momisms

I talk with my mom on the phone every few days if I can manage it. She lives in San Diego with my brother Matt and his wife Stacey. She’s eighty-one and has Alzheimer’s and, as far as I can tell, she’s on the slow burn. They say a brain with the disease looks a bit like Swiss cheese. Lately, when speaking with her from three thousand miles away, I am beginning to detect more holes than cheese.

The other day, I asked her something I that always do at some point during each of our conversations, “are you loving life?” In her usual upbeat manner she quips, “I hadn’t thought about it, but it’s a good idea!” I continued, chuckling with her, “Feeling healthy these days?” to which she gave me her favorite response, “yoooobetcha!” I tease her, “you’re doing pretty well for someone who is a hundred and fifty years old.” She laughs in that robust, round way that I know so well. I can imagine her mouth wide and open, her eyes sparkling like they do. “How old am I, really?” I return the question, “How old do you think you are, mom?” She ponders for a moment, “Forty, fifty?” “Nope, you’re eighty-one.” We have this same conversation nearly every time we speak. This time she pipes in, “good deal ... I’m still here!”

Harriette Shake, you’re really somethin’ else. I wish Calvin could know you.

edna and bess

Thursday, on the plane headed to my high school reunion in Seattle I sat next to an elderly couple, Edna and Bob, the both of whom were sporting thick bi-focal glasses, neat slacks and sensible shoes. Edna’s hands reminded me of my mothers, thin skinned and gentle with sculpted arthritic knuckles. Edna and I got to talking and she asked me about family. I told her about Calvin and his various challenges, the fact that he can’t talk, can’t walk by himself, and is still in diapers, even though he is seven. Then I underscored for her his ongoing battle with epilepsy.

She led into a story about a very close friend of hers who lived nearby in their Philadelphia suburb back in the 1950s. Her name was Bess. Bess was married to Bill and they had four boys and a girl all with names starting with the letter B.

Bess and Edna’s boys were in the same third grade class, which is how the two women met. They began frequenting a favorite diner called Robinhood, which served a couple of slices of bacon, two pieces of toast, a pair of eggs and a cup of coffee all for ninety-nine cents. Over their first breakfast Bess said to Edna in a serious tone, “I have something important to tell you that I’m not sure I should. Will you still be my friend if I tell you?” Edna replied, “I don’t know ... lay it on me.” “Well,” Bess whispered, “I have this disease and it’s bad.” Perplexed, Edna asked, “is it leprosy?” “No.” Bess answered. Edna continued, “then I can handle it.” Bess went on with a shrunken posture, “I have epilepsy.” Edna countered in her friendly way, “well, it’s not catching.”

As the conversation progressed Edna asked her friend whether she had grand mal or petit mal seizures, at which Bess’ jaw dropped open in complete astonishment, “you  know this?” Bess explained how usually when telling people, they’d physically back off—pitch a shoulder away—and the friendship would never blossom, leaving Bess mistrustful, ashamed and dejected. But with Edna it was different.

Seated next to me Edna, reaching deep into her memory, told me how they’d find themselves in stitches over some funny thing and they’d laugh until tears streamed down their faces and their jaws ached. “She was my running partner," and then qualifying the statement, "we didn't actually run, but whenever I wanted to go somewhere we’d go together." Then Edna described how at times, in the diner or the car, Bess would stop talking mid sentence, quiver for a minute or so, then pick up her sentence right where she had left off. “Did I just go off into twiggyland?” Edna confirmed and lectured, “did you take your meds?” Bess hadn’t and said she’d take them later. “No you won’t, Edna barked, “you’ll take them now.”

One night Bess’ husband called up. He asked to speak with Edna. He went on to tell her how much it meant to him that she looked after his wife when he was out of town all week long—every week—for work. It eased his mind, he said.

Although Bess moved away a couple of years later the two friends kept in touch over five decades. Bess died knowing that in Edna she had found the truest of friends.

photo by Michael Kolster

berserk

The other night when I was fixing Calvin’s dinner he was completely wacky. If he hadn’t been buckled into his high chair he might have gone flying into the air what with his helicopter arms whirling in circles above his head. The kid was batty, absolutely frigging berserk, and poking the bejeezus out of his eyes. He gets this way more than occasionally now, particularly before a seizure, but this time he was unusually batty.

At dinner he was worse, like a cowboy riding a bucking bronco, that characteristic circular arm motion in the air. I have to loosely secure his other arm with one of his bandannas to do my best to calm him, similar to putting a weighted or compression vest on an autistic child, with whom Calvin has many shared traits. It seems to work, if only a little.

He continued fingering like mad—as bad as I’ve ever seen him—rubbing and snapping his fingertips together with the obsessive-compulsive bent of a raving lunatic. Lately, when he gets like this he’s got what we’ve coined “tight mouth,” his full lips drawn in, almost cinched, into a small circle of tension, his jaw slighted jutted. To be honest, the look on his face, his entire manner, is repulsive to me. I don’t recognize him. It’s like he’s become someone—something—else. What’s more is that I'm not really sure what’s the matter and he can’t tell me, but my hunch is that it's the drugs causing my sweet boy to become a little monster and, if not them, then the seizures or both.

As he was thrashing about his roving hand punched into mine as I reached out to hold it so that I might calm his mad fingering. I heard and felt something pop. He started to laugh, which is why I am pretty sure it hurt—the laughing a recent development, it seems, in response to pain. He laughed himself hysterical, into a frenzy that crecendoed to such a point that I thought he’d go right into a seizure. At one point, after what seemed menacingly like an eternity, I was almost convinced that he wouldn’t stop and I’d end up calling 9-1-1. I’ve never seen him quite so freakish and thus, I became a jittery bundle of nerves.

Eventually his evening dose of drugs beat down whatever chaos was wreaking havoc in his brain. But the night was still young and I waited quietly, on edge, for the dreaded next seizure to pounce.

do for others

What you do for yourself alone dies with you. What you do for others and the world remains immortal.

– Albert Pike 

counting seizures counting drugs

Today is day nine ... nine days since Calvin’s last observed seizure. I can remember times as recent as January when I counted up to seventeen, or years ago when he hit twenty-seven, or even forty-three. I wonder if we’ll ever get back to those days again. I dream of a time when we can stop counting all together.

Last night Calvin was pretty restless, sitting up in his crib several times and falling backwards, his feet pinned under him as he slept on top of the comforter. Each time I went in to reposition him, cover him and offer him water.

At three-thirty I awoke to a tiny squeak not unlike a puppy’s whimper, but I knew it was Calvin. I whipped off the sheets and darted into his room, flicked on the light to find him writhing in his crib, his covers partway off. Michael and I leaned down into the crib and stroked his hair, his peachy skin that shuddered and convulsed beneath our loving touch. We waited and watched—nothing else we could do. The third and final phase of his seizure, when he trembles and jerks, was longer than usual. And when it was all over we shared Calvin’s weight, Michael at his shoulders while I took his hips, levitating him, and then placed him gently into our bed.

For at least half an hour Calvin suffered aftershocks, little shivers and twitches punctuated by the occasional rigid extension of his legs. His belly was distended with gas so I traced smooth circles clockwise on his soft abdomen to try and tease it out. Finally he drifted off to sleep, my hand on his warm chest feeling its lovely rise and fall.

As I slept his fits persisted in my dream. Not long after the first seizure Calvin started into a second one. This time he coughed up blood and cried. In the dream somehow I couldn’t get to him—felt the same kind of sick helplessness that is our reality. No way to save my child from these relentless attacks. No way to kiss it and make it all better. No way of knowing what my boy might have been—might be doing—if it weren’t for these wretched seizures repeatedly scalding my sweet one’s brain.

This morning at breakfast I increased one of Calvin’s seizure meds ... again. He’s pretty much maxed this one out, like so many of the others we’ve tried that have failed him. I’m not really sure how his little developing brain navigates at all what with so many different drugs continuing to soak into it like chloroform in a sponge. I fear we will have to try yet another drug—the ninth one—in the not-too-distant future. The current ones make him hyper. Will the others send him into a lethargic stupor again? And as long as he must take these drugs he’s not really my kid. He becomes some sci-fi horror flick maniac or zombie under the spell of these volatile toxic potions that morph this kid—who used to be mine—into someone who, at times, I’m not certain I can ever really know, but nevertheless love him with every cell of my soft animal body.

photo by Michael Kolster

slingshot

A few weeks ago, while Michael was pruning the part of the burning bush that I can’t reach—not even with a ladder—he noticed a bird’s nest in its tangled outer branches, a cardinal’s nest. The next day while gardening I inconspicuously checked it out. The first time I saw a long feathered tail. Another time she spied me with her beady black eye fixed and motionless on mine, her orange beak gleaming like a safety cone.

We’ve spotted two pairs of cardinals in the yard this year. At dawn on these summer days, between four and four-thirty, we wake to the male cardinals’ clear sliding trill piercing the morning stillness through our wide-open windows. In the evening, when Michael and I eat dinner out in the screen porch we hear the female’s short, sharp chirp before she emerges from the bush and flutters off into the surrounding trees to return later, zooming in making a low arch back into the bush.

On a few of my morning strolls through the dewy garden I’ve seen a fat orange tabby cat lurking at the base of trees. I know it’s out there when I hear the crows work into a frenzy. I hiss it off clapping and wishing I had a slingshot in my back pocket. Its menacing presence has had me worried about the nest.

The other day, after two days of drenching rain, I peeked into the bush only to find the delicate nest capsized, hanging askew and slightly unraveled. I searched the ground beneath it and found a tiny blueish-white egg, no bigger than a grape, adorned with blackish-blue speckles. My brow cinched up into a sorry scowl. As gently as I could I picked up the egg, which was intact, and I held it to my cheek. It was cold. The birds were gone.

Regarding the fragile egg in my cupped palm I thought about my little Calvin. How has he survived—indeed how have we all survived—the nasty curve ball that has been hurled our way sending us into a spin toppling and turning our lives upside-down? Is it about strength? Tenacity? Or is it simply the luck of the draw. Perhaps some combination of all three. In any case I’d like to think we’ve beaten the odds, at least so far.

I already miss those cardinals. I wonder where they’ve gone. I hope they come back next year and have some better luck, beat the odds. But maybe I ought to go out and get me a slingshot.

stairway to heaven

A few days ago Calvin went up the stairs ... all by himself. As I stayed closely behind him in case he fell backwards, he crawled up the first step then stood and grabbed the railing. He stepped up twice to the landing and safely turned the corner ready to head up the flight of eleven stairs to the second floor. Again he crawled up one stair then stood and took two more holding onto the banister. Then he crawled a few more, stepped a couple more then crept the rest of the way to the top. I didn’t lay a hand on him.

We’ve been working on this for months if not years. Words cannot adequately express how incredibly proud I am of his accomplishment. He’s learning new things, faster than ever, and though that isn’t saying much, it still feels good—really, really good. I think it’s because he’s having slightly fewer seizures. I can only begin to imagine what his development might be like if he could get rid of the seizures and stop taking the drugs. I don’t believe in god, at least not in the way the good books tell it, but it'd feel like my own little heaven here on earth if he were free of the seizures and the side effects.