rough patch

A fortnight ago, Calvin completed nineteen weeks—three and a half months—without having any seizures. It was an all-time record. It's not hard to remember a time not that long ago when nineteen days would have been a record, and even nine days seizure-free was considered pretty good.

Sadly, the next day Calvin suffered back-to-back grand mals amid a low-grade fever. Four days later he tested positive for Covid despite not having any significant respiratory symptoms. It might sound strange to you, but I was actually relieved to know that he had Covid, which meant at least there was a knowable trigger for his grand mals as opposed to them just happening out of the blue. It will be interesting to see if he can go another months-long stint after he recovers. If history is any indicator, he may not.

And so, this past Monday was Calvin's tenth day at home resting, and during that time my patience thinned more than I'd like to admit. Calvin remains restless as ever, likely because of the drugs he has used in the past and/or the ones he is taking now. He still bites surfaces incessantly, and has begun to lean over and beaver away at the molding on the walls to either side of where his jumper hangs, he's that tall. He puts his fingers in his mouth and drools as much as ever, and puts his hands on my face constantly, so it is a miracle that I haven't gotten Covid from him. He has had terrible trouble falling asleep, and instead bangs on the wall or kicks the inside panel of his safety bed sometimes for hours despite being laid back down often. It drives me and Michael up the wall as it is impossible to ignore. We aren't sure why Calvin is tossing and turning as much as he has been since the Covid. It might be because of the Covid, but we can't be certain.

It's blogs like these that cause me to consider scrapping it all together. I've become weary of writing the same damn thing over and over for almost thirteen years. Nothing seems to really change. I imagine a lot of you are tired of reading about the tedium, too. I'm not sure I'm learning anything new by exploring the same topics ad nauseam. Moreover, I want to feel less of the things that make me worry and mad and anxious. And it's hard not to believe that putting this stuff down in words isn't doubling the insult to me and my readers.

Sigh.

On a couple of non-Calvin-centric notes, I've continued running and have been training for my first half marathon on October 1st. I love the way running makes me feel free, alive, and unencumbered. I'm also assistant coaching a parks and rec kindergarten through sixth grade co-ed cross-country team like I did in the spring, and it is so much damn fun.

Calvin is back at school and no longer has to wear a mask. He's begun eating better again, and last night was slightly more restful than of recent. Here's to hoping this recent rough patch is soon over. Cross your fingers and knock on wood.

get ready to cry

Long ago, my brother Scott forwarded an email to me. On first glance, it appeared to have been one of those chain emails that I loathe receiving, the ones that, at the end, tell you that you must forward it to others and something good will happen to you. But it was not one of those. Rather, it was a list of incidents relating people's humanity, empathy, gratitude and grace, and what made it even nicer for me was its absence of any mention of God; it was simply an account of the amazing creatures we can be if we are open, loving and mindful of others.

Thank you, Scott, for knowing that this was something I'd appreciate, even though I'm often cynical and despondent, and for sending it on.

Here it is for the rest of you. Enjoy:

Today, I interviewed my grandmother for part of a research paper I'm working on for my Psychology class. When I asked her to define success in her own words, she said, "Success is when you look back at your life and the memories make you smile."
 
Today, I asked my mentor - a very successful business man in his 70s- what his top 3 tips are for success. He smiled and said, "Read something no one else is reading, think something no one else is thinking, and do something no one else is doing."

Today, after a 72 hour shift at the fire station, a woman ran up to me at the grocery store and gave me a hug. When I tensed up, she realized I didn't recognize her. She let go with tears of joy in her eyes and the most sincere smile and said, "On 9-11-2001, you carried me out of the World Trade Center."
 
Today, after I watched my dog get run over by a car, I sat on the side of the road holding him and crying. And just before he died, he licked the tears off my face.

Today at 7AM, I woke up feeling ill, but decided I needed the money, so I went into work. At 3PM I got laid off. On my drive home I got a flat tire. When I went into the trunk for the spare, it was flat too. A man in a BMW pulled over, gave me a ride, we chatted, and then he offered me a job. I start tomorrow.

Today, as my father, three brothers, and two sisters stood around my mother's hospital bed, my mother uttered her last coherent words before she died. She simply said, "I feel so loved right now. We should have gotten together like this more often."

Today, I kissed my dad on the forehead as he passed away in a small hospital bed. About 5 seconds after he passed, I realized it was the first time I had given him a kiss since I was a little boy.

Today, in the cutest voice, my 8-year-old daughter asked me to start recycling. I chuckled and asked, "Why?" She replied, "So you can help me save the planet." I chuckled again and asked, "And why do you want to save the planet?"  " Because that's where I keep all my stuff," she said.

Today, when I witnessed a 27-year-old breast cancer patient laughing hysterically at her
2-year-old daughter's antics, I suddenly realized that I need to stop complaining about my life and start celebrating it again.

Today, a boy in a wheelchair saw me desperately struggling on crutches with my broken leg and offered to carry my backpack and books for me. He helped me all the way across campus to my class and as he was leaving he said, "I hope you feel better soon."

Today, I was traveling in Kenya and I met a refugee from Zimbabwe. He said he hadn't eaten anything in over 3 days and looked extremely skinny and unhealthy. Then my friend offered him the rest of the sandwich he was eating. The first thing the man said was, "We can share it."

photo by Lyle Owerko–Gamma

what matters

While grasping Calvin's wrist, we limped along the narrow road toward the water. Every few seconds I wiped drool from his chin with the corner of the bandana tied around his neck. He grimaced as the wind whipped his hair and the sun beat his face. A couple hundred yards further, when we reached the tip of Simpson's Point, I plopped him down at the top of the decrepit cement boat launch. It was a stunning day, and the mild waters of high tide had attracted the usual crowd of sunbathers, swimmers and waders.

We sat for a spell and visited with a few friends before a Parks and Recreation employee approached and instructed me to move my car because the back bumper extended inches beyond a no-parking sign. I hadn't noticed my error when parking, nor had I noticed it when I had wrangled Calvin out of the car, making sure neither of us would careen into the ditch at the shoulder. And though I was peeved that we had to leave our perch prematurely, I was grateful that we'd had a few minutes to soak up the sun before our day's "adventure" was cut short. On the way back to the car, the employee again approached and said he'd been wrong, that my car wasn't over the mark. By then, however, having made Calvin walk all way the back to the car, I decided it was best just to leave than to make him do it all again.

All summer, and especially on weekends, I've been lamenting my imprisonment with Calvin (Michael usually works several hours on Saturdays and Sundays, too, and Mary usually can't help on weekends.) Though Calvin has not had a seizure in over four months, lately, he seems restless as ever, and less interested in spending time in his beloved jumper, which means more of our time is spent walking in endless loops around the house and yard, and driving loops around the back roads in the car.

I had been mourning my loss again—the loss of not having had a healthy child. If things hadn't gone so wrong nineteen years ago, on a day like Sunday Calvin likely would have been off on his own, hanging out with friends, traveling the world, going for bike rides and runs, to the beach, to the park, on a boat ride, paddling, water skiing, fishing, skateboarding, hiking. Who knows?! And I'd be enjoying the day to myself, or with Michael even, perhaps in the garden or at the shore with a book in my lap, or simply walking a long stretch of beach without a little ball and chain weighing me down.

Later on, I took Calvin to the grocery store. We go there virtually every day. He likes to push the cart—it seems to make it easier for him to walk—while I steer it from the front. Even before entering the store, he gets a big grin on his face which only widens when he gets to cruising down the aisles, and especially when we head to the meat department which is his favorite. He loves to stand holding onto the low edge of the case and stare up at the florescent lights. It's near impossible to pry him away, and we end up making several stops at various spots along the case between getting other groceries.

Often, fellow shoppers smile at us. Some will tell me what a good mother I am, or remark on the love I show Calvin as we embrace in the middle of the produce department or in the check-out lane. On a few occasions, strangers have even given us cash, which I try my best to refuse.

When we exited the store, Calvin still had his big goofy smile on his face. It made me think about how happy it makes Calvin just to hang out in the familiar grocery store with its colors and lights and shiny, crinkly packaging. It made me think of how happy it makes me to see him like that. It made me realize that I don't have to be in some exotic place for days, or climbing some mountain, or visiting a new city to feel true happiness. Rather, what matters is the simple, easy, mundane moment—whether rounding a bend in the car and looking back to see Calvin contentedly chewing on his macrame rabbit, his shoe or big toe, or five minutes with our butts parked at Simpson's Point, or a half hour in the grocery store standing mid-aisle—with my sweet, smiley, loving kid in my arms.

 

 

setting records

In July, this kid set a new personal record by going three months without having any seizures! No doubt Calvin is benefiting from one of his two new-ish drugs, Xcopri, (the other being Briviact.) It does seem that having fewer seizures has helped him feel better overall; he is having fewer manic outbursts, wakes up content and goes to bed smiling when we hug and kiss him.

Amid fewer seizures, and therefore less anxiety and worry for us, we've been taking him to a few more places. On average, he has been more compliant about walking. We are seeing him smile more often—not just at bedtime—which warms my heart. Here he is walking at one of our favorite haunts, Simpson's Point, which we have visited by car probably thousands of times, particularly during the pandemic when Calvin did not go to school for fifteen months and was unable to access remote learning (because he is incapable.)

Now Calvin's brief and abbreviated summer school is already over, and so he is left with zero services for the entire month of August. That means we will be taking more car rides and walks and trips to the grocer. He's pretty game for it all, at least more than ever.

Thanks for all your love and support. Sorry I'm not writing as much these days. For now, suffice to say we're all doing well!

good news

my days are still taken one at a time. days are long. time is short. sleep is thankfully less elusive than it used to be. and i have some good news ...

one of calvin's new drugs, xcopri, is helping him sleep better. it has also helped him to go sixty days without any seizures on the heels of a forty-eight-day seizure-free stint. xcopri has also allowed us to completely wean calvin off of the homemade thca cannabis oil i have been making and giving him for nearly ten years! i'm so grateful i was able to provide it for him for so long because it seemed to help his seizure control, but what a relief not to have to source the cannabis flower, buy it, get a liquor license to purchase and ship the 190-proof organic alcohol i use for extraction, make the oil, measure it and administer it!

calvin is on track to have just a fraction of the forty-two grand mal seizures he had last year. If he continues to be seizure-free on his current xcopri dose of 200 mgs, he will end the year with only seven grand mals and one focal seizure! That may be the fewest seizures he's had since first being diagnosed when he was two years old.

as calvin enjoys better sleep and longer stretches between seizures, he seems to be happier. he smiles more when we hug and kiss him. he seems slightly more compliant when we take him places. at school, they are having him wear a compression vest, which they say calms him. i'm grateful for every bit of this and so pleased i can share it with you!

besides all this good calvin-related news, my personal joy has been coming from near-daily running, taking photos, baking, and a bit of gardening. i would like to post to my blog and work on my memoir more, but i am trying not to "should" myself. i am simply hoping to find joy and some sense of freedom from calvin-related worries.

so, forgive me if you don't hear from me much these days. i'll try to keep checking in, and i'll try to write something that is more than simply an occassional news update.

be well, friends. xoxo

maddi

A week ago today, I dropped off my beloved niece, Madison, at the airport after a week of fun with her while Michael was in Wyoming for two and a half weeks at an artist's residency. On the drive home, I kept thinking about images like these in which she is demonstrating her life-long (Calvin's life) love for my son, her little cousin.

 

While she was here, I felt like I was on a mini vacation. We did things that I rarely do. We got take-away Thai and Indian food, lobster rolls at a working dock, and went for a long walk on the beach. We sat outside around a fire a few times, and enjoyed just shooting the shit and getting reacquainted.

Ever since Madison was a little girl, she has been interested in and has had a fondness for Calvin. She really does love her little cousin. The week she was here, I found out that Madison is also an AMAZING caregiver. I've seen exactly no one besides me and Michael love and take such good care of Calvin. She needed very little training or reminding of even the smallest detail. Her love for him is so authentic, and she expresses it in so many ways and tells him often throughout the day.

 

It heartens me to know that, should anything happen to me and Michael, Madison will become Calvin's guardian. I wept on the car ride home thinking of that, because Calvin is the sweetest soul I know, and I want the very best for him when we are gone, should he survive us. We have found exactly that in Maddi.

 

And so, in the wake of this last week, my love and gratitude for her has welled up and spilled over. And, better yet, she might be coming back in August!

 

Love you Maddi. You make the world a better place.

 

huck finn

From 2012

We had the sky up there, all speckled with stars, and we used to lay on our backs and look up at them, and discuss about whether they was made or only just happened. Jim he allowed they was made, but I allowed they happened; I judged it would have took too long to make so many. Jim said the moon could ‘a’ laid them; well, that looked kind of reasonable, so I didn’t say nothing against it, because I’ve seen a frog lay most as many, so of course it could be done.

—Mark Twain's Huck, from The Adventures of Huckleberry Finn

In recent years I’ve been taken with reading and rereading the classics ... Hemingway’s The Sun Also Rises, F. Scott Fitzgerald’s The Great Gatsby, Nabokov’s Lolita, Harriet Beecher Stowe’s Uncle Tom’s Cabin, Salinger’s The Catcher in the Rye. I love them all. This time through Twain’s The Adventures of Huckleberry Finn, though, I am looking at the characters’ exploits from a much different perspective than when I was a youth.

The other day, after an entire day of wonderfully backbreaking gardening, I washed off my dirt-smudged face, pulled on some cowboy boots, donned my leather jacket and took off on a ride. She started right up with the kind of meaty, gravely purr I’ve quickly come to love. In some ways, driving my motorcycle feels liberating, like riding a responsive, obedient horse, bringing her to a gallop with the flick of a wrist—zero to fifty in no time flat.

Cool air rushed up my sleeves as I meandered down Mere Point past impressive granite shelves sprayed with heather and flox, trees caked with lichen, and some apricot-colored buds dotting a pine canopy. The air smelled fresh but of nothing else. Near the end of the road the sky opened up as did the land, and I could see across a clear-cut parcel to the water. At the boat launch I cut the engine and sat quietly gazing across the inlet.

Once the residual buzz of the motor gave way, my senses drown in the sounds of chirping birds, waves lapping the shore, and the sun on my face. At the end of a long pier, two lovers embraced as if they were alone in the world. The pier, with its weathered wooden slats, reminded me of the raft that Huck Finn and Jim floated down the Mississippi river. I thought about how their fantastic journey was as much about forging their companionship as it was about their physical adventure.

I studied the lovers—her pale arms contrasting with his black hair and shirt, their legs disappearing over the side of the pier, perhaps barefoot as I imagined Huck and Jim to be, dipping their toes into the water like I'd done before. The lovers remained as I shut my eyes and imagined Huck and Jim floating, tossing twigs into muddy water, fishing for their breakfast, building campfires, telling tales, getting to know each other's realities which were so very different and yet so perfectly matched, not unlike some fathers and sons.

I reminisced about some of my escapades as a young person and the curious friendships I’ve formed over the years. Then I considered, as I’m known to do, that my boy Calvin will never enjoy the luxury of getting into the minds and thoughts of other folks. And then a stream of consciousness overcame me . . .

he’ll never fish from a pier with his dad or build a campfire or sleep by himself under the stars or embrace a lover or tell a story or ride a motorcycle or captain a raft or talk with a friend about the origin of stars or read a book or write a word or cook a meal over hot coals and a flame or swim like a fish in a river or catch a firefly or gallop a horse or forge a friendship like Huck and Jim or the lovers or most anyone in the world or write a work like Samuel Clemens might have thought of doing when he was Calvin’s age.

Then I started up the engine and continued my own little escape up the road not far from the water's edge and under the invisible stars.

Thomas Hart Benton, A Social History of the State of Missouri: Huckleberry Finn (detail of north wall), 1936, Missouri Department of Natural Resources, Missouri State Museum.. From cover of Gerald Graff and James Phelan, Adventures of Huckleberry Finn: A Case Study in Critical Controversy (Boston, Bedford Books, 1995).