7.30.2022

to love life

We sat in the closeness of the sticky mid-morning heat, our bare arms and thighs touching. The rickety bench Woody gave me, one that dropped another screw recently, held us even as it swayed under our weight. I wrapped my hand around hers and kissed her cheek. We drank little rivers—she a sparkling citrus-scented water from a can, and I tap water held in a heavy green glass. We listened to a goldfinch sing as the wind swept through the trees. It felt as if we were the only ones in the world, and tears of sorrow came to us both as we contemplated life's tragedies.

During our walk earlier, she and I talked of mosquito bites, politics, running races, friendships, gardens, daughters, sons. Something flew up the open leg of her shorts and stung her repeatedly. I peeked into the back of her waistband and a bee—or was it a wasp?—flew out. She bent and plucked flat leaves of plantain, put them in her mouth, chewed them into a mash and applied tiny wads to the stings as a medicinal salve meant to draw the poison out.

"Everything we need is here for us," she said, meaning that nature is the original balm, then adding that we've just forgotten how to use it. I thought of Calvin's cannabis oil and how well it seems to help quell at least some of his seizures.

On our walk home, we stopped to cut—with permission—bunches of nodding sunflowers from our friends' backyard. Some of the smaller ones, which were still closed tightly like little fists as if reluctant to open to today's world, reminded me of my newly-born, four-pound, six-week preemie's apple-sized head and cinched brow. What a difficult yet extraordinary road it has been since then.

Later, when early evening came around and as I washed up dishes listening to my Calvin moan and rustle in his bed upstairs, I was again on the verge of weeping. My son is so often out of sorts or miserable, suffering from one thing or another inevitably brought on by seizures and/or their drug treatment. Though it had only been five days since his last grand mal, I could sense one coming by his bad balance, stubbornness, intensity, neediness, sour breath, eye poking, fingers in his mouth and mine, the new moon on the rise. I thought again about my earlier conversation with my friend. While strolling along a wooded path we had discussed abortion and the recent Supreme Court's abysmal decision to reverse Roe. I told her that, had I known for certain early on in my pregnancy that Calvin would be born missing most of the white matter in his brain which would cause him to be legally blind, uncoordinated, nonverbal, incontinent, cognitively impaired and—worst of all—be pummeled by thousands of uncontrollable seizures, I might have chosen to end the pregnancy to spare his suffering. To say that life for him is limited and presents major daily challenges, pain and miseries would be a gross understatement. Lamentably, there is so very little that Calvin seems to enjoy, mostly because he's been ruined by the drugs which cause him, at the very least, to be impossibly restless, making it harder, too, for me to live the life I want to live.

Just before my husband arrived home for the evening, I sat near the open French doors which look out onto the garden. There, while I reflected on my day and wrote this post, I came across this poem by Ellen Bass:

The Thing Is

to love life, to love it even
when you have no stomach for it
and everything you’ve held dear
crumbles like burnt paper in your hands,
your throat filled with the silt of it.
When grief sits with you, its tropical heat
thickening the air, heavy as water
more fit for gills than lungs;
when grief weights you down like your own flesh
only more of it, an obesity of grief,
you think, How can a body withstand this?
Then you hold life like a face
between your palms, a plain face,
no charming smile, no violet eyes,
and you say, yes, I will take you
I will love you, again.

    It struck me that I'd come across a poem so fitting for me, for my life with Calvin, and for the day I had just lived. 
    
    Just as Michael and I were sitting down for another sublime dinner in the screen porch, I heard Calvin make a strange noise. In that instant, I thought again about grief—ours, his, my friend's, everyone's—as I bounded up the stairs to find my sweet, pure, innocent beloved son—the boy who rocks my world in the most terrible, lovely, heavy (an obesity of grief) and amazing ways—as he was seizing again. I stroked his thigh and Michael embraced him and kissed his face. We've done the same perhaps thousands of times before and will very likely do the same a thousand times more, because Calvin is our precious son, and because it is our life, and in most ways we love it, and what else is there?
 

7.23.2022

little enigma

I know it's been awhile since I've written. Calvin has had a bit of a hard time lately due to who knows exactly what since he can't tell us—it is always a mystery—but probably some combination of an increase in his newest epilepsy drug, Xcopri, and a recent decrease in his older epilepsy drug, Keppra. My guess is he is experiencing some withdrawal seizures and symptoms, and my bet is that the Xcopri and my homemade THCA cannabis oil is helping to quell some of them.

Suffice to say, I haven't had the wherewithal or the headspace to write. Instead, I've been training for a 10K running race called Beach to Beacon, which happens two weeks from today (I've never done a road race) and I've been taking loads of photographs of trees and flowers and water and my little enigma this past year, which I'll leave here for you to consider. Click on any of them to enlarge.

I hope, dear Reader, that your summer is going well as can be and that you're getting out and about. As for me, I'm enjoying my car rides with Calvin, and my runs and walks on the back roads and trails with or without Smellie, plus a bit of gardening, small and infrequent gatherings with friends, good movies, eating Michael's delicious meals in the screen porch, and this sanctuary of ours. And of course, I continue to live vicariously through others, perhaps even through you.

7.06.2022

like no other

Like wax off of a candle, the days drip, drip, drip. In profound ways, each one is nearly identical to the last and will be very much like the one after. Events beyond the mundane rarely happen. This trend has lasted for nearly two decades and will likely continue for at least as long. I'm not completely sure how I've been able to or will deal with the monotony of it all.

The only real change is that my boy is older and bigger. And yet, at eighteen, every day I still have to spoon food into his mouth. Change his diapers. Give him his medicines. Bathe him. Dress him. Walk him around. Get him to poop. Wipe him up. Put him to bed. Listen for him in the night. I must watch him knit his fingers, poke his eye, stare at the sun, suffer miserable side effects and seize. I have to listen to him moan and grouse and screech and feel him grab and scratch at me. Now and then my patience thins, and when Calvin stretches it to its limits, I become ugly both inside and out. Perhaps you know what I'm talking about.

Monday was one of those days. Though the weather was stellar for riding bikes, boating, fishing, hiking, swimming or going to a park, I was stuck with an out-of-sorts son making circles inside the house, in the yard, in the car. Despite the Independence Day holiday, Michael was off taking pictures, because what is there to do that is any fun for us as a family? It seems we've tried it all before and have met mostly with dismay and frustration. With Calvin in tow, beaches, restaurants, cafes and strolls are all virtually impossible. Adventures of any kind are a major undertaking and often end in disappointment since our son is incapable of sitting still or attending to any activity or subject. I wish that were hyperbole.

And so, again, I sat at home feeling sorry for myself. Perturbed, I pined for an escape—San Francisco, Seattle, New York, Paris, Lisbon, Rome. Places in which I used to live and those I've visited and roamed.

Monday morning, Calvin and I went on our daily drive—a kind of respite for me even though I'm not alone. He bitched the entire time like he used to all too often. On our way home, we drove past a friend's house. She and another gal were outside soaking in the gorgeousness of her perennial garden, lounging in the shade draped in a couple of butterfly chairs. Their sun hats seemed to float over the day lilies beginning to bloom. I felt a pang of jealousy. In waking hours, Michael and I can't take our eyes off of Calvin. We must take turns watching him, staying within arm's reach so he doesn't fall. Can't leave him unattended for a second unless he is secured in his safety bed, and even then we have to listen for him over the baby monitor. There's no escaping him. Can't find real relaxation and solitude. Can't send him anywhere on his own. In that way, we don't have much freedom unless he's with his pal Mary or at school.

In the late afternoon when Michael got home, we all drove to Pennellville to pick up our friends' farm share since they're out of town. Afterward, we drove out to nearby Simpson's Point which is a regular stop on my morning drives with Calvin. We pulled into the turn-around, parked and watched the bathers from the car. Michael spotted a friend and went to say hello. I got out of the car to take a few nearby photos while Calvin sat in the back seat gnawing his toys. Our friend's wife emerged from the waters and came to visit with me. So that I could keep an eye on Calvin, we stood next to the car catching up about our boys, our gardens, our various goings-on. Eventually, I openly lamented the monotony of my days with Calvin. Then, in what I believe was a loving and concerned attempt to level the playing field, she told me that the sameness of days is something everyone experiences, that it was that way for her at work, too. I told her, with gratitude, that I hadn't exactly thought of it in those terms before.

But late that night, after I had gotten out of bed for the third time to lay my restless boy back down, cover him up and to wrestle his bed pad which had gotten untucked and buckled under him, I had a thought: the monotony of my days is wholly different than what my friend was talking about. This was an eighty-plus degree holiday weekend, a day made for barbecues and picnics, watching parades and fireworks or taking a dip in the cove. Michael, Calvin and I were there in our street clothes. We had simply been on an errand and had taken a detour. We were not sunbathers, swimmers or waders. Our teenager was not frolicking in the water with his buddies. We were not there reclined in fold-out chairs reading our favorite novels or sipping iced drinks from a thermos. We were not resting under wide-brim hats in the shade. Those are things we never do, don't have the luxury of doing with Calvin because he can't sit still. We were doing what we always do when he's around, which is practically nothing beyond driving the back roads. And yet, we were grateful for our astoundingly serendipitous "adventure," and to get a slice or scent or taste of what others were able to immerse themselves in, some of them perhaps for hours.

After a short visit (we had to get home for Calvin's evening seizure medicines and early bedtime, otherwise we would have lingered) we said our so-longs to our friends. But before we drove off, I decided I should at least test the waters. I padded down to the boat launch past folks in bikinis and tanks, trunks and sunglasses. Before we had embarked, by a streak of luck I had slipped into my flip-flops for the first time this summer and had rolled my jeans up. I stood at the water's edge and let the gentle waves lap over my feet and ankles. It felt refreshingly cool, though not too cold for a swim. There on the point, I closed my eyes for a moment as if no one were around. Tipping my head back, I felt the sun and the salty wind kiss my face and neck as if a lover. For a split second, I let the elements take me somewhere far away and exotic.

And as I finish writing this, I realize Monday had turned out to be a day like no other.

Simpson's Point