anniversary

Tomorrow marks the second anniversary of my first blog post. In the last two years scores of wonderful people have joined in helping to fuel my journey, recharge my battery and validate my innermost feelings about what it is to raise a disabled child who suffers from intractable epilepsy. Those wonderful people are you:

all kinds of doctors, mothers, fathers, restaurateurs, therapists, ice cream scoopers, bloggers, children, in-laws, sales reps, grocery store staff, photographers, chefs, brothers, teachers, flight attendants, city councilmen, dietitians, receptionists, kindred spirits, painters, octogenarians, presidents, ed-techs, bar tenders, cooks, bus drivers, case workers, caregivers, supervisors, radio talk show hosts, nurses, chaplains, lawyers, actors, neuro-ophthalmologists, nurse practitioners, deans, physical therapists, grandmas, grandpas, farmers, farmhands, coaches, professors and their wives and kids, nieces, nephews, priests, college friends and their spouses, athletes, bowl-turners, aunts, uncles, cousins, principles, headmasters, musicians, retirees, servers, brewers, hair stylists, authors, founders, weeders, orthotists, superintendents, directors, students, ex-students, curators, sisters, poets, producers, carpenters, baristas, CNAs, actresses, technicians, former coworkers, contractors, designers, business owners, candidates, librarians, congresswomen, critics, high school buddies, neighbors, longtime friends of the family, occupational therapists, speech and language pathologists, pharmacists and their staff, hospital staff, phlebotomists, neurobiologists, film makers, celebrities, readers and kind strangers.

Thank you for reading and sharing and connecting and caring. You’ve all made a distinct difference in our lives and for that I am most grateful.

forty-nine

Despite the fact that eight years of raising Calvin has likely shaved a few years off of my life, in my mind, spirit and most parts of my body I still feel thirty-nine. But I woke up this morning entering my 50th year of life. And though my birthday starts with a head cold, a slightly sore shoulder and a middle a bit chubbier than at thirty-nine (but eating Frosty's donuts for breakfast anyway) from my perspective life still looks decently rosy.

That fact is a testament that we, as the refined humans we have evolved to be, are as resilient as shit, most of us able to handle the nasty curve-balls hurled our way at different times in our life. I'm not one to believe in the words I sometimes see and hear people quote, that God doesn't give us anything we can't handle, because if that were true why would some unfortunate souls off themselves? I am one to believe, however, that we can benefit from bad things that happen to us. We can find the generous pluses, for instance, amidst the scores of miserable minuses that a disabled child brings in the form of guilt, despair, anger, resentment, heartache, suffering, pain, sorrow, hopelessness, envy, frustration, doubt. My Calvin has brought me joy, love, patience, empathy and the rare chance to witness a life that, if it weren't for his physical pain, is as close to nirvana as any human might hope to get.

I have learned from Calvin how trivial material desires can be, how petty some quarrels are, and I am getting better at understanding how little it matters that he can't play on the Little League team, can't speak two languages, can't excel in math and science, can't work a computer, can't even trick-or-treat. Daily, I hear stories of children—and parents of those children—who deal with seizures or hunger or abuse far more heinous than Calvin's circumstance. And I think how grateful I am that Calvin is simply warm and dry and safe and happy and living with a forever-evolving forty-nine year old mom who feels ten years younger and is ready to take on the world, if not for herself, then for her son.

photo by Michael Kolster

friday faves - status

During the first year and a half after Calvin’s epilepsy diagnosis we found ourselves—miserably—in the hospital at least a dozen times. I’d call the ambulance, they’d rush him to the emergency room of our local hospital, and he’d be transferred via a special pediatric transport team to the Maine Medical Center in Portland, thirty minutes from our home. There he’d be admitted to the pediatric intensive care unit (PICU) where we’d stay for up to three days. All this because of something called status epilepticus.

Status, for short, is a serious, life-threatening prolonged seizure, or series of seizures. In Calvin’s case, he’d have eight to ten seizures in a row. Every forty-five minutes he’d wake to a seizure then fall back to sleep only for it to happen again and again. After that many seizures he’d go into a tonic-clonic (grand mal) convulsive seizure that would last twenty minutes or more. Once he had a forty-five minute seizure that we feared would take his life. I was literally kissing him good-bye when he finally came out of it.

The longer a seizure goes the harder it is to stop and it will eventually cause brain damage and failure of the vital organs. It’s as simple—and devastating—as that.

On a repeated stay in the PICU I recall a doctor about our age, perhaps a few years older, whom I’d seen there on previous occasions. He wasn’t too tall, had longish, curly hair that was stylishly messy and a handsome layer of facial stubble. He looked like the kind of doc you see on those prime-time hospital television series. The doc loitered around the PICU wearing jeans, a plaid shirt and a fleece vest, then rolled open the glass door to Calvin’s room and stepped in. “I’d like to have a talk with the two of you,” he said in a southern accent, like Matthew McConaughey, who he kind of resembled. “Have a seat,” he continued. “I prefer to stand,” I replied. He insisted I sit. I didn’t, because there was a hint of condescension in that smooth southern drawl and I wasn't going to let him look down on me, too. I was his equal and he needed to know that.

For at least fifteen minutes he passive aggressively lectured us on how we needed to relax about these seizures so we could find a way not to end up in the PICU so often. As he feigned true concern I listened to his mellow rant and then asked, “Do you have kids?” He told us of two, an eight year old and a six year old. “Do they have intractable epilepsy or some other serious illness?” I asked. “No,” he replied blandly. I continued, “then you can’t really know what it’s like, can you? Even though you probably see a lot of kids in here suffer from seizures, perhaps even die, you can never really feel the anxiety and/or smell the fear of death from one of these bad ones.” I had his attention so I went on, “We’d love not to be here, but Calvin keeps having status, and as long as he does, we’re coming. Now we’d like some privacy, thank you.”

Regrettably, in the following months we landed in the PICU several more times and though we got glimpses of that same doc, he never approached us again. That was just fine by me.

It has been over four years since Calvin has been admitted to the hospital for seizures. We hope to never find ourselves there again, though until his seizures are controlled, the risk, the uncertainty and the fear, will never go away.

Originally posted 10.11.12

Please share.

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

photo by Michael Kolster

off to boston

Alas, another drive to Boston. We take the dreaded trip five times a year, once to see Calvin’s neuro-ophthalmologist and quarterly to see his neurologist.

Today, as usual, we woke up early and rushed to do it all. Sometimes we have enough time to feed Calvin at home, but if the appointment is early we give him his breakfast and medications on the road. But before we leave we rush to drink our coffee, eat our cereal, take showers—or not—brush our teeth, brush Calvin’s teeth, change his diaper, get dressed, get Calvin dressed, pack his medications and lunch, plus a spoon, bib, washcloth, toothbrush, toothpaste, several kerchiefs, extra diapers, an extra set of clothing—in case he soils what he is wearing—thermometer, acetaminophen suppositories, a toy or two, a book or two, his peanut snack and plenty of water.

Michael loads the stroller into the back of the car and makes another batch of hot coffee for the thermos. I strap Calvin in, we say goodbye to Rudy the dog, and we’re off. At some point during the trip, most reliably the first part, Calvin screams his head off. Michael and I can’t hear the radio or have a conversation—his shrieks are so loud. I feel my blood start to boil and I think I am going to pop. Eventually, though, Calvin works up a burp or two and he’s usually quieter after that.

We dart and weave through traffic on the rutted roads. Folks rubberneck at us as we sail down the highway. Inevitably, I see one or two people, their fingers dangling out open windows, nonchalantly release their cigarette butts into the wind. I’ve seen people text, put on mascara, read the paper, read books and rummage through bags on the floor of their passenger seat. Michael drives on cruise control maintaining an even 70 miles per hour, however, the rest of the world doesn’t, so he must irksomely swerve and break for merging cars and slowpokes in the fast lane.

The journey on the Maine highway is mostly beautiful, save for the infinite stretches of cracked, seamed, striped pavement. There are no billboards, only a few guardrails, traffic signs and mile-markers between the cars and banks of lush rolling green, impressive bluffs of beautiful ragged granite, stately pines, firs, spruce, oak, and mountain ash.

Now, the ferns are dying, their orange feathered stems massed beyond the shoulder. Tall thin stalks of rotted cattails spring up from soggy troughs. A couple of times I’ve spotted a moose grazing in the shadows at the forest’s edge in winter. In fall, it’s miles and miles of deep emeralds, acid yellows, gnarly silver trunks, slender peeling white birch and clumps of copper pine needles and rose colored sugar maples.

Once we make it through the thin strip of New Hampshire into Massachusetts the scene begins to change, and by the time we hit Route 1 we are bombarded with billboards, cyclone fences, rows of fast food stops and dense, speeding, erratic traffic. The scene is grey, grim, almost shocking.

And then, after two hours in the doctor’s office meeting with her and her dietician and drawing Calvin's blood, we turn right round and do it again, only backwards. But the goal now is home, and with that in mind it’s somehow more bearable—even exciting.

photo by Michael Kolster

overdrive

Recently, after my blog post barking seals, an acquaintance shared her poignant thoughts in an email to me describing her life changing experience having lived with a sister who has epilepsy:

People always tell me that everything will be better someday, or say that they will pray for my sister, expecting it to make me feel better. It doesn't. I used to find comfort in others kind words, but now they feel like empty gestures that people say because they don't truly know how to react or what to say. I don't live near barking seals but every time I hear a loud noise—door slam, book drop on the floor, someone walking with slightly heavy steps on the floor above me—my heart goes into overdrive and the adrenaline pumps through my veins. I no longer live with my sister and parents, and my brain knows that when she is not around, the loud noises are not signs of her falling down the stairs during a seizure. But my body has not made that distinction yet, and still goes into panic mode. It's something that only people with loved ones who have seizures would understand. Even my fiancee, who has been with me every step of the way since my sister's first seizure, doesn't get it. I ask him to walk more gently, don't slam doors ... and he just thinks I am crazy.

Please share.

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

photo by Michael Kolster

her eyes

Although it doesn’t feel right to my body, dawn is here. Plate glass windows and the annoying din of airport announcements shatter the calm light that filters through low, New Jersey clouds.

Last night I left my mother, kissed her tissue-paper cheek and rubbed her white, mink-like hair atop a head that seems impossibly large for her frail body. She’s thinner than I’ve ever seen her—too thin, I think—eating bird-like portions throughout the day and never feeling fully satisfied, stuck in the craw of a hungry mind obsessed with food. She incessantly fiddles and fumbles with cuffs and collars, napkins and newspapers, scratches sores into her face in the absence of the latex and cotton gloves she must wear around the clock to prevent the self-inflicted wounds. Her pretty eyes are that of an ancient soul: milky and weeping, set into thin, red, chapped skin the texture of bark or beef jerky.

I didn’t say goodbye, just goodnight, but I felt she knew I was leaving, her eyes that of a worried child staring out from a drawn face. These trips kill me: so great to see her, yet heartbreaking to note her decline, torturous to let go not knowing if I’ll ever see her again.

Yesterday, my sister took me boogie boarding off Coronado Island. I’d never tried it before and it agreed with me—a rekindling with my beloved Pacific since having left it for the first time eleven years ago. A few years back, when Mom was eighty, Caron had waded into the same sea holding Mom's hand, put her on a board of her own and shoved her onto the crest of a wave. This year Mom stood tentatively—trembling slightly—in a few inches of surf propped up by two daughters, her arthritic knock knees touching in an unnatural way painful to watch.

I wonder if this might’ve been the last time I’d walk Mom on the beach, or down the block stopping to look at the neighborhood’s flowering shrubs and gnarled trees perhaps as old as she. Would it be the last time I’d tuck her into bed, sit with my arms around her or hold her frail hand and look into her loving eyes?

Now, the sky is a bright blanket of clouds and the gate is full of strangers plugged into their electronics, napping on each other’s shoulders, eating breakfast sandwiches with sodas and slurping down designer coffees. I’m tired and eager to see my boys: Calvin, Michael, and Rudy. Mom is home asleep between purple sheets under a purple cover inside the purple walls of her room. And when she wakes up I won’t be there to hug her, but hopefully she won’t remember enough to spark sadness in her eyes.

under blue skies and palms

At coffee yesterday, under the shade of a street-side porch, my sister-in-law asked me if Calvin had any words. “No,” I told her, then went on to explain how he’d said “mama” once when he was eighteen months old. I mentioned how Calvin’s only obvious sign is for “hug,” but that he vocalizes a lot—cooing and laughing and screeching—which gives me hope that some day he will learn to speak a few words.

Calvin’s ability to gesture for things is practically non-existent, save reaching for his sippy-cup, or banging on the table at times when he is hungry. Once in a while he will shake his head when he doesn’t want any more food. But the gesture for “no” hasn’t translated to other situations, and he has yet to develop a sign or gesture for “yes.”

When I called home yesterday Michael put our expressive boy on the phone with me, holding the receiver to his ear. At hearing my voice Calvin immediately stopped to listen, but then quickly tried to put the phone in his mouth. Sometimes, when I hear Calvin on the phone I realize how very different he sounds—is—from other kids.

At the beach yesterday scads of children dotted the shore. Through squinting eyes I watched them running back and forth from the water, shrieking at big waves rolling past them, tossing clumps of sand and digging holes with little plastic trowels. I tried to delight in the scene but couldn’t. All my days since Calvin’s birth I’ve longed for him to freely scamper around at the beach finding shells, writing words in the sand and chattering excitedly in the wild surf.

And, though it hangs by a thread thinner than spider’s silk, I don’t give up on that dream thinking, perhaps one day under blue skies and palms, wading in waves brushing a sandy beach, Calvin will cup his hands and call out, “Mama!”