christmas past and present

With Christmas just around the corner I am reminded of the hustle and bustle of the holiday; the long lines, the traffic and the crowds. Years ago I pretty much liberated myself from the stress and expense of Christmas shopping and card giving. Anyway, I’ve always preferred making gifts: cards and quilts, photo books, foods, original poems and stories. And friends and relatives will tell you that I've perfected the fine art of re-gifting.

Maybe I've fallen into these habits from being raised in a frugal family, one in which my father washed plastic wrap and draped it across the dish-drainer to dry and re-use. As the last of six kids, most of my clothes and toys were well-loved hand-me-downs. My favorite toys were my brothers' Hot Wheels, my sister’s ratty-haired troll dolls and a box of worn wooden blocks painted yellow, red, blue and green. I spent hours rummaging through a slouchy cardboard box full of my grandmother’s old clothes playing dress-up and I’d make forts out of woolen blankets draped across sagging couch cushions set on end.

The religious side of Christmas, although I was raised Catholic, was never emphasized by my parents past the ritual of attending mass with my Grandma or in the placing of the nativity scene that my mother unboxed, along with delicate glass balls, felt reindeer, creepy elves and half-melted Santa candles. She and I enjoyed decorating the tree with rain or icicles and the kind of light bulbs that should have set the tree aflame. I remember my parents receiving countless glittered greeting cards and I watched my mother's hand cramp up as she wrote, addressed and licked stamps for seemingly hundreds of her own to post. And every year for Christmas I asked for stuffed animals and salami. I loved salami.

At home now we still receive a handful of holiday greeting cards, and while many are void of any hand written message or signature, we're so glad to be thought of, though our favorites are the ones with personal sentiments (or dirty Santa jokes.)

Our son Calvin, by nature, is oblivious to Christmas, Santa Claus and presents. He wants for nothing more than to hang out at home with his mama and daddy, playing happily in his johnny-jump-up, listening to his favorite music, and being lavished with gifts of tickles and kisses. The day passes like any other. And though we require none, Calvin's gift to us is his boundless love by way of his contagious giggles and warm hugs.

I guess Calvin landed in the right family because we tend to focus little on presents. We celebrate much like I did when I was a kid, with emphasis on the secular and the mere fact that the days are getting longer, with a few home made gifts and simple trinkets thrown in to the mix. We center our holidays at home just being together, then after we put Calvin to bed we enjoy quaffing the Kolster family's bourbon-eggnog, preparing a special meal, opening a nice bottle of red wine—or two—and relaxing in front of the fire. And if I'm lucky, at some point, I get to gnaw on a stick of salami.

lightning strikes

Calvin slept well through the night then awoke at 5:15 a.m. banging on the crib side, as he does every morning, wanting to get out. Sometimes, and if it is very early, I lay him back down under the covers encouraging him to fall back to sleep. Today I brought him into our bed. Michael had spent the night in Boston. As Calvin lay next to me he was restless and squirming. I detected a few suspicious jitters and jolts but I was reassured—at least partly and for a time—by his hugs.

But at six o’clock, while in my embrace, a lightening bolt struck him solid, the seizure’s alchemy transforming his supple body into a steel rod. I watched the seconds tick into minutes. None of my kisses, caresses or words halted the convulsions that ripped through his body and brain. After a minute and a half he started to breath—horrible, constricted gasps—but breaths nonetheless. Then came his contorted, terrified expression as his quivering limbs, cramped and mangled, rose into the air.

In the dim light of the dawn, the seizure having stopped, and after half an hour of tossing, turning and rubbing his forehead in his hands, an odd lopsided grimace appeared on his face. I had seen this type of seizure before. And though it was still thirty minutes until dosing time I opened his mouth and dropped the tiny, round white pill onto the back of his tongue, chased it with a little water and grieved for my boy's suffering.

Many like to say that there is some divine plan in the making of Calvin, and so it follows, of suffering seizures that beat the living daylights out of him and waste his brain, and thus, of the need to stuff him full of toxic chemicals that debilitate him further. They say there is a purpose to his torment, or in other words that he needs to suffer—that he must suffer—to fulfill some higher design. And while I know these believers have the best of intentions in justifying the scourge of Calvin's epileptic storms, I don’t buy it. I never have. I never will.

wallpaper.worldsimple.com

small talk

I’m not one for small talk, but sometimes the situation requires it. I guess I do as well as anyone, trying to avoid conversation about the weather, asking how the kids are doing, and what the holiday plans are.

During the seven and a half months that I was pregnant I met a nice woman at the pool. At first, in the locker room, we engaged in small talk, but over the months, our short conversations rounded out, like my belly, as we shared bits and pieces of our lives. Then, somewhat unexpectedly, Calvin came early and I never returned to the pool.

My new friend had sent Calvin a beautiful gift, which was waiting for us when we brought him home from the hospital seven weeks after his birth, but I never saw her.

Months later, while in the depth of my grief and despair, and on a dreaded trip to the grocery store, I saw her. Her familiar face was beaming, as usual, with that sunshine smile of hers, and tears welled up in my eyes. My desire—almost need—to hug her surprised me, but then she had always been so warm and kind. Immediately, though, I felt her release. She hastily explained that she couldn’t talk—she was in a rush—and so I said goodbye, ashamedly wiping the tears from my face.

Occasionally, I continue to see her at the grocer. At times she looks right through me and goes about her business, as if feigning not to notice. Other times when I’ve seen her she has abruptly turned and gone the other way. And coming around the corner of an aisle, unavoidably bumping into me, she flashes a cheery smile with an animated “hiiiii, Christy”, but then quickens her gait and cruises on by.

I’m curious if she thinks, because of Calvin's various afflictions, that I have some sort of contagion, like leprosy. Or maybe she sees me as a kind of vortex that, perhaps, will suck her into a black hole of misery if she gets too close, although this is hard to believe since I no longer meet her teary-eyed, but rather quite happily.

Her masquerade seems clear, appearing thrilled to see me while seemingly hiding her desire to want nothing to do with me. I find this so very odd because—although we never developed a deep friendship while only visiting at the pool—she had told a close, mutual friend how much concern and care she had for me and my circumstances with Calvin, though I've yet to see any evidence. I’ve never felt anything from her but superficiality since I first saw her at the grocer, and it makes me feel so sorry. It also makes me wonder if I might be guilty of doing the very same thing to others, of expressing disingenuous enthusiasm or concern when all I really feel is indifference. I hope not, but I think it is probable that I focus on my own worries and fall into narcissism, at least some of the time. I will say that I aspire to be honest and forthright in my relationships because that is what I desire of others, though at times I know I fail.

So, I try not to hold it against her. All of us have busy lives and our own struggles to deal with. None of us can know what another person has just experienced or what they face day in and day out, and like I said, I know I've committed the same injustices. So, when we meet in the grocer’s aisles, I hold my composure, smile politely, say "hi, how are you?" and, taking her cue, I simply move on.

just enough to be dangerous

My husband and I have always wanted to live a simple life. We wanted just one child to care for, to nurture, to teach and to love. But soon after Calvin was born, it was clear that life would not be that simple. We began learning how profoundly disabled he would be and as our dreams of parenthood started to shatter, I found myself questioning our initial plan.

Although Calvin has always mesmerized me with his beauty and charm it has been difficult to—and nearly impossible not to—compare him with other children. It amazes and shocks me to see tiny infants in grocery carts and strollers gazing at me from afar, and I find myself fascinating at their fine dexterity. Imagining other kids walking, of their own volition, side by side with their parents and asking things like why the sky is blue, weighs heavily on my heart. Often, when walking the dog I used avoid the playground near our home because seeing the children running and laughing and playing sent me into despair.

I still ask myself, "why can’t Michael and I have a chance at all of these dreams?" Sometimes I ache for it to be so. But then, I remember the reality of our situation.

Calvin, almost seven, has remained a toddler since he first started trying to walk over four years ago and, therefore, his capabilities are just enough to be dangerous. Because of his poor balance, coordination and vision he requires our constant vigil. And since he is so tall a toddler, and does not have refined protective reflexes, when he falls, he falls hard, like a tree that's been cut off at the ground. If he could walk by himself, without tripping or running into things, everything would be much easier.  Conversely, if he were confined to a wheelchair, which—though I'd love him just as much—I am thankful he is not, I wonder if I might say the same. But he’s neither here nor there, which complicates things; when I am with Calvin the chores go undone, I cannot cook, read or write. It's hands-on one hundred percent of the time unless he's in his high chair or johnny-jump-up. Fortunately we have the help of a nurse several hours a week.

I believe it's because of our time and devotion to Calvin that he has made significant strides considering his substantial impediments. I'm not sure if he would have come as far as he has unless I spent years doing things like getting down on all fours helping him learn how to crawl. He has our full attention, which has helped open up a world of possibility to him that he otherwise may not have had access to. I certainly can’t feel sorry for myself that I have had that to give. If Calvin weren't an only child he might still be lying on his back, helpless. Instead, he's become just enough to be dangerous, which is alright with me.

success

Since I was a youth I have loved this poem. I cannot remember where I came across it first, but it struck me. Now, having had Calvin—and been so profoundly changed by his presence in my life—I find this poem even more apropos.

To laugh often and love much;

To win the respect of intelligent persons

and the affection of children;

To earn the appreciation of honest critics

and endure the betrayal of false friends;

To appreciate beauty;

To find the best in others;

To give of one’s self;

To leave the world a bit better,

whether by a healthy child,

a garden patch or a redeemed social condition;

To have played and laughed with enthusiasm

and sung with exultation;

To know even one life has breathed easier

because you have lived.

This is to have succeeded.

This is an altered version of an original poem by Bessie Anderson Stanley, often falsely attributed to Ralph Waldo Emerson.

disparate regard

I once heard a story about a well-known advocate in the epilepsy community. She had devoted years to raising awareness and funds for epilepsy research. Her precious, healthy infant had started having seizures that—even after years of trying scores of medicines, special diets and brain surgery—had not been successfully controlled.

Then this woman was diagnosed with breast cancer. I was told that calls, letters and well wishes started pouring in to her. She was incredulous at the amount of notice she was getting for her own health concern compared with the lack of attention she had gotten for her afflicted child, though she had openly campaigned for the cause.

I think that this disparate regard between epilepsy and other widespread illnesses, such as breast cancer, comes down to societal ignorance, stigma and apathy. Unfortunately this ignorance translates into abysmally inadequate funding to develop treatments and find a cure.

Indeed, I was unaware of epilepsy’s pervasiveness and menace until my son Calvin was diagnosed with it when he was two. I soon learned that seizures are difficult to control in at least a third of people who suffer from them. I have seen Calvin experience the dreadful side effects from drug treatment and I now know the scary truth that epilepsy can be fatal—that it could take my son’s life. Three million Americans live this same horrible truth but you’d never know it. I aim to change all that.

Please share Calvin’s story.

To learn more please go to my Epilepsy Facts page and view these archived blog posts:

you're not immune
the truth about epilepsy
the stigma of seizures
SUDEP
scores of seizures

no end in sight

From last night:

I kept Calvin home from school again today because of a bad cold he’s had for over a month. Even so, he had a pretty good day. Turns out, though, it was too good to be true.

When Michael got home Calvin was in the bath. I told him that he had had such a good day—happy, good balance, great energy, super agile crawling up the stairs—so good that, “if it hadn’t been only two days since the last seizure, I’d be expecting one.”

Just as the words were leaving my lips Calvin started getting suspiciously hyper in the bath, so I let the water drain, helped him step out of the tub and wrapped him snugly in his towel. We made it to the room where his pajamas were laid out and I lifted him onto the bed. Seeing his face in the dim light, flushed and expressionless, eyes jerking up to the left, I knew the storm was coming. I turned him onto his side and within seconds he started to convulse; he didn't stop until three grim minutes later.

It is possible that, although Calvin has been sick, which lowers his seizure threshold, he may be habituating to his seizure drug. Since August his fits have gone from every two weeks to every six to ten days, and this last span was only two days.

Because of this development, yesterday in Boston, we discussed treatment options with Calvin’s neurologist, along with her nurse and dietitian. In an effort to prevent more seizures we are faced with either increasing his current medication again or introducing a second antiepileptic drug. With either option come more side effects. The thought makes me ill.

He’s been restless tonight. Right now he is banging on his crib for me to come and give him more water even though he drank three bottles, like a parched camel, just five minutes ago. I fear he is in store for another seizure before the night is over. There’s seems to be no end in sight to this misery.