a day in the life

photos by Michael Kolster and Christy Shake

gone

In the seven years since Calvin was diagnosed with epilepsy I have corresponded with four parents whose children died in their teens from seizures, two who drowned as a result. Regrettably, some of those parents, it seems, did not understand the severity, risk and mortality rate of epilepsy, likely because their neurologist didn't broach the subject. Then, in a blink, their child is gone. One parent recently wrote to me anonymously:

My 16 year old son died Jan 9th from seizures. He was on life support for 5 days. I found him unconscious on his bedroom floor. No one told me he could die from a seizure. I think they put him on life support hoping for organ transplant which I did let them do. I am thankful I had those five days to touch him and talk to him.

It is simply inexcusable for neurologists to avoid confronting the topics of SUDEP: Sudden Unexplained Death in Epilepsy, the fatal outcome of some prolonged seizures and the risks of fatal bodily injuries and drowning due to seizures. The failure to do so is partly to blame for society's ignorance of the devastating effects of this disorder and, thus, its lackluster funding for research.

The mortality rate of people with epilepsy is three times greater than that of the general population and the risk of accidental death is twenty-four times greater. If more parents knew this perhaps some of these deaths could be avoided. Grow some spines, neurologists, and buck up to the tough talk. You know who you are. What if he or she were your child? How would you feel?

Join us in our fight to cure epilepsy now. Go to http://www.calvinscure.com

One of many who have died, Kevin Andrew Mateczun, December 6, 1984 - August 8, 2001

big power

"When you're small, you gotta fix what you can."

—Hushpuppy, from Beasts of the Southern Wild

milestone

Meeting milestones: what every parent hopes for as their child grows. We compare them to other children, compare them to books, charts and graphs. I suppose it all starts with the Apgar scores minutes after a child is released into this cold, harsh, bright, unforgiving world. Then the question is, how well will she nurse? When will he smile? When will she roll over? Parents will wait with bated breath and then celebrate when their child reaches for objects, sits up, creeps and crawls, eats solid foods, points, manages finger food, stands, toddles, walks and says their first words followed by full sentences tumbling out of their mouths like an avalanche.

My son Calvin has left in his wake a long path of missed milestones. At nine years of age he still functions somewhere between an infant and a toddler. He has yet to master a pincer grasp. He cannot walk unassisted because of his poor balance (in part, likely due to the antiepileptic drugs) he cannot speak or use a spoon and he still wears diapers. But despite all of these obstacles he—and I—did something together for the very first time this weekend. We went grocery shopping without a cart.

I am strong enough to lift Calvin, who is forty pounds, into the shopping cart where his narrow butt will still fit. But because he doesn’t help raise his knees and guide his feet between the bars, it’s a feat I cannot tackle alone. So for years I’ve been patiently waiting and hoping that, one day, he could go grocery shopping with me by simply holding my hand. Saturday was that day.

We parked about fifteen cars back and walked holding hands across the lot. Once through the foyer into the store, Calvin was nearly mowed down by someone rushing around a corner. He toppled, but in my tight grasp he managed to remain upright. Then he squealed and reached up, which made me think our adventure was over before we’d even begun. In the past I've feared that the large florescent lights might trigger seizure activity; he’s had seizures in the store before. So I picked him up as he squirmed and clawed, then he let loose a huge belch, after which he was totally fine. Our nice neighbor girl Brittny, who was cashiering, gave me the thumbs up to stash our groceries in the recyclable bag around my wrist since I clearly couldn’t manage a cart or basket. Hand in hand, Calvin walked with me through produce to the meat department to pick up some chicken thighs then to get cereal and oatmeal, a bag of almonds and milk. At times I had to hold him by the harness and the scruff of his collar to prevent a fall as I precariously reached for an item. I switched from hand to harness and back again while weaving between throngs of pre-storm customers and their carts. If I’d had eyes in the back of my head no doubt I’d see plenty of gawkers. But I’m way past giving a rat’s ass about what anybody thinks and, at this point, I figure we’re the normal ones and the gawkers are the weirdos. And despite the fact that I was tempted to abort the mission on several occasions because of the ridiculous logistics, I was compelled by grit and determined to succeed.

We triumphantly paid and made our way through the parking lot as I gently wrenched Calvin’s wrist steering him away from the cars he desperately wanted to bang, and redirecting him toward ours. “Where’s our car, Calivn? Do you see it? There it is!” and, once he had it spotted, he made a pigeon-toed beeline toward it. When he tagged the car I showered him with praise, “You did so good, Calvin ... Mama’s soooo proud of you!” A big, toothy smile crept across his face, the result of my applause for a milestone met and one that, in the scheme of things, was no small feat at all.

photo by Michael Kolster

the kindness of strangers

A reader who I've never heard from before recently commented on a post about little Ronan and expressed her sadness at the news of his death. She added:

BTW, I am a mother of 4 grown children who have left the nest, so now we have a big house and a big pool and hot tub and nobody enjoying it. If you and your husband and Calvin want a place to stay for a few days this summer, feel free to call me. No charge. There's plenty of room; it's no big deal. OR if you ever need a place to stay near NYC; the train ride from our area is less than 50 minutes to Grand Central Station, it's free and hey, you won't get bed bugs from staying in a NYC hotel. hehe. Email me if the need should ever present itself. As one mom to another, I'd be happy/honored to treat you and your family any time.

It never ceases to amaze me—the kindness of strangers. Perhaps one day we'll be taking a dip in her pool.

where in the world

Written by Julianna

Where in the world have you had seizures? I have had seizures in Quebec; in the Dominican Republic (when I came to, my super-evangelistic host mother was kneeling over me praying); in Sicily with my orchestra; in Tuscany over a beautiful meal of pumpkin ravioli; in the Dominican Republic another time for my grandparents’ 50th wedding anniversary (I was so bummed when I dropped my fruit punch smoothie); in Switzerland in a beautiful outdoor pool looking up at the Alps; at the beach in Costa Rica (no te preocupes—es normal. Yo tengo la epilepsia de lobo temporal…)

I have also had seizures in eleven states plus Washington DC and ten college campuses—Smith, Mt. Holyoke, Amherst, Dartmouth, UMass Amherst, Bowdoin, Bates, Oberlin, Kenyon and Vassar. Naturally, I was nervous when I went college searching, which triggered my seizures. It became a running joke that I was marking my territory. My brother, Daniel, helpfully told me that he thought I would get into the colleges where I had seizures. Unfortunately, I applied early to Vassar, so I didn’t get to test this hypothesis.

This is to say that when you have epilepsy, seizures are your carry-on baggage: they come everywhere with you. Epilepsy will cause headaches when you’re hiking and cause you to wake up and forget you’re on another continent. But it should not hinder your adventures. (I am writing this post as I fly home from my semester abroad in Ecuador, happily remembering all that this semester has given me and eagerly looking forward to seeing my family.)

Julianna is a junior at Vassar College. She is majoring in sociology with minors in Spanish and neuroscience.

friday faves - ode to my brothers

brothers, I adore you.
so kind and wise beyond your years,
you always dry my tears,
and seem to know what’s wrong.
when I’m weak you’re so very strong.
you live in places far and wide,
in so many countries and of so many races,
though many of you live apart from me,
you all live forever in my heart,
and my heart is yours to keep,
you are my peeps.

brothers, you help my spirits soar,
keep me coming back for more
of your clever wit, your jokes,
you are all incredible blokes with such integrity,
I’m one of the luckiest gals in the world,
to have so many pals such as yourselves,
and though I have to share some of you with my man,
try as I can, I’ll steal you away some day,
you know who you are,
you are my brothers, near and far.
I love you through and through,
it’s true.

Kerream Jones

hot wheels

Calvin's new wheels, courtesy of the Robbie Foundation, via Eric Foushee. Now if the weather would just go above freezing and melt the snow and ice, we could get outside and give them a spin.

fear (with video)

As I look into my son’s face I see fear creep across it like a shadow. What does he see? I ask myself. A monster? A storm? Does he hear sinister voices or sounds? Does he sense the indescribable smell of death the way I used to in dreams? Does his body panic, is he terrified, does he even know what fear is? By the look on Calvin’s face—the look that I saw last night and have seen a thousand miserable times—any or all of these could be true, and it breaks my heart.

This look of fear slowly washes over him, a rising tide of foreboding that begs his eyes to gaze upwards as if pleading in distress to some ogre. Terror appears to flood his cheeks and bulging eyes, his mouth agape as he reaches out for me as if I can save him. But I cannot. I pluck him out of his johnny-jump-up as his body stiffens and he lets out a dreadful, blood-curdling shriek. I lay him on his side on the couch as he begins to convulse, as his fingertips turn blue. Michael watches the clock and, for four minutes, I speak to Calvin reassuringly:
 
"You’re doing a good job, Calvin. I love you so much. It’s almost over, baby. You’re such a good boy. Mama and Daddy are right here. It’s almost over, sweetie."

But I’m never quite sure if it’s almost over. A few months ago the seizure was seven minutes long. They used to be as long as twenty. One was forty-five minutes—the wretched one when we thought we’d lose him, so were kissing him goodbye.

A young woman I sometimes correspond with recently wrote about her seizures, about their fearful nature creating the sense that she was being chased. She confirmed the worry I’ve had for Calvin:

"regardless of the challenges I am faced with in the real world, because of the physiological nature of my seizures, I am confident that I will never feel as afraid as I did during seizures. Despite a logical understanding that I was safe, eight times a month, I felt like I was going to die."

I can only hope, since Calvin usually has seizures when he gets sick, that perhaps he will outgrow them, or at the very least have fewer the older he gets. In the meantime I can only offer my boy some reassuring words that, though I wish they were true, I consciously doubt just as they pass over my whispering lips.

i am not alone

I am not alone, and I know it because of what other parents share with me—share with the world—about their children who suffer relentless seizures, some even after long hiatuses:

This is my life. The gawking, the "Sweetie you should learn to behave for your Mama!" because despite all the delays and seizures, Maecy APPEARS normal (unless you attempt to talk to her.) It's maddening. When I politely tell them the same damn thing—that she's having a seizure—they appear almost offended, as if to say, "What kind of mother are you bringing your child in here?!" I'm the kind of mother married to a deployed submariner, 5000 miles from all family, who has no choice but to bring my seizing child to Target to pick up the six awful drugs she's on. I'm the kind that is doing the best I can—now WTF is YOUR problem, and what kind of person are YOU?! I've only said that out loud maybe once ... as someone literally stepped over her seizing body in an airport jetway saying, "She's in the way!"

 —Maecy's mom

Olivia is slowly coming back after about 3 weeks of lethargy, basically no language, and lots of seizures. She had a 4 word sentence tonight, "Do you want cake?"... which translated means 'I want cake.' We all agreed that this princess can have the whole thing if she wants!!!

—Olivia's mom 

Busy down here, lots with Leland and new doctors, nursing, etc. Record seizures in January and no one knows what to do. He had two episodes of Todd's paresis, losing use of his left side both times after a seizure and we all freaked out, especially Leland.  

—Leland's Dad 

I am not alone. None of us are.

photo by Michael Kolster

little seal, little star

Twinkle, twinkle, little star, How I wonder what you are. Up above the world so high, Like a diamond in the sky.

When the blazing sun is gone, When he nothing shines upon, Then you show your little light, Twinkle, twinkle, all the night.

Then the traveller in the dark, Thanks you for your tiny spark, He could not see which way to go, If you did not twinkle so.

from The Star, by Jane Taylor

My heart clamps in a vice grip. I feel I can barely breathe. My lids hang heavy over my eyes ... my sorry, sunken eyes. Every step I take feels empty, fatigued, worthless. I learned Friday that a woman I’ve grown to love—a friend of a friend—lost her little boy Ronan, her little seal, who I’ve also grown to love. Ronan wasn't yet three.

The day before he passed, Valentines Day, we had been driving to Boston to take our nine-year-old boy, Calvin, to see his neurologist where we'd talk about seizures and drugs and his recent weight loss. For whatever reason, while gazing out the windows at winter, I found my thoughts drifting to the Sandy Hook children who’d been gunned down back in December. My mind lingered with them, with the images of their fresh faces, dimpled cheeks and chins, little arms and sweet, toothy smiles. I found it hard not to imagine, too, those perfect, pure, supple bodies gone from this world, out of their parent's longing, loving reach. Later, after I’d remembered them in my blog, I wept as I pulled their faces up on my screen and realized it was the two-month anniversary of their massacre, this Valentines Day chock-full of blood-red hearts, foil-wrapped candies and little handmade cards boasting crayon Xs and Os and I love yous that their parents and friends never received from them.

The Sandy Hook murders have changed me, or maybe it’s Calvin’s improved behavior and overall reduction of seizures, or my recent, though relative, catching up on sleep. More likely it’s a combination of everything, that of late I’ve got more of a capacity for patience and loving, for overlooking the irksome, manic behavior of my kid, for submitting to his frenzied lust for hugs that sometimes hurt. After all, he’s so pure, his flesh so soft and spongy, his smile so—dare I say—heavenly, though if there is any semblance of heaven or hell no doubt in my mind they both exist right here on earth.

The next day I sent my sweet, skinny, snotty-nosed kid off to school, the two of us precariously skating across the crusty lake of ice that has become our driveway. “Bye Calvin, I love you!” I said, as I do every morning after praising his improving assisted effort climbing up the bus's steps, and then I kissed him goodbye. As his aide buckled him in, Calvin patted the window, as he always does, appearing as though he is waving to me, but I know that he is not, indeed wonder if he ever will. But in my mind I imagine the gesture to be true in an effort to mitigate my heartache.

Inside, I fixed a bowl of oatmeal with blueberries, then opened my laptop looking for some pearl of knowledge or art or beauty. Then I saw the post about Ronan, and my heart seized with the words his mother wrote:

Thanks, everyone, for the well wishes. Ronan died early this morning. In lieu of flowers or cards, please make a donation to the NTSAD—www.ntsad.org—in honor of Ronan as well as all the other children and their parents who have suffered from and continue to live with this disease.

The gut-punch sucked the air out of my lungs as I sat frozen reading her words over and over wishing it weren’t true, while at the same time relieved that Ronan was rid of any suffering he might have endured. Then I felt anguished and vexed that this mother has been robbed of the warmth and loving human touch of her most beloved, a touch that I have—regrettably—at times taken for granted. I wept into soggy blueberries and oats thinking of Tay-Sachs disease, which—with no exceptions—snatches little children like Ronan from their parents, and at such a tender age. This day had been coming for a long time, I knew it, could tell by Emily's posts and recent photos of Ronan’s gorgeous face in which—perhaps because of its slenderness—I could begin to see Calvin’s face. But one can never be prepared for this kind of news—the news of a child's death. I believe no imagery or prayer or drug or therapy or love or alcohol can truly assuage the grief. No God spares these children, no treatment halts its advance, no doctor cures it, no miracle saves these precious lives.

But the writing? Perhaps (and I hope with every fiber of my being) Emily's journey toward her son's death has somehow been soothed by writing, by tinkering with hard words, images and truths, by typing black letters that spell out loss, by wrestling with feelings as dark as ink and, too, blindingly brilliant, by moving through the thick, sometimes suffocating stuff of grief in hopes of swimming out the other side. I know it to be true for me. I remember one of my dearest friends, Lidia, telling me, after her daughter was stillborn, that the thing that saved her was her writing—literally saved her life. I have no doubt that it did. And like Lidia, Emily poured herself into a book, The Still Point of the Turning World, which, I believe, explores the journey with her dying son.

Twinkle, twinkle, little seal, little star, I think, and remember how on starry nights, well after midnight, I look out my window and see Orion, who I’d first fantasized as watching over Calvin and wrestling millions of little children’s seizures to the ground. But, at some point last year, in my mind Orion became Ronan’s Orion, cradling him in the night sky. And now, to sate my own sorrow, every time I see the unmistakable constellation high amongst a dusting of stars or hanging low in the western sky grazing the tops of trees, I think of Ronan. I think of the boy who touched a million hearts, a boy I never met whose life was too short and fleeting though more pure, powerful and selfless than some who’ll live on for decades. And, I’ll think of his mother as Venus, the Goddess of Love and indeed a most brilliant star to behold. She’s within arms reach of Ronan and his Orion. There they are, together, twinkling in the night sky like some dazzling brooch for the rest of us to cherish and keep in our hearts tonight, tomorrow night and forever.

Ronan Louis, photo by Jennifer Pastiloff

stars (video)

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

—Martin Amis

shelly's pen, victor's lips, my thoughts

Nothing is more painful to the human mind than, after the feelings have been worked up by a quick succession of events, the dead calmness of inaction and certainty which follows and deprives the soul both of hope and fear.

—Victor, from Mary Shelly's Frankenstein

photo by Michael Kolster

ronan

I've fallen in love with a woman named Emily and her son Ronan, neither of whom I've met. They are close friends with one of my good friends. My heart was crushed today to hear that when I was feeding Calvin this morning Ronan was taking his last breath. He died peacefully amongst friends and family. I'm not sure he was even three years old, but during his short life he and his mother touched thousands of people's hearts. If you can, please donate to fight Tay-Sach's disease at http://www.ntsad.org/

photo by Jennifer Pastiloff

boston down and back

Up at five-thirty. Seven o'clock departure. No shower. Not enough coffee. Packed everything but the kitchen sink. Snowy banks and pines. Staring out the window thinking of Sandy Hook kids, of ridiculous, dangerous, stupid guns, of Noah Pozner's precious, little hand and jaw shot off. What if it was my boy? Second amendment, my foot. The world could be a better place without those guns. We are the lucky ones.

Traffic. Potholes. Boston. One neurologist's lovely face. One dietitian's lovely face. Hugs. More hugs. One bonk on the head. Tears. Body Mass Index 13.9 = Fourth percentile. Skinny, skinny boy. Effing drugs. One flawless blood draw. Painful nonetheless. Goodbyes. More traffic. Potato chips and apples. Yogurt and PBJ. Sunshine. Forty degrees and balmy. Snacks. Sick boy. Nap with eyes half-mast. Photos. Love. Will slightly reduce one of three drugs. Then wait and see. Two-thirty return. Glad to be home. Exhausted. But I have my boy.

peas in a pod

Figuring out how I can leave Calvin and Michael behind when I fly out to visit my mom in San Diego is no easy task, and it'd be akin to masochism to take Calvin on such a long flight to a place where we wouldn't be able to use his johnny-jump-up, or have an enclosed bed or a high chair that would fit him, all of which are our saving grace. So instead, I've got to coordinate their spring breaks so that Calvin is in school while Michael is not. Then I've got to get nursing coverage to help Michael out while he works his long hours in the studio. Plus, he's got to make Calvin's meals, grocery shop, do the laundry, walk the dog, prepare Calvin's meds, change his diapers, repeatedly get up in the middle of the night to reposition and cover Calvin, and get him dressed, fed and ready for the bus, most of which cannot be done easily because of the necessity of hands-on assist to Calvin.  But I need to see Mom, and I always plan the trip thinking it might be the last time I'll set my eyes upon her, or any semblance of her.

On the phone the other day she wasn't as peppy and upbeat as usual. I wonder why one day is different than another, but then I realize that is the way of the world and why should Alzheimer's be any different. She asked me where I was and when I'd be coming to visit. I told her—again—that I lived in Maine with my husband and child and that I'd be coming to visit her in the spring. Then she piped up a bit.

"Oh, that'd be superduper!" she exclaimed, "I can hardly hope to meet you!"
"Me too, mom, we'll do a lot of fun things together. How does that sound?"
"That sounds grrreat!" she replied.
"What kind of things would you like to do when I'm there, Mom?"
"Oh, I haven't even thought about it."
"Would you like to go out to lunch?"
"You betcha!" she exclaimed (her most favorite reply) then added, "Get here quick, Hon."
"Why?" I asked, with some concern, maybe reading too much into her request.
"Because I love you," she said, and my heart skipped a beat.

And so, in the face of loosing one of Calvin's best nurses ever to a better paying job, I'll have to wrangle up another one somehow so I can leave my boys behind without risk of driving Michael into the ground, without breaking his back or his spirit or his great sense of calm caring for our crazy nine-year-old kid who can't do anything for himself. Then I'll sail away to California to help take care of my mom to some extent, to hold her hand on long walks, manage a few of her meals so she doesn't eat to fast or devour the salt and sugar packets on the table, help her in the bathroom, sleep in her bedroom a couple of nights to give my brother a break, and get up with her several times when she wakes and needs to go to the bathroom. So much like caring for Calvin, I think.

And though it likely won't happen again, I think to myself and smile, if I could just get Calvin and Mom together, I know they'd be two lovely, silly peas in a pod.

March 2012

a hard battle

Be kind, for everyone you meet is fighting a hard battle.

—Plato

And please give what you can now to CURE epilepsy: http://www.calvinscure.com

Senior Chief Hospital Corpsman Huben Phillips holds a young earthquake victim that he helped evacuate, on the USS Bataan, off the coast of Haiti, January 20, 2010. UPI/Kevin Dietsch ...

determination

So much went right. So much went wrong.

I'd spent months successfully arranging our annual benefit, inviting over 1500 people worldwide to donate to epilepsy research, spent hours choreographing food and beverage and gift certificates and helpers and music. As the event approached and things fell into place I happily looked forward to seeing the smiling faces of 121 friends who said they were coming, some of whom I'd never met before.

But, with great vexation came the storm of the century—Nemo—though I held out hope that it would pass before the event started. I was watching the weather the way a day trader watches ticker tape. Several restaurants backed out because of the inclement weather, which caused me much fretting. I worried about not having enough food, worried about baby sitters cancelling, worried about my guests' safe travels.

Then right before we were to leave to go set up, Calvin had bad a seizure—a four minute tonic-clonic. He'd been in the bath again. His lithe body stiffened and convulsed, something it hasn't done for months, and in the absence of oxygen his lips, hands and toes turned dark purple as if they'd been stained by blackberries. It pained me to leave him in such a state—trembling and struggling to suck his thumb in the post ictal fog that follows the seizure. But I knew he was in good hands with his nurse, Beth, who tucked him in tenderly and watched him as he slept.

And so, Michael and I went downstairs and gathered the platters, the bowls, my gown and shoes, the veggies and cheese and crackers and raffle tickets ... and we left him, something I'm not sure we've ever done before. It was unnerving.

At that point I had no idea what to expect in terms of numbers of guests. The snow had stopped hours earlier and most of the roads had been cleared to some degree, though iced and slippery, but the wind still whipped in fits and starts. Snow banks and drifts, some as high as six feet or more, flanked the streets rendering the sidewalks impassable.

But, as if in perfect Calvin form—the kind of perseverance and determination we've seen him exhibit when first learning how to nurse, or struggling to hold his head up, or learning how to crawl, to chew, to stand, to walk, to rally after bad falls, prolonged seizures, days in the hospital, enduring endless seizures and debilitating anticonvulsant drug side effects—our determined friends shoveled for hours, rearranged childcare and tag teamed with their spouses just to get there to be with us and to celebrate Calvin's ninth spin around the sun.

In short, our guests kicked Nemo's ass, and with more hard work, generosity, determination and compassion, we'll kick epilepsy's ass, ta boot. Thank you for your charity and love.

Please join us and donate to CURE epilepsy at: http://www.calvinscure.com

Calvin, at six months, struggling to hold his head up

smokin' hot guests

Here, Michael and I are partying with seventy-five smokin' hot guests who, with scores of other friends and loved ones, have helped us raise over $17,000 during this year's CURE epilepsy benefit. If Calvin could only know what you are doing for him—for us—he'd be amazed.

We sorely missed those of you who were detained due to insurmountable snow drifts, flu and general inclement weather. Thank you for the kind and generous support that you showered on the event, nonetheless. You da bomb!

For the seventy-five or so of you who braved the gale: you kick major ass!

For the gobs of incredibly generous folks who gave so much in honor of Calvin's ninth spin around the sun—many of you who have never met him nor have met us—you rock my world.

For the amazing restaurants who contributed food, some of whom made special arrangements due to the storm, I am indebted to you and will send you patrons to the best of my ability.

Thanks to my homegirls for the gift of several massages to help me take care of me. You know who you are. Smooch!

To my friends who helped with pickup and setup and cleanup and drop off, I couldn't have done it without you!

To Jason and my lovely EB, for giving us your precious time behind the bar. XOXO!

And to String Tide, whose music amped me up while soothing my soul, thank you and I hope to see you again next year!