darkness and silence

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

—Helen Keller 

photo by Michael Kolster

déjà vu

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

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

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

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

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

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

photo by Michael Kolster

that's just life

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

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

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

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

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

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

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

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

what i want

I want to be strong, though often I falter,

to feel glee when I drown in despair.

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

to be kind but my cruelty seeps through.

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

to endure as my running legs collapse.

I want to be patient, not ugly and cross,

to hope when I find myself doubting.

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

to run and jump and thrive.

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

to embrace others, not pass judgment at all.

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

to laugh through eyes cascading in tears.

I want to breathe through the times I feel stifled,

to move forward, only as time stands still.

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

want his seizures to stop but they hammer on through.

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

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

I know what I want, that part is easy,

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

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

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

photo by Michael Kolster

kids

Little kids amaze me. Their minds are so open and pure, innocent and non-judgmental. Of course, I’ve met a few who defy that description, ones who seemed to emerge from the womb as tiny terrors, growing into mischievous trouble-makers, tormenting other kids and pulling dogs’ tails. You can see it on their faces—in their eyes—the desire to provoke. But even those kids are pretty darn cool if I crawl inside their little minds and think back to when I was their age and to what motivated me then.

When Calvin was around three or four and I’d take him to the grocery store, he’d sit in the cart, his skinny legs dangling through the bars with shoes too heavy for them, while he’d coo and giggle and rant. Other children, some barely old enough to sprout words, would point to Calvin and say to their mothers, “look at the baby,” and then, “that baby’s got glasses.” I always found this amusing since Calvin, though two sizes too small for his age, was clearly not a baby, but somehow that’s how they perceived him, and their impression had much merit. Calvin is indeed my big baby.

Sometimes I think, in some screwed up way, I am living some mothers’ dreams: having a child that never grows up. I’ve heard many mothers say as much, that they wish their baby could remain small and cute and cuddly forever, stay an infant. I remember bristling at the idea, thinking, if only they knew what they were saying, that if they lived my reality those words likely wouldn’t be passing over their lips. And I find myself with a child they think they wish they had—a big baby making baby sounds, doing baby things, even in some ways still looking like a chubby-cheeked baby playing with his feet and toes while I change his diaper, even though he is nearly eight years old.

Once every other Tuesday I volunteer read to the kids in Calvin’s mainstream homeroom class. It’s a way to get a shot of little kid normalcy, something I don’t get at home and have always loved. It’s also a way to give back to the community and to do what I do best, which is to instill confidence in all of the children, including the ones who don’t seem the brightest, maybe can’t read well or aren’t self-assured. Recently, one of Calvin’s friends, Summer, sat with me cross-legged on a nubby rug while I read Miss Fiona's Stupendous Pumpkin Pies to her. Every page or two we paused and giggled about the funny illustrations. At one point I asked her, “Have you ever heard of the phrase ‘you can’t judge a book by its cover?’” Summer shook her head as wisps of blond brushed her shoulders. I told her that Fiona the witch, although she wasn’t very pretty—in fact was kind of homely—was beautiful on the inside because she kindly made pies for everyone in the village.

When we closed the book Summer wanted to read a second one, but I told her that I needed to read to another child, to be fair. “Okay,” she said brightly, and skipped off to her desk. On my way out Summer came up to me, “this is for you,” and she handed me a sheet of white paper. I turned it over to see a wonderful pencil drawing of the three of us—me, Calvin and Summer—with two soaring birds and a large sun burning in the sky. I am pictured pushing Calvin in a stroller and Summer is reaching her arms out to us. Calvin appears tiny in his little stroller, like a baby, even though he is at least a year older than her and maybe as tall. “What a nice picture, thank you!”

Summer always manages to steal my heart. Come to think of it, somehow most kids just do.

hospital blues

It’s an eerie, unsettling feeling sitting in a sterile hospital room glowing blue with sonogram equipment and bright screens while listening to the rush of air through hidden ducts wondering what kind of viruses are being pumped from one room into another. Alarmingly, the phone rings, “bloolaloolaloop ... bloolaloolaloop,” and I flinch, a nauseating, anxious feeling melting over me, like some Pavlovian dog stung with a cattle prod whenever a bell rings. And I find myself right back there, almost eight years ago, laying with my tiny, swaddled Calvin under crisp white hospital sheets in a waxy beige room where I don’t want us to be.

Yesterday, in the diagnostic imaging department of our local hospital, Calvin had a sonogram done on his kidneys. The technician squirted clear blue gel, like Dippity-Do, on the end of a warm probe that she held awkwardly, like a kid weilding one of those over-sized crayons, to the side of Calvin’s back as he giggled. Blood work that was taken last Monday in Boston had come back indicating the possible beginnings of problems with his kidneys and liver. Frigging seizure drugs, I thought, messing with my little boy’s delicate organs—yet another anticonvulsant side effect to add to the absurdly long index, a veritable grocery list of ills that I feed to Calvin twice every single day.

Floating in the screen was a blackish, kidney-shaped galaxy sprinkled with little white stars. “That’s echogenisis,” one of the techs said, somewhat unsure of the term, as the blob stretched and morphed like some amoeba under a microscope. In the dim light, Calvin turned onto his side, stuck his thumb in his mouth and fell asleep, his right hand appearing as if he were wearing a scarlet glove. We’ve seen this capillary flushing ever since he started taking the Keppra, wonder if it tingles or hurts but can never be sure since Calvin can’t tell us.

The technicians wrapped up and went to show the radiologist the images, leaving us in relative darkness listening to the electric hum of the gadgets, to the familiar, heavy metallic snapping of wide hospital doors, the muffled voices behind them perhaps talking about our child that they know nothing about.

Calvin and I lived in this hospital’s labor and delivery ward as “boarders” for three-and-a-half weeks after being released from the Maine Medical Center where he’d been for as much time just after his birth. The feeling inside the hospital became both comforting and unnerving, the sense of safety with doctors and nurses at our fingertips in case something went wrong intermingling with the real sense that we were imprisoned, couldn’t take our own child out the exit door without an alarm going off, couldn’t leave as long as he was unable to nurse and begin gaining weight without the aid of a tube. We'd been there so long sometimes I wondered if we’d become rooted to the vinyl bed, like a stick of furniture on cold linoleum that gets mopped around daily without notice.

In the night, every four hours a nurse entered the room, the sliver of light beneath the door becoming a large wedge. She’d check Calvin’s vital signs—his temp, his heart rate, his respiration—then sneak away, the door gliding shut with a solid click-CLACK. I’d wake and lean over the edge of the plastic tub that was Calvin’s crib, put my ear near his face to ensure he was still breathing. At barely five pounds he was so fragile, a shivering pup, not having been ready to enter the world six weeks early. Harsh, bright, cold, heavy world. And then I’d hear the moans and cries of women in childbirth, echoing down the carpeted hallway from who knows where—perhaps the next room over, the room across the hall, hard to tell, the grim sound muffled as if in a watery dream. I wanted out of there, to be in the comfort of my own home, it'd been so long and dreary, save for the happy visits of nurses who'd kept us under their wings as if we were family, of the pediatrician who was our cheerleader giving us hope with each passing hopeless-felt day.

Finally, the door clicked open and the tech told us we could go, that no more kidney images were needed and that we’d get the results in a day or two. I found it impossible to read her, wondered if the news was going to be bad ... again. We’re starting another chapter of this horror story, I thought, while trying to remain positive. Michael woke Calvin who remained drunk in residual sleep while we put his little puffy jacket on. Outside the sun made me squint but warmed my pale face, and we loaded Calvin into the car and spun around the circle drive like it seemed we’d done a thousand times before. I was thankful we were headed for home and as I watched the brick red of the hospital blur and disappear round the bend, so too did my anxiety as Calvin wrapped his arms around my neck and pulled me in close for one more of his slobbery kisses.

a green bough

“If I keep a green bough in my heart, the singing bird will come.” 

—Chinese proverb

photo by Michael Kolster