on my knees

I had to crouch on my knees and watch another one yesterday, my eight-year-old child blue, crooked and trembling. They’re scary and always have me wondering if this might be the one that lands us in the hospital—again—or worse ... doesn’t stop.

I’d been settling into my evening back at home after a whirlwind trip to Boston for a CURE epilepsy benefit. Calvin had come home from school a total maniac—bouts of hysterical laughter, pulling my hair out in his fists, collapsing onto the floor at a whim, screeching at the top of his lungs, flailing his arms and standing up in his high chair and—a new warning sign—gazing up at the ceiling tracking some apparition invisible to me. I said to myself, he’s either got to poop or he’s gonna have a seizure tonight. He did both.

He had just finished eating a measly dinner during which he smacked my hand dislodging a spoonful of yogurt into the air. Luckily, Rudy licked it up off of the rug. Michael got Calvin out of his high chair to walk him around the house to coax out any painful burps. Neil Young’s new album—blaring into the sheetrock—eased my body and mind into a satisfying groove as I grated some cheddar for nachos. From the next room I thought I heard a strange squeak, so perked my ears to hear Michael calling me. As I rounded the corner they were both on the floor, Calvin’s head gently cradled in Michael’s hand, his face bluer than I’d seen it for some time. His fingers tinged purple as his arm, bent into a ghastly hook, pulsed with each convulsion. I kissed his face and told him it’d be over soon, as if my spoken words could train the seizure to obey.

After these seizures, when I put Calvin to bed and cover his little bird body that tries to suck its thumb, I wonder how we can live out our lives like this, wonder if they’ll ever cease, if I’ll ever be able to stop shoving chemicals down his throat every morning and every night, if I’ll ever be able to go to sleep without worrying, without having to listen to the baby monitor, if we’ll ever have our lives back which, almost seven years ago, were thieved by this monster, epilepsy.

And because I know so many people think—falsely—that epilepsy is a benign disorder where you take a pill and everything is okay, I share the video below. It may be difficult for some to watch, but it’s part of the story—a visual account—of the horrors of living with epilepsy. It must be exposed for what it is: a terrible condition where, for many, the present is punishing and the future dim. We need a cure and we need it now. Please, do what you can.

out into the real world

I entered the real world again yesterday after a two-hour bus ride to Boston. First on my agenda was to get a shine on my scuffed boots so they’d look nice enough to wear later with my black silk dress. His name was Edward, and as he polished, brushed and buffed my boots amongst the hubbub of Boston's South Station we talked about Lewiston, Maine, friends, children, grandchildren and epilepsy. Sorrow crept over his face when I told him about Calvin, who can’t talk, can’t walk by himself and still wears diapers though he is almost nine years old. I explained that all that didn’t matter compared with the living nightmare of seizures, drugs and their side effects. He said with sympathy, perhaps even empathy, “I know how ‘tis,” and I understood him to mean he knew the pains that come with parenthood. I stepped down off the leather bench, shook his hand and told him I’d be back next time with a different pair of boots for him to shine. He smiled and waved.

In the subway, two Berkeley School of Music students played fiddles with the deft and dexterity that belied their tussled hair, skinny jeans and worn-out canvas sneakers. I tossed what change I had into their open case.

At Harvard Square I ambled down the streets, cold hands stuffed into my pockets, an aching shoulder from the weight of one heavy bag. It felt good to be in the “mix” again—people of all different colors and walks of life. I snuck into a little Italian deli to purchase a split of Champagne for my hosts, Susan and David Axelrod, whose daughter Lauren has epilepsy. To show my thanks I’d have it delivered to their room in the hotel. Then I resumed my hunt for a cup of coffee and a piece of cheesecake, which I never found, so I settled on a designer cupcake that was even too sweet for me. I bought an extra one that I gifted to a homeless man standing on the sidewalk holding a bent cardboard sign. As I approached I met his friendly eyes and said, “I got this just for you,” and he gave me a big, warm scruffy smile. “It’s very sweet,” I cautioned, and he told me that was just what he needed.

For the first time in a long time I felt vigorously alive. I breathed deeply the cold air, closed my eyes to drown myself in the sounds and smells of the city, a place where one can truly embrace humanity with all of its blemishes, shortcomings, wonder, generosity, diversity. In the twilight I exhaled with a satisfied sigh and made my way along the river to the hotel.

Last night at the CURE epilepsy benefit at Fenway Park—the reason I’d come to Boston—I found myself in an a diametrically opposed circumstance from my afternoon walking the streets. I stood elbow to elbow with hundreds of donors. They each payed $1000 for a seat at a table dining on tuna tartar, crispy wonton and the biggest portion of filet mignon I’ve ever seen resting on a delicious bed of sautéed spinach and scalloped turnips, all cooked to perfection. At the cocktail reception I hugged my host and friend Susan and later squeaked through the crowd to introduce myself to her husband, David. “Can I hug you?” I then asked, and he kindly obliged before holding my hand and telling me he was an avid reader of my blog. In a soft, round voice he went on to say how he admired my style of writing. I blushed. At that moment, Senator-elect Elizabeth Warren appeared and David introduced us. In my nervousness I called her Margaret [my default position because of Margaret Warren from my beloved PBS News Hour (later my husband reminded me that her name is Margaret Warner, so I am totally messed up.)] After we shook hands I unabashedly gave her my card, the one with the photo of Calvin and I on one side, the blog address on the other. Upon hearing about Calvin, Elizabeth became animated—impassioned—about the need for epilepsy research and how much more must be done. I nodded and smiled in great agreement, congratulated her on her recent win, said so long to them both then gently slid away through the handsome throng of dark suits and little black dresses.

And I made some other new friends: Leanne, a mother of a 22 year old son with severe epilepsy that doesn't respond to medication, her BFF Tammy who came along for support, my dinner companions Abby, Stephanie, Kim, Jackie, Ernie, Cathleen and Wendy, and two handsome young men who I didn’t get the chance to speak with, sons of the event co-hosts, Anne Finucane & Mike Barnicle whose daughter, Julia, has epilepsy.

A highlight of the event—and there were many—was a speech made by Carol Fulp, a beautiful, brilliant, successful woman with epilepsy who lived with it for fifty years before telling anyone because of its deeply rooted stigma. Her speech made my skin tingle with love and admiration for a person facing much adversity in life, not only as an African American woman, but one bearing—then overcoming—the secret burden of her epilepsy.

I closed the night with a few photos, some good laughs, several heart-felt hugs with Calvin’s neurologist, Elizabeth Thiele, who I absolutely adore, more hugs for Susan and for David then off with my new homies, Leanne and Tammy, whose driver Georgie took us to my hotel for a nightcap. I closed my eyes around midnight, just after an excellent segment of Charlie Rose interviewing Andrew Solomon about his new book Far From the Tree followed by a poignant discussion about racism and mass incarceration in the United States. Must. Stay. Awake.

What I said to David Axelrod is true, I don't get out much. But last night brought into sharp focus what my husband tells me, that getting out into the real world is something I most definitely need to do more of. And with any luck, I will.

unutterable

I turned silences and nights into words.
What was unutterable, I wrote down.
I made the whirling world stand still.

—Arthur Rimbaud, from A Season in Hell

photo by Michael Kolster

office call

Interior home, mid morning. Calvin, snotty-nosed, plays listlessly in his jumper. Phone rings. It is the nurse's assistant from the pediatrician's office calling.

Nurse's assistant:
I'm calling to tell you that Calvin's throat culture came back negative for strep.

Me:
That's great.

Nurse's assistant:
Is he feeling better?

Me:
I think so, but he still has a runny nose and I kept him home from school again.

Nurse's assistant:
Is he still complaining about a sore throat?

Me:
Well, he's eight and he can't talk. But I think he's doing better. Thank you for your call.

Then I hang up and pause. With my head in my hands I think to myself, oh, if only my child could complain.

sick boy

lydia's story

Written by Anonymous

My story is just another shitty version of all the others, but it goes like this:

I was turning thirty-nine when I had Lydia, our third child. Normal pregnancy, normal birth ... everything was "normal" until she was almost two years old. Then she started dropping, seizing: atonic, tonic-clonic, myoclonic, absence ... all of them came in a flurry with a fever. There had been some earlier seizure activity that I only recognized as seizures after we learned about them. We were admitted to the hospital after an EEG that the technician implied was "very, very bad" (shame on him!) From there she had an MRI, which left us still pondering the "why?" because everything looked "normal."

I remember thinking please don't let it be a brain tumor. I had no idea that epilepsy was not benign, so I was hoping for epilepsy over a brain tumor. Little did I know, a tumor might have been able to be removed. Little did we know, this F-monster—epilepsy—was here to stay.

In the hospital Lydia began taking Depakote, and it stopped her seizures. Ignoring the doctor’s recommendation I did no research and left with my baby who seemed to be doing fine on the Depakote. Our struggle was how to get Lydia to take the sprinkles and make sure it all went down. Within a week, the seizures returned: all atonic seizures at this point. She dropped like a marionette with its strings cut. There was also some suspicious "blinking" that we learned was subclinical activity, but the blinks lasted longer and looked like the start of a drop. We kept increasing the Depakote until we couldn't anymore—her blood levels were too high—so we added Keppra. The Keppra didn't help, but by this point her doctor had said things like, "if we don't get these seizures under control your daughter will regress and lose all of the skills she has now." Lydia was not talking yet—a warning sign that I had attributed to her being the third child. He told us that she would never go to school. He told us that the medications she was headed for had fatal side effects. He told us she likely had Lennox-Gastau syndrome. I started to research ... and lose it.

We decided to get a second opinion. In doing so we learned that our doctor had failed to tell us to bring Lydia for lab work prior to giving her the morning medications, to get a “trough” level. This was why her Depakote blood levels had kept appearing to be too high. We fired Lydia’s first doctor who was quite young, clearly did not have children, had a poor bedside manner and was not an epileptologist.

Increasing Lydia’s Depakote and removing the Keppra helped while we waited for the new epileptologist to start at our local hospital. Though he was also young, he had a daughter exactly Lydia's age, was very empathic and kind and was far more knowledgeable about epilepsy than the physician we had fired. Still, it took three years of trial and error, allergic reactions and catatonia to get adequate control of Lydia’s seizures, which eventually returned after each drug increase and each "honeymoon period." We had to make a very difficult decision to try Felbatol, which came with so many warnings including a waiver that said we understood the fatal side effects and would not sue the drug company if Lydia died. Meanwhile, Lydia was not losing skills, but she was not progressing much either. The hundreds of thousands of mini seizures, which looked like the start of a grand mal or myoclonic seizure, though lasted only seconds—not even long enough to knock her down—were wreaking havoc on her brain.

Lydia has idiopathic generalized epilepsy ... possibly—though without certainty—Doose syndrome. The majority of her seizures are myoclonic or astatic, so her diagnosis is Myoclonic Astatic Epilepsy (MAE). We are five years into the nightmare, which compared to others' journeys, sounds like a cakewalk. But I have learned that it doesn't work that way. Epilepsy spares no one, really, not even the ones whose seizures miraculously, spontaneously just stop. Lydia will likely not be one of those cases. Her EEG is a mess. She is developmentally disabled and I find myself whispering the word "retarded" when I can see that the new, politically correct designation doesn't mean anything to my parents generation ... and even to some well meaning contemporaries who want it to not really be "that bad."

I would not trade in Lydia for a new Lydia, nor would I refuse having another child if I had been warned this might be possible. But I live on a cocktail of antidepressants and anti anxiety medication. I used to be pro-therapy, anti-drugs until I had my first panic attack five years ago. I have only three, close pre-epilepsy friends who remain after a mass exodus of other friends I later realized I made all the effort to maintain. Our families both live thousands of miles away and are not very supportive. They want to make things better and don't understand that listening and validating are more important than trying to change the subject or focus on the positive. My two oldest children keep me from lingering in dark places for too long. I am a busy stay-at-home mama.

Lydia’s future depends on the discovery of new drugs, new therapies—a cure. It is unlikely that her seizures will relent. This is my story, Lydia’s story. In the scheme of that which is epilepsy, I realize that we are actually the lucky ones. No matter. It still sucks.

photo by Michael Kolster

belief

I wish I’d had a conversation about the universe with my dad, but that wasn’t the kind of relationship we had. Our connection was rooted in the physical, in the doing not in the saying. My dad had that same kind of link with the natural world—didn’t much talk about the beauty in things, didn’t call out the colors of a fiery sunset or the way the dew sparkled on a downy rhododendron bud, though I know he enjoyed these things. Instead, he’d gaze out at the world with a look not unlike a smile simply soaking up the moment.

Ours was a relationship of few words. My dad revealed the majesty of a thing—a moment—but not by underscoring its mystery with vocabulary. Instead, he showed beauty to me in simple things like choosing the perfect green sapling to whittle into a spear and the art of sculpting a lump of sticky dough around its end and how to roast it over an open flame to a perfect golden crisp. He showed me charm in the melting of a cold pat of butter into its baked center watching it pool, steam rising from its moist center. And together we'd enjoy the splendor of its flavor, as much from its aroma and texture as from anything, with a simple, smiling "mmmmmmm." Then we’d huddle together, the campfire warming our faces, close, hot denim singeing our knees, perhaps charring a sneaker toe in the flames. We'd poke sticks into the embers coaxing sparks that, like fireflies, spiraled into the blackness before disappearing. The cold night hugged us tightly, as if we were a glowing capsule in the center of space—of the universe—which of course we were, and I'd sit there hoping that moment under my dad's heavy arm would last forever.

As for the cosmos, I used to wonder if my dad was a man of faith, if he ever prayed. I know my mom did, though she was often cursing God for making life so hard on her, what with six kids and all, curious why He never seemed to answer her prayers. My dad, on the other hand, didn't utter a word about God. But still, I wonder if he prayed—perhaps reflexively—for things like a boost in the modest salary he brought home to his growing family. I wonder if he prayed to stop having kids (he and my mom used the rhythm method—most unsuccessfully—as birth control.) I wonder if he prayed for us to get straight As, to win a race, to go to college. I wonder if he prayed for us to make it home safe at night and not get into a car accident (it seems, if he did, those prayers went unanswered on a couple of occasions.) I wonder if he prayed for my brother to get a decent job or for my mom to lose weight or for me to break up with that lame-ass compulsive liar. I wonder, if he were alive today, would he be praying for Calvin to stop having seizures?

But I really don't think my dad was much for prayer. And knowing him, I doubt he believed in Christianity with all of its scriptural talk of angels, devils, sin, heaven, hell and a Man upstairs answering supplications—or not. Dad was more of a pragmatic kind of guy, down to earth, and I'm pretty sure he figured that, after a good go at life, he'd simply die and become part of it—the universe—and that'd be it. I imagine it sounded just fine to him to join with the stuff of life—the dirt, the carbon, the oxygen, the nitrogen—earthworms churning it all up into rich soil nurturing some plant or tree that a child might one day prune and sharpen into a skewer to roast marshmallows or hot dogs.

I think about our relationship and how similar it was, in some ways, to the one I have with Calvin. It's reflected in the way he and I are so physical, the way we tickle, hug and kiss, cuddle and hold hands and in the way we don't really have conversations—can't because of Calvin’s speechlessness. It's mirrored in the way we hang out in the backyard caressing the grass and the rough bark of trees, enjoying bird songs and wind in our faces, in the way I show him blooming flowers that I hold under his nose to smell. My boy seems attentive to these things—when so may other things elude his interest—in a way I can't explain but by the passing down of genes, of my dad's gift to me that I in turn gave to Calvin, and it makes me happy.

A few summers ago on the sidewalk outside our favorite coffee shop we met an unusual music man plucking away sourly on his guitar and singing an off-key, nasally tune. We got to talking with him on occasion, whenever we saw him sitting there in his electric cart. He told us of the accident he'd had while drunk driving with his best friend when they were teenagers, how he was thrown from the car and hit a post or tree, about how his friend had died. The man had suffered a terrible head injury, went into a coma, begun having seizures and eventually had to relearn everything as if he were an infant, how to walk, how to talk.

We take Calvin with us to that cafe and guide him through the cozy joint between round tables and errant chairs, past the sharp knees and elbows of coffee buzzed patrons, some with laptops, others sketching or reading. From an inside corner couch the music man eyes Calvin and tells me, in a slurred mumble nearly imperceptible, that all Calvin has to do is to believe—in God and in himself—and he will heal. This is when I politely disengage. I smile and nod and lead Calvin back to the couch where Michael sits with his hot coffee while munching a toasted bagel. As we stumble away I consider whether Calvin is capable of having any kind of belief system. What I am sure of is that he—like my dad was—is rooted in the here and now, in the love of the physical world and that which is in front of him, unaware of what might be coming around the next corner or what the next moment might promise. But whatever it is, it’s enough for him not to have to believe, but rather simply to exist, to love and be loved.

I often hear myself say to my boy, "you know I love you, don't you kid?" just like my dad used to say to me. Sometimes he giggles, though I can never be sure if he understands me or just likes it when I  whisper in his ear. No matter, I smile and close my eyes to dream of Calvin and Dad walking hand in hand through a damp mossy old-growth forest where the forget-me-nots bloom in a delicate blanket of cornflower blue and white. Dad's ashes are resting there now under a canopy of blue, green and gold—or sparkling blackness—that one day, perhaps, I can gaze out at in splendor with Calvin and not have to believe in anything but that moment we share in the universe.

Originally published 11.28.11.

In honor of epilepsy awareness month and the three million Americans who suffer from it, please share Calvin's story. Help bring us one step closer to a cure. 

photo by Christy Shake

idiot. savant.

At first, before the epilepsy, when I’d tell people about my toddler son’s gross developmental delays—the fact that he couldn’t hold his head up until he was almost a year, couldn’t crawl until he was two (and even so, has never crawled very well) the fact that he utters no words, the fact that he can’t walk without falling and thus needs a spotter—they’d say things like, “oh, he’ll catch up,” or “you know, I heard about this boy who didn’t say ‘mama’ until he was eight but he could play Beethoven compositions on the piano after only hearing them once.” Somehow I knew that wouldn’t look anything like Calvin’s future, and though they meant well, their comments only served to belittle and exacerbate a difficult and heartbreaking situation. And then came the relentless seizures, and the drugs—mountains of them—and Calvin's future, his development, seems more bleak with each passing year.

I first heard of a man named William Sidis on the car radio. Born in Manhattan in 1898 to Jewish Ukrainian immigrants, he became a child prodigy. At the age of eighteen months he could read the New York Times and had reportedly taught himself eight languages in as many years, in addition to creating an entire language of his own. He was ready to enroll at Harvard when he was nine but the university wouldn’t admitted him until the age of eleven, citing that he was just a child. And by twelve William Sidis was lecturing the Harvard Mathematical Club on four-dimensional bodies.

Sidis was a whiz at math. It is thought that he had an I.Q. fifty to one hundred points higher than Albert Einstein, that in fact he had one of the highest intelligence quotients ever recorded. But he lived a life of relative seclusion, estranged from his parents before dying at the age of 46 from a cerebral hemorrhage. I doubt, from what little I’ve read and with all his celebrity at the time, that he was a very happy person.

It pains me to see that by the standard dictionary definition Calvin is an idiot, though perhaps he might not have been if it weren't for the countless seizures that batter his brain and the mind-numbing drugs meant to stop them. But if Calvin was a child prodigy, a math wizard, a musical savant like Mozart, a chess champion, a genius or had a photographic memory like the character in the film Rain Man, it would be no consolation to me. It wouldn’t assuage the rancor and suffering of his relentless seizures. I’m not even sure it would serve to make him happy. As it is, I’d give anything for Calvin to be healthy—not different—just healthy. I’d give anything not to have to stuff all of these chemicals down his throat every morning and every night, which he does so dutifully, even when he doesn’t want to eat because the drugs upset his stomach and or suppress his appetite, especially of late.

So, no, Calvin can’t recite Bach or Chopin, can’t even plunk out a tune on his little yellow plastic four key piano. He can’t make a mark with a crayon much less scribe a simple equation on a big black chalkboard. He can’t win at chess, beat the dealers in Vegas or tell us what day of the week it was the day that we were born. And he can’t recite pi to 22,500 decimal places like Daniel Tammet can. But Calvin can do what no other human being on this earth can do, which is to love me in a way that is so utterly beyond words, no genius could come close to describing, even if they tried.

Originally published 11.23.11.

In honor of epilepsy awareness month please share this story with others. Help bring us one step closer to a cure. It's as easy as pushing a button. 

Wolfgang Amadeus Mozart

Daniel Tammet

William Sidis

Calvin and his Geepa

rudy the dog

He’s reddish brown and sometimes pretty dang scruffy, a big hairy beast with menacing fangs and sharp, black claws. Even so—and at times we find it bizarre—he lives with us in our home and is a part of the family. The old salty dog follows us around everywhere, often under foot, is never but a few feet away. In people-years he’s a wise old sage, an octogenarian, with the stiff arthritic joints to prove it. In this crazy household I imagine my generous peppering of the F-bomb has contributed to Rudy’s grizzled muzzle and white belly, though of late my beloved expletives fall on deafening ears.

Just like Calvin, I give Rudy pills every morning and every night folded into a little pat of butter to mask their bitter taste. Besides butter he’s developed a keen fondness for bits of Calvin’s errant carrots, apples, strawberries, mangoes, olives and even broccoli, as long as it’s slathered in mayonnaise. He’s also been known to nosh on kitty litter corn-pone, barf it up in the snow then go back later for more. He’ll eat grass and bugs and dirt and sometimes dog shit, too, but above all else is his desire to lick the ice cream carton clean as a whistle.

When we adopted Rudy over six years ago he came equipped with all the manners of a well-bred dog: friendly, calm, loyal, reliable, well behaved and, best of all, under voice control. We can leave food on the coffee table and exit the room without worrying that he’ll scarf it all down. When we tell him to, and without so much as a complaint, he’ll drop random pieces of food—mid snarf—that he finds on the college campus such as slices of half-eaten pizza, rice crispy treats, apple cores and bagels.

Poor Rudy: exposed so to a somewhat stressful household complete with manic child, and an often grumpy, cussing, frustrated mama. But he finds relaxation lying in the front yard all day long on a sunny patch of grass just watching the world go by. He stays there for hours, untied, as passers-by greet him before moving on. We don’t worry. We have enough worry over Calvin, which is why Rudy is that much more amazing.

There was a time, years ago, when in the middle of the night Calvin had had a bad seizure, which very visibly upset me. Sleep deprived, tensions high, patience short, harsh words were exchanged. So Michael slept with Calvin while I retired to the guest room to sleep with Rudy. Nervous and shivering Rudy climbed up onto the futon. He stretched out close alongside me, his paws resting on my shoulders in a full-body embrace as if he were human. He’d never done that before, and as I cried he licked my face.

And though Rudy and Calvin appear to be completely ignorant of each others’ existence, Rudy follows the two of us around the house and yard as we walk hand-in-hand, hand-in-harness, and never strays more than a few steps away.

photo by Michael Kolster

thanksgivings

Husband. Cease fire. Tawny Port. Twenty-pound Milkweed Farms turkey. Beth and Bebe: amazing nurses. The Pres. Good books. Anticipation of numerous pies a la Gifford’s old fashioned vanilla ice cream. Seizure free days. Neil Young. Ambient light. Calvin taking the stairs. Candles. The smell of sautéed shallots. Grey hairs. Slide guitars and Japancakes. Extended family. Butter. Walking across the field with Rudy. Clean house. Happy boy. School days. Community. All things Cafe Creme. Bonfires on cold starry nights. Breakfast BLT at Tony's. Naps. Therapists. Faraway friends. House guests. Mom and her momisms. Hot showers. Low hanging mist. Little hugs. Michael's photos. Writing. Bus drivers, teachers, and ed-techs. Sunsets on fall leaves against dark skies. Bed. Public broadcasting. Readers. Thoughts of Dad. Brothers and sisters. Humor. Trying to play harmonica. Giving.

photo by Michael Kolster

the sight of the stars

For my part I know nothing with any certainty, but the sight of the stars makes me dream.

—Vincent Van Gogh

Vincent Van Gogh - The Starry Night [1888]

powerless

Often I surf the web looking for companion images to use on this blog. Common search words I use are seizure and epilepsy. While hunting for an image to go with a post about the aftermath and subsequent power outage of hurricane Sandy I came across the one below. At once it reminded me of what a seizure might be like for those who suffer from epilepsy. The following words bled into my mind:

surge. prick. smother. blackout. pain. confusion. thug. shred. blind. strangulation. fear. attack. electric. shock. wired. dizzy. hold. on. bludgeon. helpless. brain. scramble. burn. cramp. coma. choke. alone.

Then I saw the name of the album ... POWERLESS. How miserably apt.

Powerless, by Linkin Park

insanity

I’d love to procure a couple of matching straitjackets, one for Calvin and one for me. I like the utilitarian look with all of those cool buckles, belts and grommets, not to mention their purpose: restraint. I envision mine in a buff Irish linen double-cloth while opting for a clean white toothy canvas for Calvin. Perhaps one day we'll transform Calvin's room into a padded cell, which we'll of course share in our mutual insanity.

Again, I wake up to the jarring sound of Calvin’s head banging against the safety panel on his bed. Though it’s padded it unleashes a sickening thump-rattle unnerving enough to jolt me out of my skin and shed bits of delicately grey-streaked brown hair that commingles nicely with Rudy’s, which happens to be everywhere. And though it’s my greatest dream to hurl the frigging baby monitor across the room and stomp on it, I can’t even turn the bloody volume down because I need to hear if Calvin has a seizure.

I repositioned him almost every hour during the night and at 4:30 a.m.—his new normal wake-up time—I've got the sleep deprived hangover of a physics student whose just pulled an all-nighter scarfing cans of Red Bull, bags of chips and hand fulls of M&M's. Finally relenting to the mind-rattling ruckus, I fetch him and bring him into bed with me. Michael is away, no doubt sleeping in late after a blissful, uninterrupted night. What with Calvin’s flailing arms smacking my face, his fist a perfect mate for my eye socket, I put him into what we call a “mama-lock”—my leg over his legs with a firm hold on his arms in an effort to calm his mania so we can both go back to sleep. Often, it works, both for sleep and for averting a black eye or a bloody nose (mine.)

As I hold his hand under the covers he begins to settle, and I think about how big and strong he is getting. I muse on the straitjacket. As my mind ambles toward sleep I remember something my parents told me, about how they struggled with my brother’s thumb sucking, feared he would ruin his bite and have to get braces that they couldn’t afford. They told me they had put hot pepper (or was it hot sauce) on his thumb but to no avail. Instead they tied his hands to the bed frame so he couldn’t reach thumb to mouth. I shudder at the memory of their description. My stomach sours imagining my brother as a helpless little tot simply wanting—needing—the self-soothing we now know is so important to a child’s healthy development, while at the same time understanding my parents' worry. Heartache.

My sweet boy’s breath fans my face as he drifts off to sleep. I let him loose from the mama-lock and drape my hand across his shoulder, kiss his forehead. No matter how insane this household gets hopefully there will be no straitjackets. I’ll leave that one open for interpretation by the next new fashion crazed designers. Straitjackets, padded leather truckers and Kevlar jeans. Perhaps already been done.

water torture

How to best keep our cool when our kids bring us to the brink? That was the question my friend and I considered while commiserating over the phone the other day. We were sharing stories about our childrens’ hyperactivity (whether seizure/drug induced or not) mischievousness, and stubborn refusal to listen or follow instructions. She mentioned how the acts themselves, all minor offenses, are really no big deal, though taken in aggregate she (and I completely agree) oft finds it challenging to remain calm in the face of them.

My take on it, I told her, is that dealing with some of our kids’ behavior is like enduring water torture, explaining that one or two—even a dozen—beads of water is harmless, but incessant dripping can cause great distress. I went on to wager that if it were possible to lie still for years under the constant peck of dripping water, said water would eventually drill a hole through our skulls right into our brains. We both had a good laugh at the image and felt much better about the fact that we sometimes lose our cool when our kids keep at us like the constant, irksome drumming on a forehead.

one world

Calvin's epilepsy—the suffering it causes, the challenges it creates, the sorrow it provokes—often gives me pause to consider bigger things, incites me to contemplate life and all of its complexities from different perspectives. Sometimes I peer from the inside looking out, at others I gaze from the outside looking in. And always, with regard to the world—the universe—I am forever humbled.

Alex Churney, A Milky Way Shadow at Loch Ard Gorge

How vast those Orbs must be, and how inconsiderable this Earth, the Theatre upon which all our mighty Designs, all our Navigations, and all our Wars are transacted, is when compared to them. A very fit consideration, and matter of Reflection, for those Kings and Princes who sacrifice the Lives of so many People, only to flatter their Ambition in being Masters of some pitiful corner of this small Spot.

—Christiaan Huygens, The Immense Distance Between the Sun and the Planets, 1698

Associated Press

When you're finally up at the moon looking back on earth, all those differences and nationalistic traits are pretty well going to blend, and you're going to get a concept that maybe this really is one world and why the hell can't we learn to live together like decent people.

—Frank Borman, Apollo 8, December 1968

The world looks marvelous from up here, so peaceful, so wonderful and so fragile. Everybody, all of us down there, not only in Israel, have to keep it clean and good.

—Israeli Air Force Col. Ilan Ramon, 29 January 2003

friday faves - before dawn

Hiss. Buzz. Crackle. All night long, every night, I listen to the monitor from hell. Got to replace the battery to see if it will stop its loathsome sputter. That monitor is one of those things that we can’t live with and we can’t live without, had been there for us when Calvin had a seizure in bed while we were eating dinner once. We’d found him mangled, partly on his stomach, partly on his back, with his face smashed into his down comforter. Finding him like that made me wonder, if we hadn’t had the monitor, would he have suffocated during that seizure? Would we have gone up to bed that night to have found him dead, like some parents of kids who have epilepsy do, like all parents of kids who have epilepsy dread.

The downside of using the monitor is that I get very little sleep, waking to every stir, swoosh, sigh, whimper, snort, rustle. This morning, long before dawn, not unlike the previous five mornings—perhaps the previous five years—I awoke to the sound of my boy smacking and rubbing his forehead, likely due to a headache either from his new anticonvulsant drug, his ear infection, or both. So I repositioned him and covered him for what felt like the millionth time, and gave him a Tylenol and a sip from his bottle. Within forty-five minutes he was asleep.

In sheer exhaustion and exasperation I crawled back into bed angry at the world. Through the windows I watched the familiar, black pines swaying gracefully in the wind, heard the chimes' melancholy tune, thought about Orion and the man on the moon hanging silently somewhere in the sky over our house and felt sorry for myself. And then, my mind wandered to another family who might be sleeping under Orion's gaze, whose father wrote to me last fall about his son who, at the time, was hospitalized for a risky, medically induced coma to try and stop his seizing:

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

Then I realized how so many of us have it hard, some more than others, and I stopped feeling sorry for myself, wanted the hurt of others to go away.

Calvin slept soundly the rest of the night and didn’t wake until six. I rolled out of bed feeling somewhat rested and thankful that we weren’t in a hospital, thankful that the night’s anxious, hopeless, melancholy dissolved some with the dawn. And reaching over to turn off the hissing monitor I heard my child’s sweet eager coos calling for his mama, even amongst all the hissing and crackle—and I felt grateful.

In honor of epilepsy awareness month, please share Calvin's story and help bring us one step closer to a cure. It's as easy as pushing a button. 

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

Originally published 11.20.11.

photo by Michael Kolster

coffee with mike

When I found out I was pregnant I quit my job. I wanted everything to go right, to be perfect, and working that job six—sometimes seven—days a week for months on end was not only stressful and demanding, it was thankless.

After resigning I spent each day swimming a mile at the college pool down the street, strolling wooded paths with our dog Jack, reading books and practicing my hypnobirthing script. Often, I’d make the scenic drive south to meet up with my friend and former co-worker, Mike, for coffee.

When Mike and I first met it didn’t take long to feel as though we were kindred spirits. Neither one of us truly fit into that particular corporate mold—me in my Frye boots and vintage clothes, Mike with his crisp pink shirts, longish wavy hair and southern drawl, not to mention our kooky natures. We stuck out in a sea of bland khakis, plaid button-downs, twinsets and driving mocks.

Over coffee we’d shoot the shit, laugh and he’d catch me up on friends and crises at work, but we’d focus on family, on his two beautiful children and on my growing belly. There was something soothing and reassuring about his smooth accent and the glint in his eyes. Ours was a platonic relationship steeped in fondness for the person we saw seated opposite us sipping a latte.

Eight weeks before my due date my husband and I got dreadful news during a sonogram: the lateral ventricles in our baby’s brain were enlarged. We traveled to Boston for some exhausting, extensive testing after which the pediatric neurologists recommended we deliver our son five weeks early, by cesarean, to prevent any further brain damage, but not so early as to risk respiratory problems. Utterly despondent, we were sent home to rest up a for couple of weeks before the scheduled delivery.

A few days after our return from Boston I met with Mike for coffee. I could tell by the look on his face when he saw mine that he knew something was terribly wrong. Tears stung my eyes and spilled into the corners of my mouth as I told him the harrowing news about my baby. He reached across the table and held my hand. The coffee shop spun with eager addicts waiting in line to get their fix, others buzzing around small tables talking shop. I remember thinking that the familiar faces sitting behind us probably suspected an illicit affair between Mike and I. Neither of us cared. We held hands for what seemed like a part of forever, his firm grasp saving me from careening over the edge of grief in that black moment, kept me grounded and safe. Mike listened with an intensity in his eyes worthy of the brother that he had become. I felt empathy move through his fingers, saw it well up in his eyes. He told me that he loved me and, with a quiver in my throat, I returned the sentiment. In that moment, we grieved my loss together and forgot about all the rest which, in the scheme of things, didn't really matter.

photo by Michael Kolster

questions

I roamed the house in pitch-blackness, my eyes popped out like saucers thinking I might see my way around better that way. The power had gone off, and with it seemed to go all sound, save the drone of a neighbor’s generator.

I padded my way to Calvin’s room where I keep a mini flashlight atop his dresser for nightly use repositioning him in bed. I looked in through the netted canopy, saw him jack-knifed and uncovered, fast asleep. As I snuck downstairs to fish out matches and a lantern I thought about the tens of thousands of people stranded in the dark—for weeks now—in the wake of Hurricane Sandy. They don’t have heat they don’t have light they don’t have refrigeration they don’t have hot water and they don’t have computer access. I thought about the kids like Calvin and their parents, the elderly and the infirm who are living in cold, dark, damp, moldy, insecure homes, if they are lucky enough to still have a home at all.

I had spoken with the neurologist’s nurse at length earlier in the day. I had a lot of questions for her, some that I voiced, others that simply rattle around in my head on a continual basis:

Why is Calvin having so many seizures again? Was Saturday’s seizure because we reduced his Banzel? Are there withdrawal side effects? Was it a withdrawal seizure? Will he keep having more? Will the seizures level out after his body adjusts to the lower dose? Can we go up on his Keppra or his Clobazam? What about trying Vimpat? Will his appetite improve? Will his balance improve? Will his behavior improve? What kind of seizure was it ... it was so different ... so long. Should we have used the rectal Valium?

These are vexing questions that are etched into my mind, ones that I’ve asked before about other seizures, other drugs, and ones I’ll be asking again. But as I set the lantern on Calvin’s dresser, reached in and covered him up, I felt his warm skin and thought about the shivering masses in New York and New Jersey then asked myself, why are we so lucky? And as I crawled into bed I was thankful for all that we have, and certain that the power would come back on soon, before it got too chilly.

Associated Press

how small you are

Sometimes you have to go up really high to see how small you are.

—Felix Baumgartner 

eleventh night

his face
pale like the moon

on a cold silent night

or the red planet Mars

bled of all that is bright
a great sea of fog

washes over his brain
a thunderous storm

or some poisonous stain
like moon tides it rises 

from miles away
I pen in my journal 

that it’s on its way

he fixes his eyes

on some strange apparition
his auras must be 

like a sick premonition
my boy arcs like a dancer

frozen in space
I call out his name

cup my hands to his face
we beckon him back

from this night’s black abyss
put our lips to his neck

and give him a kiss

he is lost to this world

in some transient state

for this war on my boy

I feel nothing but hate
he stares like a doll

his eyes made of glass
for a moment we doubt

if the seizure will pass
as hot lightening bolts
run amok in his head
 I imagine my boy

looking so when he’s dead

as the minutes tick by

he remains in a daze
I sink like a rock

in a blackish malaise
again I call out

to my raggedy doll

and he tries to get up

from his nightmarish fall
his skin starts to flush

like a gossamer lace

now a thumb to his mouth

the moon in
his face

In honor of International Epilepsy Awareness Month please share this story.

the fit

Fyodor Dostoevsky suffered from epilepsy. In his novel, The Idiot, he talks in the third person about how auras—the period preceding seizures—were of "the highest form of existence" and "the acme of harmony and beauty." He writes:

He remembered that he always had one minute just before the epileptic fit when suddenly in the midst of sadness, spiritual darkness and oppression, there seemed at moments a flash of light in his brain, and with extraordinary impetus all his vital forces suddenly began working at their highest tension. The sense of life, the consciousness of self,  were multiplied ten times at these moments which passed like a flash of lightning. His mind and heart were flooded with extraordinary light... But these moments, these flashes, were only the prelude of that final second in which the fit began.

He goes on to say:

At the very last conscious moment before the fit began, he had time to say to himself clearly and consciously, "Yes, for this moment one might give one's whole life!"

If only, in the face of most reliable and continued seizures, I could know that it was so for my son Calvin. 

Fyodor Dostoevsky (1821 - 1881)

losing my mother

I’m losing my mother by bits and pieces, like grains of sand slipping through my fingers. Her brain seems just as they describe it, like Swiss cheese, although I think of it more as cheesecloth, all cobwebby and frail.

We speak on the phone every couple few days. By her tone I can tell she knows it’s me, at least at first. In most conversations of late she asks me where I am, how long I’ll be here and when I am coming to visit. We do-si-do around these topics for ten minutes or so as I sprinkle in some questions of my own.

“How are your knees?” I ask.
“Oh, they're pretty ... easy,” she replies, and by that I understand they aren’t hurting her too much.
“What’s the weather like today, Mom?”
“Not so good, stuff is coming all over and it’s ... heavy,” she explains, and I confirm that she means it’s rainy and grey.
“Yes! That’s exactly!” She adds.

Mom turned eighty-three on Election Day and I asked her how it felt to be that old.

“That can’t be!” she exclaimed.
“So, how old do you feel, Mom?”
“Well, I hadn’t really thought about it.”
“Fifty?” I asked.
“No, not quite.”
“Sixty?”
“I think you’re about right.”

That day was a good one for her. She seemed more lucid, sharp.

“Mom, you’re great,” I continued.
“Well, thank you veddy, veddy much,” she spouted in her usual upbeat way, “but you’re the great one.”
“You know why I’m great, Mom?”
“Because you’re my daughter,” she answered plainly, and I knew she was on her game.

Today’s conversation wasn’t so good, though at least she was happy-go-lucky. I told her about Calvin and she asked when she’d get to meet him, forgetting that she’d met him before. I mentioned the difficulty in traveling with Calvin and she wondered why. “Well, Mom, because he can't talk and he can't walk by himself and he's still in diapers, so it makes travel hard,” and I went on to explain about his seizures and the drugs. “I'm so sorry,” she said in a sad tone, “will he ever ... grow up?” I told her I wasn't sure but that I didn't think so.

“When are you coming to visit?” she asked for the third time.
“I’ll try to get out there in the springtime, Mom.”
“OHHHH! That would be super-duper! I better write that down somewhere so that I remember,” she added, concentrating.
“I’ll remember for you, Mom, you don’t have to worry about a thing.”
“Oh, all right, if you say so,” she piped.

Then she asked me again when I’d be visiting.

friday faves - live another life

To see my little boy suffer relentless seizures year after year and endure heinous drug side effects—all of which make him slip further and further from his potential—while knowing that so much more can be done in search of a cure, pains me to no end. It doesn't have to be this way if more people would simply choose not to avert their eyes, but instead to get off the sidelines, as so many have done for other causes, and use their power to incite change, promote understanding and spark compassion all in hope of finding a cure for epilepsy, which kills more American’s every year than breast cancer, including our children.

I often wonder if some people stand motionless because they think they don’t know anyone who has epilepsy or are somehow embarrassed by it. But the truth is that we all know someone who hurts from epilepsy, though so many hide it, which is one reason it doesn’t get the attention that it deserves. I aim to change that, but I can’t do it alone. If everyone could just step out of their own worlds for a moment and slip into someone else's shoes who has a loved one with epilepsy—live another life for a moment—perhaps they could find empathy.

Epilepsy is a misunderstood, underestimated, grossly under-funded, stigmatized and neglected disorder. In honor of epilepsy awareness month, I invite you to step into our shoes and encourage others to do the same by sharing Calvin’s story. Help bring us one step closer to a cure. It’s as easy as pushing a button.

Originally published 11.27.11.

In honor of international epilepsy awareness please share.
Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

such a good mom

I thought to myself

I’d be such a good mom to a normal kid

Like the two I babysat as a teen

How I loved them so

The girl with freckles and sparkling eyes

The towheaded boy with long lashes and dimples

I think they loved me

Those two old souls

And I had enough for them both

Even though they weren’t mine


I said to myself

I’d be such a good mom to a normal kid
 
Remembering my coaching years
 

Adoring children huddled at my feet

On the warm pool deck

One or two sitting on my knee

Gazing out over blue water and churning limbs

Others braiding my hair with little hands

What extraordinary, ordinary kids

Enough love for the lot

Even though they weren’t mine


I cried to myself

I’d be such a good mom to a normal kid

Peppering bedtime stories with silly sounds

Riding bikes down the street side by side

Wind and sun in our faces

Dancing in circles to crazy happy music

Teaching him all about this beautiful universe
 
And that he should hold fast to his dreams
 
—never let them go—

Even though they might not be mine.

photo by Michael Kolster

allie's story

Written by Becky Daniel, Allie's mom

My daughter Alexandra—Allie—now seventeen, had her first grand mal seizure when she was nine years old. We had embarked on a family trip driving up to Prince Edward Island through Maine. Allie was sitting in the back seat next to her two older sisters watching a DVD movie. Feeling drowsy, Allie nodded off. It was around 6:30 in the morning and we’d been on the road for over an hour. Suddenly, her sister Hanna, who was seated in the middle, felt Allie trembling. Allie began struggling for air and her eyes rolled back into her head. Hanna started screaming, crying and yelling Allie's name. My husband and I were jolted by the noises coming from the back seat. Immediately, he pulled off to the side of the road and ran over to open Allie's car door to see what the hell was happening to her. I was in shock, having never seen a seizure before, frightened that my daughter must be dying for some unknown reason that I couldn't imagine. We laid her out on the ground watching her arms and feet flail. She appeared to be choking on her tongue and she was drooling. Her eyes were blinking over and over and rolling back into her head. Crying and scared, I was holding her and talking to her, trying to let her know that I was there, that it was going to be fine, though not really understanding what was happening to her at all. My husband cradled her head so she wouldn't keep banging it on the ground. Hanna, still in shock, sat in the back seat crying while my oldest, courageous daughter, Aimee, grabbed the cell phone and called 911.

Thankfully, a nurse on her way to work at the Calais hospital noticed all of us huddled on the embankment. She pulled her car up behind us and offered to help. What seemed like a lifetime was really about a three to four minute seizure. We scooped Allie’s limp, lethargic body back into the car and follow the nurse to the hospital.

In the emergency room, after hooking her up to a heart monitor, giving her an IV and observing her while she woke up, they concluded that she’d had a grand mal seizure. They sent us out with a prescription for Trileptol and a recommendation to see a neurologist for continued testing in hopes of learning why this happened to our daughter.

We cancelled our vacation plans, packed our family back into the car, turned it around, and switched seats sending Aimee to the front while I cradled my exhausted, lethargic daughter in the back seat and consoled Hanna, who was still worried about her little sister.

Once home we watched Allie continue to have fifteen to thirty partial seizures a day for which she tried many, many drug combinations. She was admitted to Maine Medical Center and traveled by ambulance to Boston Children's Hospital for a long-term electroencephalogram (EEG), PET Scan, and several other tests. After almost two weeks of tests trying to answer why Allie suffered so many seizures so quickly, we got no definite answers. We came home with a drug combination that helped to control most of her seizures.

After living with this for several years Allie had another set of breakthrough seizure clusters and had to be readmitted to Boston Children's Hospital for more long term monitoring, again with no answers. Allie's doctor then asked her to try an experimental MEG test for additional answers. Again, we could not find any root cause for Allie's seizures, and this is where we find ourselves today.

Allie’s seizure's now are mostly controlled by a drug combination of Depakote, Lamictal and Vimpat, and we feel very lucky that she hasn't had a breakthrough, grand mal seizure since 2010. Although she continues to have focal seizures a few times a week, her meds seem to be working fairly well.

Please share this story in honor of international epilepsy awareness month.
Give to cure epilepsy: http://www.calivnscure.com

Lovely Allie

beauty and terror

Let everything happen to you. Beauty and terror. Just keep going. No feeling is final.
 

— Rainer Maria Rilke

photo by Michael Kolster

the wisdom i see in leaves of grass

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

Read the entire preface here.

photo by Michael Kolster

this little enigma of mine

Every weekend feels much like the previous one, like in that movie Groundhog Day, only things don’t seem to get better, we don’t learn what we can do differently to improve our lives or figure out this little enigma of ours that we call Calvin. For years it’s been the same old same old monotonous weekends during which the most exciting thing we do is to get lattes at the coffee shop up the road and go for a scenic drive. Calvin is nearly impossible to take anywhere without running into his stubborn refusal to walk where we want to take him.

“Let’s do something fun this weekend,” Michael says to me over scrambled eggs and toasted bagels.
“Like what?” I reply, sipping my lukewarm coffee.
“I don’t know.” He adds.
“I don’t know either,” I say, resigned, noting Calvin’s crazy behavior that makes already difficult outings even harder.

Calvin had enough energy this morning to power a rocket to the moon or, in my case, send me to hell and back. What I mean to say is that he was beyond hyper, like some three-and-a-half foot crack addict. His manic behavior has continued throughout the morning and into the afternoon, with bouts of hysterical laughing, coughing and hyperventilation followed by odd space-outs and catatonic staring at his hands.

I wonder if my son is becoming schizophrenic, wonder too if he is haunted by his behavior as much as I am. I feel a seizure coming on even though it is only day five since his last one, only 1/16th as long as he went between seizures in late summer.

He’s in his johnny-jump-up right now, spinning, laughing, screeching and cracked like a nut. He’s getting stronger, he’s getting bigger and I am beginning to wonder how I am going to manage this kid in a few more years, after a he puts on a few more pounds and few more inches. As it is right now, when he is in what I think might be distress, he yanks my hair so hard he twists my head. Sometimes he grabs my throat and I fear he’ll choke me. He clutches my head and drags his teeth hard and painful across my face, though so far I have escaped serious injury. I figure he’s just trying to tell me something—perhaps that he feels a seizure coming on—but, alas, there is nothing that I can do beyond trying to remain calm, which much of the time I find difficult to say the least. That's when Michael comes to the rescue like some superhero.

The kid is a tangled mess of nerves, a puzzle missing most of its pieces, a little brain and body awash in seizures and drugs. Calvin: my humpty dumpty kid. All I wish for is to be able to put him back together again, this little enigma of mine.

readers rock my world

If Calvin could somehow choose anyone in the world to be his mom, there is no one else on the face of this entire blue marble that would be a better nurse, a more conscientious caregiver, a more fierce and committed advocate, or simply a more profoundly loving and patient mom than the one he has tonight. And I honestly think he knows that. You should probably also know that doing what you do also helps some of the rest of us find something a little better inside ourselves. So thanks.

—Jim

My husband and I just spent the morning at my daughter's neurologist's office trying to find out why there seems to be only three states of being for my girl: having seizures, bat-shit crazy because of the meds, or a zombie because of the meds. I hate them all. I miss my pre-epilepsy daughter. And I'm sick of it. I wish you and I had other options.

—Lisa

Wish I were there to bring up inappropriate topics at the dinner table and make you laugh ... for just a minute or two. Thinking of you here in SF.

—John

Listening and holding you close at heart ... your honesty, raw emotion and COURAGE blow me away. Wishing you moments of peace and grace.

—Sel

Oh, dear. Time to stop lurking and 'fess up—I am listening too, from Zurich. I am the mom of three n/t (neurotypical) kids and here I am, fascinated, terrified, moved, by what you write. My kids see me reading and I explain to them why and what I am reading ... so we are all listening.

—Danielle

Even though you may feel alone, you are not. I get it. I understand your words. I am here for you any time, any day.
 

—Karen

I'm listening from far away and feeling. ciao

—Federica

love you dearly. I am grateful for the richness and depth you have given me.

—KIM

I had a friend who [had uncontrolled epilepsy] so I have great empathy. She "looked" normal, so she had to deal not only with the idea she was "disabled" and gave up a lot of her dreams (she'd been accepted to John Hopkins to study nursing, her lifelong dream, couldn't drive because of the nature of her disease's presentation, she couldn't hold a job) but also had to deal with people who questioned her disability (until they saw her seize.) Education helps everyone and you are one of the educators.

—Agy 

I awoke at 2 am in a terrible nightmare so I went upstairs to snuggle in Cole's bed. I still could not fall asleep so I pulled out my phone and read some of your older posts. Well, I was finally able to fall asleep and I had the sweetest dream about Calvin, in my dream he was happy and snugly and was trying to tell us that he was happy. It was so dear and I didn't want to wake up so I continued hitting the snooze button on my phone. I told the boys about my dream because they ask me regularly how Conor's friend Calvin is doing. it is very sweet. We lift you all up in prayer every single day, Cole loves to pray specifically for Calvin when he goes to bed. He couples Calvin and Conor in the same prayer, that they would both be able to walk and one day talk and just be happy with no struggles.

—Emi

Thank you to all of my readers. You give me strength and help to make my world go round.