sometimes angry

Sometimes I am so angry—seething really—at the endless seizures and drugs that I can't even see straight. They are the root cause of sleepless nights, Calvin's poor balance, stupor, hyperactivity, drooling, falling down, my sore shoulders and worry, his blank stares, gross inability, speechlessness, the painful blood draws, weary trips to Boston hospitals, dirty diapers, our lack of freedom and autonomy. Stop the seizures? Then we could eliminate the drugs and the rest might very well vanish into thin air.

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a good mom and a good fixer

My mother was known by my friends as one of the best cooks in our neighborhood. It wasn’t that she excelled in haute cuisine, indeed she overcooked vegetables and knew nothing of pasta al dente, but she warmed the hearts and stomachs of many. My brothers and I would say to her after meals as we were clearing the table, "you're a good mom and a good fixer."

Just the other day I was telling my nephews about her homemade cake donuts, crispy deep-fried then coated in powdered sugar, and about her battered chicken drumsticks. I remember devouring hot polish sausage with russet potatoes, sweet onions and mozzarella baked and bubbling in an oblong glass pan. On the rare occasion Mom broiled a steak. We consumed plenty of casseroles and baked fish of all kinds. She topped salmon with a creamy egg sauce and threw together a pretty mean spaghetti with whole olives and ground pork, served with a plank of buttery garlic bread broiled open-faced. On camping trips Mom breaded and pan-fried the razor clams we harvested and served us mountains of potato salad chalk full of olives, green onions, hard boiled eggs, a ton of mayonnaise and a bit of mustard and pickled relish.

My mom’s breakfasts were my favorite, eggy and rich, sweet and savory. On her broad skillet she flipped all types of pancakes: buckwheat, thin Swedish, dollar-sized, buttermilk, and sourdough. Her oven bore moist German pancakes, bubbly golden Dutch Babies and brown sugar strudel coffee cake. Moist blueberry muffins were my friend Lori's favorite, which we traded her for rides to swim practice, and Mom fried up banana fritters on occasion, too. Almost every weekend breakfast boasted a broiler pan full of juicy sausage links or crispy bacon and a bowl of dad’s homemade cinnamon applesauce. Eggs were our friends—scrambled, fried or soft boiled.

My dad had a sweet tooth that he passed down to most of us so Mom always had at least one dessert going—sometimes two or three: blackberry cobbler, angel food, red velvet and German chocolate cakes, Boston cream pie—my brother Alan's favorite—tollhouse, snickerdoodle and peanut butter cookies, apple, berry, peach and cherry pies, all sporting huge scoops of vanilla ice cream on the side.

In stark contrast, for the past four years, my boy Calvin has remained on a rigid diet which required me to weigh every morsel of a narrow range of mostly fatty foods to the tenth of a gram—equal to about one drop of olive oil. This high-fat diet (with almost no carbs and zero sugar, so not as delicious as it sounds) was aimed at stopping, or curbing, his seizures, but it never made a dent, only turned him into a zombie and stunted his growth, though I've known some kids whose seizures stopped all together because of the diet. So recently we have abandoned the diet. I cannot describe how liberating and fun it is to reintroduce old and new foods to him, albeit cautiously. Perhaps one day Calvin can know the pleasure of a fresh donut or perhaps a spoonful of chocolate chip cookie dough melting warmly in his mouth. It might sound ridiculous, but sharing with Calvin the delights of food would make me very, very happy, like—no doubt—it did for my mom.

Harriette May Shake

school of hard knocks

Yesterday was Calvin’s first day of school. This time, after repeating kindergarten last year, he enters first grade at the public school down the street a spell. A full-sized yellow bus pulls right up to our driveway and Cindie, his beautiful blond bombshell of a bus driver, jumps out, a mane of golden hair bouncing behind her, I give her a hug and she lowers the lift to accommodate his pushchair. Usually, Calvin walks on and off the bus with help, but for the first day, aware that the new staff wouldn’t know how to handle him safely, and so as to avoid some hard knocks, I buckled him into the chair, then donned my helmet and leather jacket and sped off behind them on my motorcycle.

I spent the morning training his new one-on-one, Mary, to help him walk safely using the harness, how to hold it with a bit of slack so he doesn’t lean into it as if fighting against a stiff wind, and how to lead him by holding his hand. I briefed her on his myriad of habits—biting everything, fingering, putting his hands over his ears, yanking off his glasses, staring at the sun. I explained his orthotics, his diaper changes, what his seizures look like, his poor balance and the fact that he doesn’t have depth perception, never having developed 3D vision, so is apt to run into things. And last but not least, while showing her how to feed him and to facilitate his participation in the activity, I educated her, along with the other attentive ed-techs, about the monster that pummels him, which is epilepsy.

As the three of us traipsed around the hallways, Calvin in the lead wearing his blue harness, I was mindful of the fact that he was being gawked at by the other children, like an animal behind a cage or on a leash. I’ve kind of gotten used to it—kind of—having been through the school of hard knocks myself since Calvin was born, but every once in a while I must resist the urge to tell some kid or adult “take a picture, it lasts longer.” I remember last year when another student, probably a third-grader, asked, “why does he wear that leash, is he a dog?” I replied, “no he’s not, are you a pig?” She pleased me with a sour scowl then sulked away.

All in all it was a pretty good first day. Calvin’s one-on-one managed to avoid a few close calls between the windows, cinder block and brick walls and Calvin’s head. I’m nervous, though, because eventually, if this year is anything like the last two years, he’s going to get bumped and bruised and he’s going to go down. I just hope when it happens it’s not too terribly hard. No one needs a lesson like that, especially Calvin, who gets more than his fair share of hard knocks from seizures, drugs and falls.

wake-up

I wake up in the morning, roll out of bed and stub my toe—the bad one that I jammed last summer that still isn’t quite up to snuff. I stumble to the bathroom and catch the door jam with my shoulder, eyes not quite open yet, brain still in neutral. I look in the mirror, and although I am nearly forty-eight years old, I think I see a pimple on the end of my nose, though I’m not quite sure because I can barely see that close anymore without my reading glasses.

I go get Calvin out of the crib, set him on the changing table and undo his diaper. Like a water fountain, an arch of warm liquid gold hoses me down. He almost never does that. Oh well, there are worse things. I help him get dressed and we head down the stairs as he grabs my nose—right where the pimple is—yanks my hair out and pokes my eyes all with utter lovingness. It’s been too long since I’ve clipped his tiny razor sharp fingernails and I feel it, like when I used to teach swimming lessons to frightened little kids digging their nails into my chest.

Downstairs, I plop Calvin into his high chair and pinch my finger in the tray locking mechanism that doesn’t even work anymore so I have to jam a knife into it to make it stay in place. If I’m lucky, making his meal is uneventful. As I feed him and give him his seizure meds, my legs straddling his chair, he extends a foot into my thigh and pins my tender skin between his rubber-soled slipper and the wooden chair. Then he kicks the bowl of fruit out of my hand, the blueberries erupt and scatter on the ground for Rudy to suction up in mere seconds—that is, if I were to let him.

After breakfast is over I brush Calvin’s teeth. He bites the plastic bristled brush like a pit bull then suddenly lets go and a spray of toothpaste splatters into my face. With stinging, bleary eyes I unbuckle him and take him to the bathroom to play with the shutters. I catch a glimpse of myself in the large round mirror. Good thing I don’t take myself too seriously what with my tangled mess of hair—some gray, some missing—and bloodshot (toothpaste shot) eyes. I haven't had nearly enough coffee, I've got blueberry stains and yogurt all over my robe and a big raspberry on the end of my nose that I can see clearly now that the sun has risen and Calvin has made his very best attempt at waking me up.

possibilities

When you have exhausted all possibilities, remember this—you haven’t.

—Thomas Edison

Thomas Edison

fingerpainting

When I was about Calvin’s age I attended Catholic school. Every day I put on a scratchy wool pleated plaid skirt under which I wore cutoffs so I could climb the monkey bars at recess. Matching suspenders went over a white blouse and under a carmine wool sweater and I wore my hair in a pixie, my mother having put Scotch tape across my bangs in hopes of cutting it straight.

My teachers were mostly austere nuns who met us at the door every morning before class. I learned to read and write, do simple math, enjoyed some art and endured religion. I don’t remember any P.E. A couple of times a year, though, we had some sort of health day. We performed sit-ups and pushups, traced large chalk circles and figure eights on blackboards using both hands and ran races in the parking lot. The smallest girl in our class, Barbara Koreski, always won. She was very thin and compact, like an elf, but she was damn fast. I remember always coming in just behind her.

Once, during art, I watched the teacher-nun pace by my desk as we drew animals, which I was excellent at doing. She passed by me and stood above the girl in front. “That’s not how you draw an elephant,” she nagged, “elephants aren’t purple and pink.” Even at the age of seven I knew the nun was full of it. I felt so bad for the girl whose sad frown scowled down at her page as she scribbled over her creation. I wished I could have said something to the nun, corrected her for her narrow-minded, harsh opinion, for squashing a child’s imagination. But I couldn’t.

Another time in art class we fingerpainted. We each got to choose a color, and because I always wanted to be different, I chose yellow when most of the other kids had chosen red, blue or green. Only one other student, the girl next to me, chose yellow, but I made a very special loop de loop in the upper left hand corner so I'd know that it was mine. We pinned them on the wall to dry. All day during class I gazed admiringly at my happy yellow creation. At the end of the day we were handed back our masterpieces but the nun gave me the wrong one. I immediately protested saying that the other yellow one was mine, that there had been a mistake. “It doesn’t matter,” the nun barked, “they’re both yellow.” She walked away as I begged for my painting with the unique squiggle in the corner. The other little girl did nothing. Perhaps she didn’t know, or care, or maybe she wanted mine. After all, I really felt it was better.

Even now, I cringe when I hear an adult tell a kid that they aren’t drawing, coloring, painting or sculpting right. I can’t imagine what the point is. Someday, if the seizures abate and we can take Calvin off of the drugs, I hope that he can learn to grasp a crayon in his hand and make a mark—his very own—and know that he has created something beautiful, something unique—all by himself—and that I am proud.

vicious storm

Yesterday morning I wrote in the journal “day 10.” Calvin has been doing great lately, a good string of days since his last seizure and little to no manic behavior to speak of, save some hyperactivity at meals once in a while which we chalk up to being excited about eating. But we haven’t been able to eke out much more than nine or ten days between seizures in recent months, even with several drug increases. As a result his balance tends to be precarious and I am convinced it is due to the medication.

All day long Calvin refused to walk his usual paths around the perimeter of the house. Instead, he’d collapse, laughing hysterically at our coaxing, then just plop himself on the ground and sit there. So, Michael and I buckled him into the stroller, put Rudy on the leash and took a walk across the college campus to get some ice cream.

First-year students are beginning to arrive for orientation and I watched a handsome young man say goodbye to his sharp dressed parents in front of a stately old brick dormitory. I’ll never do that with Calvin, I thought, and felt the twinge of loss that I probably feel daily for one reason or another.

A few minutes later, ice creams in hand, we parked ourselves on a bench aside the shack as the Blue Angels streaked across the white sky, their deafening thunder enough to make me want to cover my ears. Rudy, unfazed by the racket, sat attentively waiting for the last bit of cone that he knows I usually reserve for his treat. “Is it okay to give Calvin a bit of my yogurt?” Michael asked, “it’s sugar free.” Having recently liberated Calvin from his rigorous, exacting Ketogenic diet, I said, “probably.” Michael spooned in a bit of his mixed berry frozen delight and Calvin laughed, the yogurt dripping out the side of his half open mouth. He seemed to like it, though perhaps his peculiar laugh was more due to a painful ice cream headache, or worse—a looming seizure.

The entire way home Calvin squealed and writhed spasmodically in the stroller, which he hasn’t done much lately. The events of his day caused us to worry that a seizure was brewing, but he got through bath and dinner unscathed, and then led us outside to walk around the house clad in skinny, unmatched pajamas and felt slippers. Michael took the reins while I grabbed my camera. The fading light was beautiful, it was the calm before the storm—Hurricane Irene on its way. As Calvin and Michael circled around the car I picked off a few good shots then noticed smiling Calvin go stone-faced and silent. “Uh-oh,” I said and crouched down to regard his face. He stiffened and pitched back into Michael’s arms, who then carried him like a bundle of sticks, or a board, into the house. By the time we got Calvin to the couch his face was dark and ashen, like the skin of an unpicked blueberry. We caressed his face, Michael kissed his head, while we waited for it to end.

Thankfully, the seizure was shorter and less violent than most, perhaps a sign that the drugs are helping, albeit not well enough. Sure that it was over Michael carried our sweet little disoriented boy upstairs and tucked him into bed, then slung the baby monitor around his head to listen. Outside the rain began to fall and the wind kicked up. Our first hurricane in Maine was about to arrive, perhaps our last, but for Calvin it’s one vicious storm after another.