rhetorical questions

While I sleep Calvin seizes, both for real and in my dreams. After a grand mal at two o'clock this morning, I dreamt of him seizing and chewing the inside of his cheek until it was like a wad of ground beef. Ninety minutes later, I woke up to him seizing again. My angst around his suffering made me think of a recent conversation.

Earlier this week I met up with a woman, perhaps a new friend, who not long ago arrived on my porch sharing information about Jehovah's Witnesses. During that visit, I had let her in to meet Calvin. This time, we sat across from each other at a bakery, snowflakes beginning to fall outdoors.

Over coffee, and while I nibbled a blueberry muffin, we discussed religion, science, God, Adam and Eve, evolution, heaven, hell, mankind, sex education, eternal life. I spoke of Calvin, and of his rough beginning. I asked her, in all seriousness, how she thought Noah had managed to collect Arctic animals such as polar bears, plus every living species of insect and animal—indeed multiple millions—into a 500-foot-long vessel, and then handle the rapid and exponential procreation of vermin and others, the colossal amount of shit they'd produce during a forty-day deluge, not to mention how he'd feed them. Without dismissing the existence of Noah, his ark or a major flood, I characterized the account and others in the Bible as folklore—stories written by man to help explain the unexplainable and perhaps to invoke the notion of God's wrath to maintain societal order.

Our conversation proved fascinating and respectful. I told her that I wasn't looking for answers to or explanations for life's messy situations, explaining my belief that nature simply runs its course. Though I don't entirely rule out the possibility of some kind of a divine force or creator, I don't believe in hell or Satan or angels, nor that Jesus is our Lord and Savior, though he sounds like someone I could hang with. After referencing other stories in Genesis, she described the Book of Revelations, saying God would one day make Calvin whole, make him into the normal boy I pined for in my most recent post.

Later, while taking a shower, I wondered what justification might be given as to why God would be waiting to make kids like Calvin healthy and whole. Why prolong Earth's miseries? I mean, if a merciful God exists, what's the holdup? Release the aid! We're fighting all kinds of battles down here! What has this alleged God got to prove or gain from withholding relief? He's not up for re-election. Or is this all some sick experiment? And as I watched the water spiral down the drain, I remembered what another friend had written to me recently:

If you could have seen the Florida skies at daybreak this morning, it would have given you pause to think about a Creator ... a mackerel sky that the sun lit up bright orange against a cerulean blue background. “The heavens declare the glory of the Lord, the skies proclaim the work of His hands ...”  (Psalm 19) 

As an integral part of this immense universe, I've seen a thousand blazing skies which astound and move me deeply. As I toweled myself off, I wondered how the majesty of nature's beauty is often declared as evidence of a divine creator, but the horrors of the world—famine, war, genocide, disease, poverty—despite infinite prayers calling for mercy, are not convincing proof of God's neglect or lack of presence.

Every day the impeachment trial, which I've been listening to intently, begins with the Senate chaplain's opening prayer. Monday, the chaplain prayed that God would lead the senators to do His will. What does that even mean? Will any outcome be proof of God's will? Is it God's will that children like Calvin suffer? Does God take sides in war and basketball? What makes one religion righteous and another counterfeit?

But I'm not looking for answers to these questions. They are rhetorical. I know what I believe in my heart, brain, bones and, if I have one, my soul. The sun rises and sets in infinite, glorious colors. The earth is quaking, drowning, burning as we speak. Human beings of all races and religions are good people just trying to survive. Some folks for whatever reason turn out to be corrupt, deceitful and threatening. Oceans and night skies glimmer endlessly. Nature can be unforgiving. Children are virtuous. Hatred is learned. Life is hard. People suffer needlessly. Prayers go unanswered. While I sleep, Calvin seizes. I'm not worthy of his misery.

Photo by Michael Kolster, 2015

what grief looks like

Unless there's rain, dreary days can make me grieve. Gray skies end on end tend to put the glum on me. Damp air chills my bones. Any attempts to walk with spring and purpose are hobbled by icy sidewalks.

These mid-winter doldrums make it all too easy for me to feel deeply some transient despair. Stuck inside, The Turkey is up to his usual antics—manic outbursts, intense, erratic and aimless behavior. He can do a good job of driving me absolutely batty. Hard to concentrate. Impossible to relax. Difficult to get anything done. Despair about how he's turning out feels inescapable. Baseless guilt and gnawing worry shadow glimmers of what might be considered joy.

We take Calvin to the coffee shop and the grocery store when, in winter, there are few other places for him to walk, and roughly zero other activities that he can do—we can't play in the snow, we can't take him skiing or skating, we can't bring him to the movies or for walks in the woods. I watch him limp across the street with his father, his gangly legs stiff and crooked, his feet turning awkwardly inward, one arm circling above his head as if he were riding a bucking bronco. Someone once said my boy walks like an astronaut. It wasn't meant as a compliment. I ask myself, when did what was already wrong with him get worse (in this case, his walking)?

When, rarely, Calvin looks me in the eyes without his glasses, I can sometimes see glimpses of a normal boy—the one he might have been if not for any number of things which we can't make right. But when I pull back and away I see one eye turning in, I see him drool, see him shriek, stomp, bite, bang, careen, drop, flail, wander, perseverate, seize. I see a face and body so handsome, mild and familiar and yet so very foreign and bizarre to me. And, I see my own grief. I wish he could talk to me. Eat with a spoon. Dance. Run. Play with friends. Watch videos. Draw. Sing. Get along on his own.

On a beach walk last autumn I remember musing on what grief looks like. I decided then that grief looks like the curly sprig of a young widow's mane in the wind. Grief looks like a slate-blue day in winter. It looks like khaki pools of water filling footprints left in sand. Grief looks like a messed-up sonogram. A withered rhododendron. A face rendered unrecognizable by sleep deprivation, stress, disappointment and age. Grief looks like a loved one being gradually defeated by cancer. A gorgeous bird found dead on the sidewalk. A mother lost to dementia. A desolate street in an ice storm. A child in mid-seizure. A helpless parent. An empty seat at the table.

But grief also looks like a prison cell. A hungry child. A genocide. A war unending. Raging wildfires. Melting icecaps. Suicide. Poverty. Famine. Abuse. Oppression.

And as the sun briefly climbs out from behind the clouds and warms my thighs this morning, I think to myself, perhaps we have it easy.

the kid

The kid is getting big. I remember a time when he was little(r) and I worried and wondered if he'd get super big and whether—not knowing his own strength—he might snap my neck just hugging me, like Lennie did to that gal in Of Mice and Men. Though he's only 4'9" and 73 pounds, he can still (innocently) pack a punch with his flailing arms, and fists.

He's also nearly outgrown his johnny-jump-up, and I'm not quite sure what to do. I might be able to stitch a few extra inches onto the nylon straps supporting the padded seat, but I'm not sure they'll hold. Readers, any ideas for me?

weekend update

At noon, it's fourteen degrees out. Last night it got down to two. We're sick as dogs inside this lonely house. Sidewalks are icy. While walking Smellie yesterday the windchill factor was well below zero. I feared my jeans would freeze to my kneecaps. The dog has become a little bit gimpy and we don't know exactly where in her leg it hurts, or why. We think it's arthritis as the result of Lyme. Can't get outside today to walk her since I don't have a nurse to watch Calvin.

Michael is on his way home from being gone for nearly twelve days. I hope he brings Hawaii's sun and warmth along. The other night a friend asked if I resented my husband's travel. I told her only sometimes. It's his work, and it makes him happy and he misses home and wishes I were with him, with or without our boy. Alas, because of Calvin, it can't be so.

While Michael has been gone, his parents have been regularly checking in on me by phone. Several friends have walked Smellie when I can't, braving the wind and cold. A dear friend and his daughter shoveled my snowy driveway. One lovely dropped by some homemade spaghetti and cookies. Another brought me tulips, English muffin bread, tea, honey, Meyer lemons and Honeybell oranges. Still another showed up with a warm loaf of lemon poppyseed cake. I'm so lucky to be taken care of by friends in this small town.

Last night Calvin had a grand mal seizure. Strangely, I didn't see it coming. It was early enough in the night that I feared he'd have a second one like he did the past two times. So, I gave him a little extra homemade THCA oil and spooned with him. He didn't have another one.

I hope to get some sleep tonight. I feel wrecked, with achy eyes and a voice which is nearly gone. Thankfully, Calvin is in a mellow mood, thus has been pretty easy to take care of. Of late, I've seen his behavior trending toward more calm. From his room next door I hear him yawn. Time to try a nap of my own while Smellie is out walking with friends. Soon she'll be on her way home.

From the field behind our home.

double whammy

Blame last night's double whammy on the arc of the full moon. Blame it on a low-grade fever or virus. Blame it on sleep deprivation or anxiety, the barometric pressure or gravity. Blame it on a lack of fluids, a dip in blood sugar, pressure or O2. Blame it on the protracted effects of benzodiazepines which should have never been prescribed for my three-year-old. Blame it on the weight of the world, the scourge of hateful rhetoric, the insanity of deceit and greed, the power of willful ignorance, the threat of war. Blame it on injustice. Blame it on the patriarchy. Blame it on the pharmaceutical industry. Blame it on the superficial solace of the stock market. Blame it on yesterday's regrettable IEP. Blame it on the vacuum of Daddy's absence. Blame it on the warm front coming, and being trapped indoors. Blame it on his brain's messed-up pathways. Blame it on growth spurts and raging hormones. Blame it on the vile nature of epilepsy. Blame last night's two grand mals on anything and everything.

Calvin's grand mal seizure from eight years ago; some things regrettably never change.

             

weight of the world

Saturday night, I listened to my son wail until he was nearly hoarse. I watched him writhe in some unknown pain. The event, whether cramps, hallucinations, night terrors, or most likely migraine, went on for five hours. None of the measures I attempted—acetaminophen, ibuprofen, THCA oil, CBD—helped to quell his misery.

Downstairs, our dinner guests kept me sane with their loving support through a difficult situation. Hell, we even had some laughs in-between sips of wine, bites of Michael's melt-in-your-mouth porchetta, mashers, green beans, and hearing Calvin shriek. It didn't help for me to remain upstairs with my boy; he's getting big, so someone's liable get hurt if I were to crawl into bed with him, though I did make one failed attempt. Luckily, he's safe in his padded, paneled, netted-canopy bed, able to flop around into positions most comfortable for him. At one point, during my frequent checks on him, he had drifted off briefly while sitting up.

Calvin finally fell asleep close to eleven. Regrettably, three hours later he had a grand mal followed by another one at six a.m. I can't remember the last time he had three serious events in less than twelve hours. He had been doing pretty well lately.

As I laid next to Calvin in the wake of his first seizure, I wondered if perhaps he feels viscerally the weight of the world, causing him anguish or triggering seizures. I thought of the damage our reckless president is doing to the already volatile Middle East. I feared for the animals and people in peril from Australia's rampant wildfires. I worried over a friend who is suffering from late-stage cancer and the side effect from its heinous treatments. I fretted over recent hard conversations with a dear friend regarding prejudice, judgment, the virtues of political correctness, and the hurt felt by both of us. I wondered if Calvin could feel me.

Then, after spending too much time brooding in bed next to my son, I remembered a girl I had met at the grocer earlier in the day. A thin, blond, sweet seventh grader, she had smiled shyly and waved, saying, "Hi Calvin," as we passed her in front of the cold cut case. Holding onto Calvin's hand, I stopped to return her greeting, introducing myself to her father. She explained having met Calvin last year while visiting his junior high school's Life Skills class where she made friends with another student very much like our boy. It dawned on me who she was and that, a few weeks earlier, I had met her mother and another woman who had come to our door sharing info about Jehovah's Witnesses. At first, I'd been a bit sharp with them; because of Calvin, I'm prone to growl whenever anyone tells me that "everything happens for a reason."

"I am not worthy of my son's suffering," I declared to the proselytizers, my heart pounding with contempt for any suggestion that Calvin's misery is some divine plan, a notion which to me seems no less than sadistic. I went on to explain my disdain for organized religion, my disbelief of a merciful or judgmental, anthropomorphized god, stressing my conviction that the Bible is metaphor written by men to explain the unexplainable and to further their power and control over others.

The Jehovah's Witnesses had been kind and forgiving, respectful of my beliefs. I went on to let them in and led them upstairs to meet Calvin, who was in bed resting. There, we exchanged ideas about god, the afterlife, and hell on Earth. Some of our beliefs seemed to overlap. They were loving to Calvin and most sympathetic to our burden. It was a short visit, and as they were leaving I gave them both hugs, plus my card, which has a photo of me and Calvin printed on one side and my blog and email addresses on the other. Two days later, one of them wrote to me, explaining the discovery that her daughter knew Calvin.

Back at the grocer, I said farewell to the girl. I thanked her for being so kind to Calvin and for making and keeping friends with his former classmate, who is non-verbal, developmentally delayed and seizure-prone, just like Calvin.

"You're going to save the world," I told the girl, firmly believing in my assertion that this gentle creature standing before me in boots and a little overcoat, this old soul with wavy blond locks swept back into a bundle, doesn't have a mean bone in her body and loves everyone, just like Calvin.

Lying next to Calvin that night after his miserable pain episode and first of two seizures, and holding the images in my mind of the girl's rosy face and that of her mother's, I drifted off to sleep with the weight of the world—Calvin—in my embrace.

Years ago, photo by Michael Kolster