recent dealings

a sick child. a string of painful restless nights for him. rude awakenings. too much missed school. the surgery to remove our dog smellie's melanoma. too many tiffs requiring apologies and forgiveness. a mass shooting in a nearby tight-knit community—eighteen people dead. the shooter's car and body found a mere mile from michael's studio. conversations about gun violence and gun safety measures. conversations about suicide and its reasons. softly schooling myopic, well-meaning people who think suicide is somehow a selfish act rather than from unimaginable suffering. steadfastly countering other people's ignorant comments on the topic. too many sleepless nights. another uncomfortable, contentious IEP. smugness. the feeling that others are disingenuous. mistrust. calvin's grand mal after five and a half weeks of seizure-freedom.

and then, this poem reappears:

The Peace of Wild Things

When despair for the world grows in me

and I wake in the night at the least sound

in fear of what my life and my children’s lives may be,

I go and lie down where the wood drake

rests in his beauty on the water, and the great heron feeds.

I come into the peace of wild things

who do not tax their lives with forethought

of grief. I come into the presence of still water.

And I feel above me the day-blind stars

waiting with their light. For a time

I rest in the grace of the world, and am free.

 

—Wendell Berry

 

dear friend

now i will be strong for you. i can. you will stay in my thoughts and you will shine. i know. focus on the little things. the smell of your coffee, the feeling of the sun on your face. the wind in your hair. the quiet of a back road. the taste of clover and salt in the air. the warmth of a loved one's hand. the feeling and sound of the ground under your feet ... tarmac ... carpet ... tile ... wood ... rubber ... linoleum ... sand .... grass. the happy din of knives and forks on a plate. the rich taste of dark chocolate. the sound of bees and birds and brooks—even the memory of them. the color of the sky at dawn. at noon. at dusk. in the middle of the night. the patter of rain on a metal roof. the beauty of wilting flowers. the happy creases in the corners of smiling eyes. the long embrace of a friend. the light caress of shower water as it trickles down your back. the smoothness of soap in your hand. the buzz of a crowd. linger on these little things and let them move you. let them make you weep. they can be a joy in and of themselves. let the other big stuff take a backseat, if only for a moment. know you will remain in my thoughts. know i will listen and be there for you. as you have been for me. because, despite my own burdens (everyone has them) i have an infinite reserve of strength for you.

sixty

Despite the fact that nineteen and a half years of stress, sleep deprivation, and frustration from raising Calvin has likely shaved a few years off of my life, in my mind, spirit, and most parts of my body I still feel thirty-six. Regardless, I woke up this morning entering my sixtieth year of life, and though the wee hours of my birthday began with a restless Calvin suffering from some sort of pain, from my perspective—one in which I try to practice gratitude, even for the mundane—life still looks decently rosy.

That fact is a testament that we humans are resilient as shit, most of us able to handle the nasty curveballs hurled our way at different times in our life. I don't believe in the notion that everything happens for a reason and/or that God doesn't give us more than we can handle (I don't believe in that kind of god, anyway) because I have seen pain and anguish push people I love over the brink. However, I do believe there is a lot of good most of us can glean from bad things that happen to us. We can find the generous pluses, for instance, amid the scores of miserable minuses that a disabled child brings in the form of loss, guilt, despair, anger, resentment, heartache, suffering, pain, sorrow, hopelessness, envy, frustration, doubt. My sweet Calvin has brought me joy, love, patience, empathy and the rare chance to witness a life that, if it weren't for his physical pain, is as close to nirvana as any human might hope to get.

I have learned from Calvin how trivial material desires can be, how petty some quarrels are, and I am getting better at understanding how little it matters that he can't run on a cross-country team, can't speak two languages—much less one—can't excel in math and science, can't work a computer, can't even trick-or-treat. Daily, I hear stories of children—and their parents—who deal with seizures or hunger or pain or disease far more heinous than Calvin's circumstance. And I feel so grateful that Calvin is simply warm and dry and safe and mostly happy and living with a forever-evolving sixty-year-old mom who feels twenty-plus years younger, and still feels up to taking on the world.

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!