for his room. Her solution was to punch a hole in the bottom of a Styrofoam coffee cup, insert the oxygen tube through the hole and place it in the steel-barred crib near Calvin’s head in case he needed it. I was dumbfounded at her remedy, but what was I to do? His pediatrician arrived and began examining him when he started to seize again. With her stethoscope to his back she said soberly "he's not breathing." I panicked. She yanked the oxygen tube out of the coffee cup, held it under Calvin's nose and sternly ordered the nurse to find a pediatric mask. Everything blurred and morphed into slow motion. An eternity later a mask was located. Calvin’s doctor placed it firmly over his mouth and nose and she began to squeeze the red, pleated bag inflating his lungs.

The intensivist who had been called determined that Calvin needed to be intubated immediately—no time to wait for an anesthesiologist. A wall of white-coated figures encircled our tiny son as they placed him, wearing only his diaper, on a gurney. The intensivist began the procedure, feeding the clear plastic tube through Calvin’s mouth and pushing it into his trachea. Calvin began to scream—he was breathing. I was in shock and too ignorant to question the decision to intubate and, at the time, I had little choice but to believe that they knew what they were doing. Distressed and trembling—my child's muffled cries gruesomely echoing through my body—I wanted to run to him, but Calvin was fenced in. A nurse asked softly if I wanted to leave. Leave my child? I thought. And though Calvin was still breathing they continued their torturous mission. The doc tried several times to cram the tube down Calvin’s throat, but to no avail. Eventually he determined that the tube was too big. With my hot face buried in Michael’s chest, I turned to see the doc pulling out a bloodied tube as my baby arched and screamed and sputtered.

To our horror, a second, smaller, tube was then initiated. Again Calvin shrieked in agony and tried to escape their restraint. In my terrified daze, my boy's stifled shrieks eerily commingled with the strange voices and sounds in the ICU. Lights and shapes shifted and blurred in my flooded, swollen eyes. Michael stood with stoicism—his tight embrace shielding me from our horror—but his eyes, too, were red and moist.

Finally, the intensivist threaded Calvin's trachea. We rushed to his side as each white overcoat splintered off. Our baby boy was crying, hurt and confused, and I held him. I held him and I did not let go.

Epilepsy is a progressive disorder, and if uncontrolled by medication, seizures can morph and change and increase at a moment's notice. So although it has been several years since Calvin was hospitalized for bad seizures, the image—the fear—is forever etched into my mind as fresh as if it were yesterday, because I know we can be right back there at any moment. As it is, we live a life at home, away from the days of emergency rooms, but not free from the ills of anticonvulsant drug side effects, and I fear it is a life sentence for Calvin. I know it is until we find a cure.

Please share Calvin's story. Help bring us one step closer to a cure for epilepsy. It won't hurt you one bit.

A version of this post was initially published in December 2010.

photo by Michael Kolster

perception

In his college photography classes, my husband Michael often talks about perception, about the way our experiences shape our view of the world and how it is difficult—perhaps impossible—to regard a circumstance, or a thing, without bias seeping in from our past.

Perception is strange, I mean in the way one thing reminds us of another at any given moment. Perhaps, while strolling up a brick sidewalk, the back of a man’s head might make us think of our brother. At times, from afar, I’ll spot a tall skinny bald guy with a daddy-long-leg stride who, until I get closer, I could swear was a reincarnation of my dad. Or, on winter days, when mist hangs low over the road and neighbors are stoking their fireplaces, heavy smoke trailing into my nostrils, I am transported to a street corner vendor roasting chestnuts in downtown Manhattan. Sometimes a particular bend in a road, or the narrow arching of its mossy trees, will take me back to a winding stretch along the Bolinas Ridge just north of San Francisco, and then—as abruptly—I am jolted by the passing of a gold and green wedge of salt marsh that brings me back to Maine.

There’s a public house in the heart of our town that Michael and I like to frequent when we’ve got someone to watch Calvin—the joint with the awesome cheesy fries. We went there when it first opened and met a nice fellow behind the bar named Shane. To me, Shane is the perfect blend of my high school best friend, John, and one of my favorite actors, John Turturro. His mannerisms are uncannily like my friend’s—as if a clone—the approving nod of his head, the “yep” of his accompanying reply, his posture, even his voice and the way he leans on the counter. All these things, happily, remind me of John.

At ten, when I jumped out of a swing I broke my wrist. My oldest brother took me to the hospital where they fitted me with a cast. After that, people with plaster cast appendages seemed to come out of the woodwork, not unlike when I was pregnant with Calvin and, suddenly, I saw ripe, gravid women everywhere. Now, raising a child with cerebral palsy, pervasive developmental disorder and intractable epilepsy, I have special radar that can spot children like Calvin at a hundred yards. I usually elbow Michael and say, “do you see that kid?” and we both smile, as if members of some secret order.

Usually, these reminders and impressions sink warmly—satisfyingly—into my bones. They bring me back to a place of contentment, like feeling the weight of a favorite blanket, my feet tucked beneath me with a hot mug of coffee in my palm, or the taste of red wine shared with an old friend, or the familiar air of my childhood kitchen, Dad leaning over a big bubbling pot of his chunky, homemade cinnamon applesauce.

One perception—reminder—that I would gladly lose is the way the shadowed lattice of winter branches, or lightening bolts shattering black storms, or the crooked fractures in an icy puddle, or even a web of holiday lights strung on a tree—especially the blinking ones—remind me of Calvin’s seizures, of the spontaneous, uncontrollable electrical currents that ravage his neuropathways, that singe the tiny capillaries in his little brain until they're dry and brittle as a twig—or worse—dead.

But I suppose these reminders serve some purpose, shaping me, informing me, keeping me on a steady course of tireless advocacy in search of a cure for that which afflicts Calvin so horribly—epilepsy—for which I hold a deep and bitter prejudice against, and always will, based on my perceptions as Calvin’s loving mother. But luckily, because all things in life inspire me, I can still find these images in nature beautiful, when I can find a way to forget the seizures, if even for a moment.

darkness and silence

Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.

—Helen Keller 

photo by Michael Kolster

déjà vu

Since last Monday—in a week’s time—we’ve taken Calvin to Boston to see the neurologist and dietitian, to draw seven vials of his blood and collect his urine. Then we took Calvin to his pediatrician to ensure that his ear infection had cleared up. Next he went to the hospital for a sonogram on his kidneys because of dubious lab reports, and yesterday Calvin faced a double-whammy having more blood drawn and an X-ray of his abdomen. We are headed to the nephrologist on Thursday.

We’re living a dreadful déjà vu of the early years when nearly every week we’d bring Calvin to see one specialist or another, often several. At one point in time, in the space of eighteen months, we’d seen the neurologist, the endocrinologist, the nephrologist, the geneticist, the gastroenterologist, the developmental pediatrician, the dietician, the urologist, the pulmanologist, the sleep specialist, the neuro-ophthalmologist and, of course, on several occasions, our beloved pediatrician. Add to this list diagnostic testing including 24 – 72 hour electroencephalograms, blood draws, nuclear medicine CAT scans, sonograms, MRIs, X-rays, one sleep study, and one eye surgery. And we can’t forget the trail of physical therapists, occupational therapists, the speech and language pathologists and teachers of the visually impaired who came into our home weekly. We had ourselves a bona fide cornucopia of experts trying to help us figure out what the hell was wrong with our kid, and what to do about it.

Usually, the specialists’ solutions were (and still are) to try medicine, though we’ve tried dietary therapies too. Not including the shopping list of drugs he was given as a preemie in the NICU, Calvin has been on Nystatin and Lactulose and Reglan and Erythromycin and Zantac and Miralax and Potassium Citrate and Carnitor and Neurontin and Melatonin. He’s had Diazepam and Atavan and Phosphenytoin and Amoxicillin and Cefprozil and Augmentin and Dilantin and Trileptal and Keppra (twice now) and Depakote and Clonazepam and Zonegran and Lamictal and Clobazam and Rufinamide. And he’s only seven years old.

I’m hoping that what the doc finds on the sonogram and X-ray is benign, that the blood work comes back normal this time and that we can take Calvin off of two more drugs that he’s been on since starting—and ending—the rigorous, high-fat Ketogenic diet that didn’t work to curb his seizures.

The daily intake of drugs is a reality for anyone who has epilepsy assuming they are not candidates for neurosurgery or the vagus nerve stimulator, like Calvin, and even then sometimes drugs are still necessary. Most people afflicted with epilepsy spend a lifetime on drugs, and while some enjoy seizure freedom it doesn’t come without the familiar, daily and long term consequence of drug side effects, most definitely the kind of déjà vu nobody would want.

Please share Calvin’s story with others. Help bring us one step closer to a cure for epilepsy. It won’t hurt you one bit.

photo by Michael Kolster

that's just life

I’ve often wondered which of our personality traits are passed down through DNA, and which are crafted purely through our environment, our life.

My father, though often fun-loving, was a strict guy, and raising six kids, though we were mostly well-behaved, tried his patience to a great degree. In the early years, though rarely, when he punished my brothers he’d take off his belt, fold it in half and tell them, “bend down and grab your ankles,” then he’d give them a good whack, though memory tells me not too hard and no more than once. He didn’t employ the belt on me and I don’t think he used it on my older sister, though I can’t be sure, never did ask her.

When I was in my teens I regretfully had a nervous habit of picking at my acne, like some do biting their fingernails right down to the quick. I’d watched my mom and a few of my siblings do it, leaning in close to the mirror studying their faces like a map. Perhaps that’s how I learned. Or maybe the trait had simply been branded into my genes from former generations dating back to the Irish Potato Famine or the Spanish Inquisition. Who knows? In any case, it bothered my dad something awful, didn't want his daughter to have a scarred face, and he’d often ask me if I’d been at it, when it was painfully clear that I had. He’d slap my hands and tell me not to do it. Once, in front of my best friend, he asked me if I’d been picking. I was so ashamed, my head hung low like some cowering dog, and without my answer he slapped my face, not hard, but it stung.

There were times when I’d used a swear word or talked back to my mom. Once she chased me around the living room furniture, like some Laurel and Hardy episode, wielding a wooden spoon, finally lurching and smacking me on the bare thigh just below my cut-offs. I developed a good welt, kind of wished it had remained there like some battle scar or tattoo that I could boast about later. I still have that wooden spoon, use it to mix cookie dough like she did, feel some sort of bond with it, that poor spoon which had no aim to cause me harm. Now, I can laugh about the farcical scene.

On a couple of occasions my mom ground a bar of soap into my teeth, rubbed it hard across them a few good times to wash out my dirty mouth. Limey flakes of it caked my molars, took forever to brush away, and bitterly foamed when I tried. But I guess the tactic didn't work because I still have a dirty mouth.

At times, weekends caring for my son Calvin are long, while Michael attends to chores around the house, in the yard, works at his studio and cooks our meals. By Monday morning I am spent, my patience reserves practically on empty. Calvin often works my last nerve, though not purposefully, just by his usual manner. He hasn’t been eating lately, I'm having trouble getting him to take his seizure medicine, he's drooling like crazy, grinding his teeth, ripping off his glasses and chewing on them, dropping everything on the floor and finally, in the mere seconds when I turn my back, gouging tracks into his wooden tray with his teeth, carving splinters off that he swallows. I’ve told him not to do these things about a billion times over the course of years, yet he persists. When I'm sleep deprived, which is usually, it takes all the strength I can muster not to swat him, and at times—though rarely—I scream so hysterically that Rudy the dog cowers upstairs and my voice becomes hoarse for the rest of the day. I wonder if the neighbors emerge from their doors at the racket. It wouldn't surprise me.

How weak and puny am I to let such insignificant, relatively harmless incidents eat away at me like that? I think. It doesn't happen often, but it happens nonetheless, and I cringe at my pathetic ugliness. The poor little kid can’t help it, it seems, has so much going against him without me having to get cross. If I'm lucky I can take a deep breath and shake it off like those yoga gurus tell you to do, or simply let Calvin put his arms around me in a pure, loving embrace and my angst melts away like butter in a warm pan.

I remember once telling my friend Uli how bad I felt for screaming at the world in Calvin's presence. “That's just life,” she said, “you can't save him from experiencing life.” She gave me a big warm hug as tears ran down my face. She helped me to feel normal, let me realize that maybe I'm not alone out there, that perhaps there are other moms and dads who feel just the same, and falter. After all, we're only human ... and that's just life.

what i want

I want to be strong, though often I falter,

to feel glee when I drown in despair.

I want to be sane, though at times I’m unhinged,

to be kind but my cruelty seeps through.

I want to be understood, just as words escape me,

to endure as my running legs collapse.

I want to be patient, not ugly and cross,

to hope when I find myself doubting.

I want to shout to the world, but so few are listening,

to run and jump and thrive.

I want to shed worry, feel free as a bird,

to embrace others, not pass judgment at all.

I want to smile through a face sometimes sullen and dark,

to laugh through eyes cascading in tears.

I want to breathe through the times I feel stifled,

to move forward, only as time stands still.

I want my child to be healthy, but he simply is not,

want his seizures to stop but they hammer on through.

I want a cure for his fits, but so few are looking,

want him free from the drugs, not doped up for life.

I know what I want, that part is easy,

I want to be happy, and I've found a way there.

I want to speak for my son, which I've learned how to do,

I want to love and be loved. I am lucky it's true.

photo by Michael Kolster