daymakers

Saturday before last, I headed north two hours in torrential rains to the Sugarloaf Marathon and 15k with my trusty copilot, Katie, to stay at my dear friend Joanie's condo for an action-packed 26 hours.

I felt really good physically and managed to hold a decent pace for the mostly-downhill course. I placed second in my 60-64 age group, top 10% of women and top 19% of all runners with a time that was just 0.06 seconds slower than last year's time! Crazy!

 

After the race, it was fun to yuck it up with Katie and two other dear friends, Michael Millet and Rob Ashby (and his nice brother), all of them whom I might call "daymakers."

 

But one of the best parts of the afternoon was when a handsome young man approached me to tell me that he had run with me for most of the race and that I kept him going strong. 

 

"Did you cream me at the end?" I asked him with a smile (mile eight was a bitch.) He humbly confirmed my suspicion and we laughed.

 

It seemed as if today might have been one of his first races. He said that he did well because I inspired him, and that he had consciously sought me out to tell me that. He wondered if I had noticed him, so I asked him to take off his hat and i realized, upon seeing a crop of thick, shiny, black hair, it was the guy who I had jockeyed positions with for the entire race.

 

Upon hearing his very heartfelt sentiments, I gave him a huge bear hug, which he warmly returned. I asked his name, and he told me, "Aimun." he took down my name and said he'd find me on Facebook. I found him first (surprise, surprise)!

 

Aimun said he was there with his wife, who had run the marathon, and his parents, motioning to the three standing behind me. I ran to them and hugged each one of them, expressing how meaningful his gesture was to me. We visited for a while and I learned that his wife is running the Boston Marathon next year. I asked him when his next race was, and he thought it might not be until Sugarloaf next year! I said "that long?!" and everyone laughed. I suggested he try the Beach to Beacon 10k, and then went on to tell them all about its founder, my dear friend, Joan Benoit Samuelson, since they had not heard of her. I told them she won the Olympic Gold in the women's first marathon in 1984 with a time of 2:24:52 (5:32 average pace!) and how her world record of 2:21:21 (5:24 average pace FORTY YEARS AGO) stood for twenty years!

 

When recounting this story to aimun and his family, I thought about how I had woken up this morning in Joanie's condo to a photo banner of her winning her Olympic Gold.

 

I'm still basking in the afterglow of the beautiful, fun-filled race, which ran along the Carrabassett River, of the chartreuse leaves beginning to unfurl, of the waterfalls cascading between craggy rock walls, of the amazing volunteers handing out cups of water, of fans ringing cowbells, of the hundreds of athletes of all sizes, shapes, races, ethnicities, and ages, of the generous spirit of people like Aimun and my buddies, and of the scenic drive home.

 

It was a perfect mother's day, mostly void of thinking and angsting about Calvin (which is one of the reasons running is so essential and precious to me) complete with slow-cooker salsa verde chicken made by my awesome husband, and a rare cold-shoulder from my sweet child who, like it or not, didn't appear as though he knew I'd been gone!

 

encounters

yesterday, on calvin's second to last day of being mostly home with me for all but two of seventeen days, it rained like hell. i loved every minute of it.

after my shower, i crawled back into bed for part of an hour to read my novel, ann patchett's, "tom lake." since calvin's birth twenty-one years ago, i can't remember a morning ever crawling back into bed with a book—always some task to get done or somewhere to go. but the dark sky and driving rain on our red metal roof beckoned me to bed, and, calvin safe and serene in his own, i let myself succumb.

in her novel, "tom lake," patchett describes her relationship with her three grown daughters, all in their early twenties, who have come home to their childhood cherry farm during the pandemic. it's a gorgeous and absorbing read, and was nice to take a decent bite out of it instead of my usual page or two before falling asleep at night.

once the rain began to ease some, i loaded calvin into the car for our daily back roads car ride. we went to the point, parked facing the bay, and listened for fifteen minutes to rock and roll as the rain washed over the car. we were warm and dry with a fantastic view, at least for a spell. backing out, we passed a couple of parked cars in the turnaround. i glanced into one and flashed a broad smile at the pretty, young driver, a college student probably, who returned my grin with a sweet one of her own.

as i drove down the lane toward town, my eyes began to sting and brim thinking about how i might have had a daughter just a couple of years older than her if i hadn't miscarried. i was pretty sure i was carrying a girl the year before i became pregnant with calvin. i continued to lament the loss of what ann patchett describes with such beauty in her novel: the connection between a mother and her healthy, intelligent, thoughtful, curious, loving children, in this case daughters.

at the grocery store, calvin and i met again with kind friends and strangers, and i cashed in on copious, long, and sweet embraces from my son.

later in the day, calvin and i returned to the point, which is ever-changing in its beauty. on our way down simpson's point road, i pulled aside and put my hazards on to take photographs of the dripping forest flanking the shiny tarmac. a truck and trailer slowly pulled up aside me, and the driver rolled down his window, so i rolled down mine.

"is everything all right?" a white-haired man in a carhart-style jacket asked.
"yes, thank you! i am just taking photos of the trees."

the man, seated next to an attractive similarly-aged woman with a german shorthaired pointer puppy in her lap, seemed confused.

"of what?"

and so i held out my phone for him to see my most recent capture.

i explained that i drive to pennellville and the point every day with my disabled son, calvin, who can't do anything by himself. i rolled down the back seat window so he could see my son, and the man said, "hello calvin!"

i went on the describe how i first began taking drives out to pennellville during the pandemic when calvin didn't go to school or the grocery store for fifteen months, and so the only thing we could really do was go for car rides. i told him about all the locals i had seen often on those drives—lynn and john, john the dog walker, brenda and ruby, ashby the marathoner—and how i eventually introduced myself and calvin to each of them once it felt safe to do so. i joked to the man about how my husband calls me the mayor of brunswick because i know so many people. the couple chuckled, just as i became aware of how the pandemic strangely enriched my time with calvin, not unlike the characters in pachett's novel.

"would calvin like to see a puppy?" the woman asked, and i told her he probably couldn't see it since his vision is so bad, and that i wasn't so sure he'd be interested.

"oh, you're the kennel owners!" i exclaimed, having seen their roadside sign for years. "i've seen you and your dogs in the field!" gesturing in the direction of the grassy expanse on pennell way and mentioning how i often run out here in training for races, including half marathons.

"yep, that's me!" the man replied, perhaps with some healthy pride of his prize hunting dogs.

before we parted, i introduced myself and gave the man my card with an old photo of me and calvin on the front and my blog and email addresses on the back. the man's wife reached into her purse and fished out a card to give me.

"thanks for stopping," i said, "you probably got more than you bargained for!" and the couple chuckled again.

"next time you see me, please say hello," i asked.

"oh, we will!" then they said goodbye to calvin, who seemed oblivious, albeit very content, in the back seat as he gnawed a shiny blue rubber chew toy.

and as i drove off after having had such a positive, relaxing day, full of beauty, love, and cameraderie, i had a feeling of great satisfaction, happiness, and hope for this crazy world.

rock stars

the grocery store employee, whom i recognize but have never spoken to, waved at me and calvin from afar as he made his way toward us in the deli section.

 

he greeted us warmly, perhaps with the very slightest slur, "i see you guys every so often, but i don't really know you."

 

"that's because we are here every day!" i replied with a smile.

 

he had been on his way to grab lunch from the deli after having already punched out. i asked what he was hoping for.

 

"chicken tenders," he replied with the excitement of a child.

 

"what's the difference between chicken tenders and chicken nuggests?" i wondered.

 

"chicken tenders are way better. they're crispier!"

 

he asked for calvin's name, and seemed surprised when i told him. i asked him his in return, and he recited his full name, including middle initial. i wondered aloud what the middle initial stood for. he said, "allen," then went on to tell me that his mother named him after alan alda from the t.v. show M.A.S.H, because she wanted her son to stand out.

 

"you do stand out!" i exclaimed, adding, "grocery store employees are kind of like rock stars—everyone knows you!" and i was thinking, too, about how calvin is a rock star.

 

he agreed, relaying to me that, outside of work, strangers come up and talk to him all the time because they recognize him from the store. i jokingly asked if they ever want his autograph, and he laughed.

 

i told him my first and last name, adding that a friend of mine teasingly gave me the middle name of "sure can." then, in unison, we both said my full name, including my made-up middle name. i'm not sure he got the joke, but i had to chuckle anyway.

 

the nice man went on to tell me about some of his medical conditions and the meds he takes to treat them, at one point whispering the name of one of them. sadly, i'm familiar with all of the meds he mentioned. then he told me what would happen if he didn't take them.

 

he asked if calvin could ever have a job, adding that he may not be able to because calvin is nonverbal. i informed him that calvin has other limitations which prevent him from working.

 

the man marveled to me about his own openness and sharing, saying something to the effect, "i've never told anyone so much stuff about myself before."

 

i mentioned that, over the years, many people have told me that very same thing.

 

"maybe it's because you're so easy going," he said, which, unbeknownst to him, is one the best compliments anyone could give me considering the shit-show of a life i sometimes feel like i live, what with a man-boy as complicated, enigmatic, worrisome and difficult to take care of as calvin.

 

i beamed.

 

as we neared the meat case, the man mentioned he had been to spain and had seen a bullfight in barcelona. i told him that i had traveled to spain, too, many years ago, and had seen a bullfight in toledo. he told me his last name is german. i said calvin's last name might be german, also. he told me his age, and i told him mine.

 

"i never thought you were sixty-one," he said. i think (and hope) he meant i seem younger. haha!

 

we visited for a good ten or fifteen minutes as the man followed us along toward the dairy section, getting to know each other, and agreed finally that we have a lot in common.

 

at one point, calvin, who was being pretty patient (partly because i had my hand clasped over his on the cart) turned to the man as if to hug him.

 

"he looks like he wants to hug you. would that be okay?"

 

"i don't mind," he said, and he embraced calvin in a full-on hug as calvin wrapped his arms around the man's neck and tucked his face into the man's shoulder.

 

"i appreciate you asking me if it was okay for him to hug me," he said. but i don't mind, it doesn't bother me."

 

before we parted, the man asked me not to tell his mother that the two of them sometimes get in arguments, then saying, "but that's probably normal for most people with their moms." i nodded with a smile.

 

"no worries, i won't tell her. i don't even know what she looks like."

 

and then he put his hand out to shake mine, and we did, and it was a strong, warm, confident shake, the kind i like. and then i said, as i do to all of my favorite employees as i leave the grocer, "hope i see you tomorrow!"

 

and, no, calvin is not taller than i am!

 

eclipses

this morning i had a little, pitiful cry in the shower. i was lamenting the fact that, in 2017 and/or 2019, i did not travel cross-country from maine to central washington state to attend my swim team's induction into our university's athletic hall of fame, particularly as its 1986 team captain the year that we won the national championship.

to be fair, any travel is difficult because of leaving michael alone to take care of calvin, which is no easy job even for two people. i struggled with the decision to attend the festivities and, in the end, decided to forego.

 

my sadness this morning was triggered by seeing photos of my female teammates at a recent, casual, mini reunion. i had not been included. maybe it was a last-minute get-together for the locals. perhaps they figured i couldn't/wouldn't attend because of calvin and distance. maybe, since i didn't join the team until my junior year and always felt like a bit of an intruder (i fault myself, not them), i may be an afterthought. but i don't think that is the case; a handful of these women, including two who were also my childhood friends, have shown me great attention and affection over the years. in any event, had i been included, i don't know if i would have pulled the trigger and gone.

 

as my tears mingled with shower water, i realized i was grieving something bigger than missing reunions. i was grieving my inability to experience so many of life's offerings, or to feel an integral part of anything much since calvin's birth, with the exception of taking care of him. he has acted as a kind of eclipse of pretty much everything else.

 

calvin's conditions have overshadowed his and our lives, left us excluded, marginalized, isolated in myriad ways. his severe disabilities have blocked him from forging any friendships. he is incapable of participating in clubs, sports, bands, choir, or theater. as a result, i have not been the "soccer mom" on the sidelines. i have not hosted sleep overs. i have not been in the audience making bonds with his peers' parents over the fifteen years he has attended public school. don't get me wrong, i am friends and am friendly with many parents in our town but, with a few exceptions, mostly just in passing at the grocery store.

 

i also grieve how difficult, even impossible, it has been to engage in various activities with calvin. this morning, the bus driver asked me how my weekend was. well, it was the same mundane weekend as usual—spent driving around the back roads to our favorite vistas, and going to the grocery store with calvin (thankfully, i have grown to appreciate the mundane in many ways.)

 

most regrettably, calvin isn't interested in or cannot tolerate any number of pretty basic activities. he isn't interested in or capable of watching videos or movies, can't sit still for a restaurant meal, can't/won't go for even short walks in the woods or on the beach, immerse himself in a book, play with toys, sit still at a friend's house, or lounge in a park. he is difficult to travel with because of various limitations, including finding him a safe way/place to sleep.

 

over the last three years, calvin has thankfully had a gradual reduction in seizures (from over 100 per year to the low double-digits), which has helped me feel less paralyzed and more at ease about traveling (solo), as long as calvin is in school and when michael is not teaching. i have used this newfound "freedom" to go on a few short trips, to explore running, and to enter races a handful of times each year. i am grateful to have felt embraced by the running community and its members who are warm, kind, fun, funny, inspirational, supportive, and who share my love of the sport. 

 

but every once in a while i get caught feeling a gloom cast over me thinking about lost opportunities—the event i didn't attend, the vacation i forwent. i pine for the day when i can feel more of a sense of freedom besides just on my daily runs, infrequent races and less-frequent trips.

 

but the future is uncertain for calvin after his last day of high school next february. it is unclear whether he will be able to attend an adult day program without adequate funding for a one-on-one aide which he requires. it appears i may be taking care of calvin more instead of less as i age. i grieve the fact that michael and i may never enjoy the freedoms of being empty nesters (not that there aren't downsides of that for many parents), may never again be able to travel as a couple (the only time we have taken a trip without calvin was in 2012 when we spent 24 hours in manhattan), and we will never reap the benefits of being grandparents.

 

as i write this, with dry eyes, i understand that hindsight is 20/20, and i made what i thought were the best decisions that i was capable of making, under certain self-imposed duress, when i opted out of so many fun events. for now, all i can do is forgive myself and remember the circumstances. i will continue to try to reclaim my time, to participate when i can, to leave my comfort zone when possible, and to know that my little ball and chain will be okay without me for awhile when i feel the need to flee to brighter climes.

 

more so, i will continue to appreciate my husband for being such an amazing provider and support (especially in the kitchen and around the house!) and my close friends and family who are so attentive and loving, and who know i am doing my damnedest at the world's most important and impossible job of taking care of a beloved who can't take care of themselves.

 

moreover, at this time of political chaos, strife and uncertainty for too many people, i will be grateful for my husband's uber-stable job, for our cozy home, for having enough money for food and heat, for health insurance, our community, our friendships, and this beautiful, safe place called maine.

 

photo of me and calvin (trapped behind me for a spell) at last year's total solar eclipse.

reminders

daily, i am reminded of a life that could have been—for me and for michael and for calvin. daily, i must resist the urge to think, "what if" about a million and one circumstances: the lost conversations about life, love, the mysteries of the universe, that i might have had with my child. the lost moments of a proud parent watching their child excel at sports, theater, music, drawing, writing, art, science. the loss of seeing my handsome boy make friends and perhaps bring home a sweetheart. the loss of him going places on his own, whether just down the street to a friend's house, out to the point, or to another city or country. the loss of going for walks with my child on the beach or in the woods or up a mountain to linger perched on an outcropping or in the shade of a tree, just being still as the wind sweeps back our hair.

 

but none of this will ever be, nor will the particular joys that come from being a grandparent.

 

but, calvin has brought so many profoundly deep feelings, so much richness and love and heartache and meaning to our lives. and, when i least expect it, something simple he does—the way he looks at me or the smile on his face—or something we do together, like a pleasant trip to the grocery store, reminds me that what i am doing—loving and taking care of someone like him—is the most important, meaningful thing in the world.

 

autumn update

It has been far too long since I last posted, so I thought it was time to give you a quick update.

Calvin recently went nearly five months without having any seizures. A low-grade fever on October 1st triggered a breakthrough seizure, and then he had another seizure twenty-five days later. My hope is he will go back to having longer seizure-free stints, which I attribute to his use of the drug Xcopri (cenobamate).

In the past twelve months, Calvin has had only four seizures, which is down from fourteen last year, forty-plus in 2022, and over 100 in 2021 when he started taking Xcopri. So I have no doubt that the medicine is working to limit his seizures.

What has not changed is Calvin's impossible restlessness. I believe he suffers from a condition called Akathisia, which people can acquire from the use of, and withdrawal from, certain drugs. My understanding is that benzodiazepines can cause this condition, but we will be taking Calvin to a behavioral health specialist to see what they have to say. In the meantime, we struggle daily with Calvin's inability to sit still for minutes if not seconds at a time.

All in all, however, Calvin seems to be better understanding us and is more cooperative when we take him places to walk for short distances in less familiar places, which is a huge improvement over the stubborn boy who often insisted on trying to drop to the ground every few steps. I can only conclude that this improvement is due to having fewer seizures.

Another upside of Calvin having fewer seizures is that he misses less school, and when he goes to school I have the freedom to go for long runs between ten and fifteen miles, which I love for the mental and physical health benefits those runs offer me.

That's all for now. Thank you for you continued concern, love and patience. I'll try not to be such a stranger.

after the bath

after fifteen and a half weeks of seizure freedom, calvin suffered a grand mal having just stepped out of a warm bath. he was standing at the sink as i dried him off and he went quiet. i watched his eyes become vacant, the blood drain from his face, and his lips become dusky. even though he can't speak, i kept asking him what was wrong. i felt for a rapid heartbeat, noted his slowing respiration, and then i knew what was coming. he let out the telltale blood-curdling howl, went stiff and began convulsing. i grabbed him around the trunk so he wouldn't fall, and i lowered him as he seized onto the small bath mat on the floor. i bunched the mat up under his head, cupped one of my hands under his bony knees, and wedged one of my legs under his ankles so he wouldn't bang his head and bones on the hard tile floor.

when it was over i was able to get a pull-up on him and some sweat pants and a long-sleeve t-shirt. he was limp as if he were drunken or unconscious. i had to hold him under his armpits and drag him down the hallway to his bedroom. there, i was able to get him into a floppy standing position so that i could pick him up under his shoulders and knees to carry him a few feet to his bed to drop him in.

i'm grateful i have a have a strong body, and that i have continued to practice lifting his shy 100 pounds just in case something like this were to happen. he's sleeping now.

yesterday, calvin spent most of the day with his fingers in his mouth—not a good omen. he's been out of sorts more often these past few weeks. he didn't seem to want to take a bath, but he needed one badly. i wish i had "listened" to him.

i fear my sweet boy will have another seizure today or tonight; they often come in clusters. i fear he will not regain the long stretches between seizures that he has enjoyed this past year. he has been doing well lately. i am feeling despondent.

send us some good mojo, will you?

little celebration

Today marks eleven weeks of seizure freedom for my sweet son Calvin. It isn't his longest stint ever; that record was nineteen weeks long—or nearly four and a half months—in the late summer of 2022. But I think this is one of his top three or four longest stretches without any seizures since he first began having them when he was just eighteen months old, shortly after he said "mama" for the first and only time in his life.

Long seizure-free stints usually mean Calvin misses very little school, which means I have more time for myself to do what I want and need to do. Moreover, I'm not racked with anxiety and tension looking over my shoulder all day long just waiting for the next frightening seizure to strike. To be mostly rid of that feeling is liberating to say the least.

It's also notable that Calvin has seemed very content and happy for several months. He is still uber restless due to the akathisia he suffers because of other epilepsy drugs, namely benzodiazepines, which I believe permanently harmed his developing brain.

But that Calvin smiles—when he gets on and off of his school bus, when he enters, makes his way through, and exits the grocery store, when we put him to bed and smother him with kisses—is not something that I take for granted. I remember years when I rarely saw Calvin smile, back when he was reduced to a little zombie, his brain awash with heavily-sedating drugs. I feared he might never smile again.

Calvin is also sleeping better these past several months, sometimes as long as twelve hours. He does still sometimes wake in the middle of the night and might have trouble getting back to sleep, but more often than not it is my impression that his sleep is fairly sound compared with in the past.

So, with all this in mind, I am having my own little celebration today—of Calvin's seizure-free stint, of spring, more daylight, and Calvin being easier and more enjoyable to take care of in a myriad of ways.

Calvin wearing his cool hand-me-downs

realized dreams

A week ago last Sunday I ran the New York City Half Marathon, which starts in Brooklyn's Prospect Park, goes across the Brooklyn Bridge, along the East River, up 42nd Street, through Times Square and finishes in Central Park. It was a challenging course with long hills, and though I missed my goal time by several minutes I was satisfied with the outcome. I placed 18th of 370 in my division (F60-64) with a time of 1:51:43 (8:32 average pace), placed in the top 15% of all women and the top 27% percent of the entire field of American runners. I could not have done it without the love, coaching, advice and support from so many of my athletic and non-athletic friends and loved ones.

More importantly, with the help of scores of generous donors, I raised nearly $15,000 for the American Cancer Society for research, patient support and outreach!

As I raced with 27,000 other runners from all over the world, my mind wandered little as I focused on my stride, breathing, and the scenery and people around me. I didn't think about Calvin except perhaps once as I glided smiling through Times Square thinking I was in ways running for him—something he has never been able to do nor will ever do.

And though Calvin wasn't on my mind during my race—nor is he much if at all when I go on my daily runs—I realized after I crossed the finish line that if it weren't for Calvin, perhaps I'd never have taken up running in the first place. When I was pregnant with him I had swum at least a mile every day until week thirty-two when Michael and I got the harrowing news that our unborn offspring was missing much if not most of the white matter in his brain. I had to give up swimming and walking our dog until after Calvin was born. When I eventually got back into the pool, the heartache, guilt and uncertainty proved to be too much for me. I feared my workouts might have hurt Calvin's brain somehow, and I couldn't help but cry into my goggles and hope no one noticed.

Then in stepped my friend, world-class marathoner and Olympian, Joan Benoit Samuelson. Upon first meeting, she quickly disabused me of any notion that my swimming might have harmed Calvin's brain in utero. Still, I was no longer interested in doing lap after lap indoors. Years later, after prodding me to take up running, Joanie gave me my first pair of running shoes—Day-Glo yellow Nike Zoom Fly 4s. Her gift came on the heels of having spent the first fifteen months of the pandemic watching another elite marathoner run the same back roads on which Calvin and I took daily drives, all the time wishing I could do the same. It was then, just over two years ago, that I began running in earnest and training for my first-ever race—Joanie's Beach to Beacon 10K—after years of mere dreaming of having the time and freedom to run.

And though I am no fan of the saying "everything happens for a reason," I'm a staunch believer that, if we so choose, we can find great purpose and deep meaning from life's challenges, tragedies and accidents. For that knowledge and capacity, I am forever grateful.

Running through Times Square

sunday update

Sorry it has been so long since I've written, but in this case no news is (mostly) good news. Calvin is still up to his usual antics—drooling, biting every surface possible, putting his hands in my face, grabbing me, at times dropping down in stubborn refusal. Good news is he has gone almost eight weeks without any seizures. Since starting a drug called Xcopri over two years ago, Calvin has had several long seizure-free stints, one of which approached four months. In that time we've been able to reduce his only other epilepsy medication. He is still very restless during the day, and I am weighing whether to put him on an ADHD drug called Intuniv, which his neurologist recommended. But, despite his restlessness, for months he has been super sweet, loving, compliant and smiley, and it is hella fun to bring him to the grocery store every day and to take him on long relaxing car rides which we both relish.

Sadly, I accidentally shut Calvin's pinkie finger in the car door and broke it at the very tip a couple of weeks ago. We got his hand x-rayed and saw the orthopedic surgeon who told me that my instinct not to splint Calvin's finger to the adjacent finger was a good one since Calvin clenches his fists constantly. Hearing that relieved me. When he gets hurt I feel physically sick, like when he got his hip (femur) broken at school two years ago because of a couple of complacent and neglectful aides, and when he suffered ungodly pain from gallstones. Poor Calvin has to endure so much.

But going longer between seizures is something huge to celebrate. It's not only good for Calvin's brain but it means that he doesn't miss nearly as much school, which is good for him and for me (he's got a new teacher and new aides.) I've been spending my time when he's in school running, a sport I began in earnest just over two years ago. I've enjoyed some small and fun successes—5k, 10k, 10-mile, half marathon—and met some lovely people most of whom have become friends. For the past several months I've been training for the New York City Half Marathon, which is a week from today! I am running as a fundraiser for the American Cancer Society in honor of my father and so many others, and my goal is to raise $15,000 by next Sunday. I am very close to achieving that goal. If you'd like to donate to my campaign, now is the time and here is the link:

https://secure.acsevents.org/site/STR?fr_id=107942&pg=personal&px=59415756&fbclid=IwAR290O6lgFUYarnIuf8e2imKq1Ae1mMiGgJfn_s4OfpChy3P-SDZ-6P3uVg

Right now, Michael is on a two-break from teaching. In late May he begins a year's sabbatical, during which he will be attending a couple of artist residencies and working toward publishing his fourth photo book. We continue to enjoy his amazing dinners, most all of them recipes from the New York Times. I'm still making my famous salad every single night. We've hosted a few small dinner parties and have been guests at a few, too. Gathering with friends is a good distraction from caring so hypervigilantly for Calvin. And, Mary, Calvin's former school aide and buddy, has been helping us take care of him a little, as well as Caroline who is another good aide we recently found.

Suffice to say I feel very grateful these days that some things have figuratively calmed down with Calvin, who has just under two years left at the high school. In the meantime we have to figure out what the hell we are going to do with him after he "graduates" since most programs do not fund one-on-one care, which is essential to Calvin's safety.

So that's it in a nutshell. Thank you all for your love, interest, concern. I'd love to hear from you.

twenty

I have heard parents say that one of the happiest days of their life was when their child was born. Not so for me and my husband, Michael.

The day Calvin was born and the two weeks leading up to his birth were filled with much fear, anxiety and sorrow, the twisted emotions of both hope and a sense of peril which we still sometimes feel.

At thirty-two weeks gestation, a fetal sonogram had revealed a significant absence of the white matter in Calvin's brain. In the wake of that finding was a trip to Boston hospitals for back-to-back appointments with radiologists, obstetricians and neonatologists, more sonograms, blood draws, a fetal MRI, and a midnight IVIG (intravenous immunoglobulin) for me.

A plan was made to deliver Calvin at Boston's Children's Hospital via cesarean section at thirty-five weeks to increase his chances of being able to breath on his own. A neurosurgeon and donor platelets would be available in case Calvin suffered hemorrhages in his brain and needed a shunt.

But Calvin began making his way into the world on his own a week earlier during an ice storm in Maine. Medevac helicopters had been grounded so we had no way of getting to Boston where specialists knew every detail of his case and were ready for him to come.

From our town's Midcoast Hospital I was transferred to Maine Medical Center, and since there were no matching donor platelets available, I underwent a forty-five minute pheresis—while having mild contractions—to extract my platelets in case Calvin needed them to stop a brain bleed. The pheresis left me with too few platelets to get an epidural without the risk of bleeding into my spine, so I had to go under general anesthesia. Since I would be unconscious, the surgeon would not allow Michael into the operating room, so, most regrettably, neither of us saw Calvin being born.

Calvin spent a week in the neonatal intensive care unit, the first sixteen hours of which he was on a respirator before being put on a C-PAP. He spent another two and a half weeks in the Maine Med continuing care nursery while I stayed restless nights at the nearby Ronald McDonald house and Michael commuted daily to and from work since at the time the college offered no parental leave for fathers. When Calvin was stable enough, we transferred to Midcoast Hospital where Calvin and I boarded in the labor and delivery ward for another three and a half weeks before bringing Calvin home for the first time.

The last twenty years have been a roller coaster which has only recently felt as if it might be slowing down and leveling out a bit. It has been a stream of doctors and nurses and phlebotomists and surgeons and therapists and needles and intubations and bruises and broken bones and surgeries and pneumonias and seizures on top of seizures on top of seizures and drugs after drug after drug and side effects ad nauseam. It has been full of grief and loss and worry and shrieks and tears and laughter and some joy.

And though Calvin has been ridiculously difficult to raise for all the reasons I've stated, and though we suffer daily the loss of what we thought parenthood might promise, it is in great part because of Calvin that we live an intensely rich life; we feel the myriad of human emotions—the joys, the sorrows, the regrets, the hopes—more profoundly than we might have, we believe. Because of Calvin, we have met hundreds of extraordinary people—doctors, nurses, therapists, educators, aides, mothers, fathers, strangers. Calvin has helped me to understand that this mundane thing I do, which is to feed him, bathe him, clothe him, change his diapers, wipe his butt, nurse him, is the most important thing in the world: to take care of another human being. And though I regularly fail, he inspires me to try to do it with grace and patience. He allows me to forgive myself when I falter. He loves me unconditionally. He is pure of heart without a mean or resentful bone in his body. And although I don't believe for a nanosecond that everything happens for a reason (I cannot believe in any divine or universal design or being that would make or allow a child like him to suffer so badly) he has given me great purpose and I hope he inspires empathy in others.

And so, although I would always wish for Calvin to be healthy, to be free from suffering, free from seizures, drugs and their heinous side-effects, be able to speak, read, write, sing, run, play, I can wholeheartedly say that my Calvin is the best person I know, and that I am deeply grateful to be his mother and to celebrate his birth even though it was so hard on me and Michael.

Happy birthday, baby. What a crazy twenty-year roller coaster ride it has been.

love at the grocery store

Most days I take Calvin to the grocery store. It's one of the few places he seems to tolerate and perhaps even enjoy. He smiles on the way in and on the way out and a little in-between. He stares at the florescent bulbs above the produce case. He pats any crinkly plastic wrapping. Though he can't steer it, he pushes the cart but sometimes lets go and stands in place for no apparent reason. Despite my attempts to thwart his efforts, he too often licks the glass doors in the dairy section. He tries to bite the metal shelving. Then he gives me copious hugs in the checkout aisle.

On most trips to the grocer we have some lovely encounters with friends, employees, and strangers. Sometimes, children will stare at Calvin in wonder. Often, adults will avert their gaze when they see us coming. Usually, elderly people smile as we amble by. On more than one occasion people have tried to give us cash, probably because they feel it's the only way they can help a mother with such a severely disabled child.

Today was an extra-special day at the grocery store. After I pulled into the handicap parking space, grabbed a couple of reusable bags and a small cart, I saw an acquaintance. We said our hellos and our nice-to-see-yous as I wrangled Calvin out of the back seat. My friend and I caught up on various goings-on. I told him that we go grocery shopping almost every day, and how pushing the cart seems to make it easier for Calvin to walk, mentioning that the spring before last Calvin broke the femoral head off of his femur—in essence broke his hip—at school. I described how Calvin's one-on-one aides neglected to assist him as he walked around the room and attempted to sit in a chair, which he ultimately missed, causing him to fall and break his hip. My friend was clearly alarmed and upset to hear this and to understand that it's possible and even likely that Calvin suffers chronic subclinical pain from the injury and the three screws in his hip. Then, I asked my friend how his business is doing, knowing the hardship he faces keeping it afloat amid staff shortages and other stresses. There seemed to be a tacit understanding of each other's struggles, a feeling which, at least for me, felt good to share.

Once in the store, as my friend and I parted ways, he said, "You are beautiful." I replied, "You are too!" as my eyes began to brim with tears of gratitude.

Calvin and I continued on and made our way through the produce department as he pushed the cart while I steered from beside the front end. As we rounded the corner from the bakery to the cold cuts, I looked over my shoulder to make sure he was still holding on. Lo and behold, he was still walking but his pants had fallen down around his ankles! Just then a man perhaps a bit older than I approached from behind. Slightly embarrassed though still amused, I said, "Oops!" as I pulled Calvin's pants back up and tied them as quickly as I could.

The man then said to me with a very slight slur, "I had a stroke three months ago and I still have double vision sometimes."

I asked, then, if he had seen Calvin's pants down. He said he had, adding with a grin as if to lessen my embarrassment, "It's America!" I laughed good and replied smiling, "Yes, it sure is!" We exchanged some niceties then went about our business.

Soon after, I saw the man in the dairy section. As we stood near the yogurt, Calvin licking the glass door, he told me more about the stroke he had had. He described how his beagle had saved his life by alerting him in the middle of the night that something was wrong, though the man had felt no pain. He said something to the effect that we all have our battles. He mentioned God and how everything happens for a reason, and I told him I didn't believe that, but that I do believe we can find purpose and meaning in life's unfortunate dealings, adding, "that is just as magical!"

The nice man asked if I was married, saying with a blush that grocery stores are about the only good places to meet women. I said I was, but assured him it was okay that he had asked, adding that none of us gets anything we want in life unless we ask for it. I gave him my card with a photo of me and Calvin on one side and my blog address and email on the back. He gave us blessings, and I asked that he say hello to us the next time he sees us in the grocery store. I hope he will.

And as Calvin and I left the store, random folks smiling at us as they walked by, I turned to look at Calvin, and there he was, still holding onto the cart with one of his cute goofy smiles for all to see. And it was beautiful, and magical, and I fell in love again.

precious notes from friends

I'm writing from Italy, today the sky was crystalline blue, the sun was warm, autumn leaves astonishing. I can’t do anything to avoid your suffering but I'm sharing today's sky with you.

—Near Milano, Italy


This feeling of paralysis comes over me every time I read your blog. I first came across it after my sister met you somewhere. I'd been curious about Calvin for a long time; I often look in on your husband's photo blog and had seen the photos taken at some big city medical facility and then I got to see Calvin in real life at his school.

Reading it overwhelms me and grinds my thoughts to a halt. The only thing that penetrates my stupor is a sort of vague feeling that I need to be less impatient with my own kids, or that I'm not doing something right with them ... or wasting my opportunity with them. It's very unsettling. I make it worse by reading several posts in a row.

I mean this as a reflection on me, not as a criticism of your writing.

I recall watching Calvin's bus driver kiss him on the top of the head after she'd turned him over to one of the school aids at drop-off time. It made me feel good that that particular woman had the job.
 
—Brunswick, ME

I've become increasingly amazed by whatever it is that goes on between a mom and her child—an instinct, a bond.  I was totally unaware of it when I was a kid.  As a matter of fact,  in recent years whenever I talk to my mom (now 95) I begin by apologizing for all the crap I pulled as a kid.  I didn't really start to notice until my son got sick and I saw it in my wife.

—Santa Monica, CA


Living every day as if it were your last or the last day of someone you love is a completely exhausting way to move through the world. And yet it is, it seems, the only way.

—Santa Fe, NM


The condition of imagining the place and perspective of the one who is seemingly just beyond the place of ordinary understanding... just beyond the reach of my love and spiritual communion, the one who knows that she loves me but hasn't the foggiest clue who I am... is perhaps the greatest of all existential challenges. Spinoza and Camus have nothing to offer us here by way of wisdom. I have less than nothing to offer by way of wisdom... nothing that I would offer as advice but to tell you that the soul of the one afflicted is never afflicted. The thing that is true about any of us is true of all of us. From the most gifted to the most challenged: we are here...

—New York, NY


And there is a kind of arrogance, a very particular kind, that comes with the possession of good health...a superstitious arrogance...that regular types can only see and appreciate when they exit, for a spell, that lucky realm.

—Roswell, NM
 
 
Christy, Christy, Christy, I wish I could put my arms around you and give you a big long hug.

—Sammamish, WA

 
I realized that some children are born sick and some die - there's no way around it, it's part of life. Even more than healthy kids, sick kids need very special caring and love—and why shouldn't we be parents of one of them?? Why should we be exempt? Why should another family have to bear the burden and not mine?

—Darien, CT


Happy New Year back to you....
from an errant friend....
from one caught in the web of limited time....
from one who selfishly gives to his kids & family....
who then gives to those intertwined therein in an expanding circle...
who takes his time when he can, too oft on the edges, which are becoming too thin....

but a glimpse of wonder,
a moment of peace,
the taste of calm,
too passing & transient to hold--
but lasting & strengthening for those edges
which I hope will hold,
for my family's sake,
or my friends.

You pass my mind more oft than my fingers linger here,
and with the passing, a smile & a blessing sent....
for you, and Calvin, and the family you hold dear.

—Silverdale, WA

hurricane force

When running I almost never think about Calvin. It's my worry-free, angst-free, stress-free, un-calvin-centric time, and it's good and healthy and fun for me.

 

But on yesterday's 8.5-miler, as it rained like hell, and gusts up to 50 mph lifted and pushed and tossed me, I thought of Calvin and of how he does the very same thing to me. And I thought of this gorgeous poem written by a mother of a child not unlike mine, and of this time in Florida thirteen and a half years ago when Calvin was six and a half and when we could more easily take him places because he was not impossibly restless. And I thought about how the beachwind and the surfsounds and the sea and the heat and/or some unknowable suffering—and most likely an oncoming seizure—was upsetting him and, as always, it killed me to see it, to feel it, while simultaneously experiencing the luxuriousness, power and love of this particular kind of messy motherhood.

 

If nothing else, Calvin has, does, and will change me. He makes me feel alive, and feel joy and sorrow and so many other human emotions deeply, and that is some kind of amazing gift to be grateful for.

Gentle Spirit

by Jan King 

 

A gentle spirit has come into my life

To make me see things I did not want to see,

To make me feel things I did not want to feel,

To teach me things I did not want to learn.

This gentle spirit has hurricane force

That picks me up, turns me this way and that,

And puts me down softly in a new place,

Always a new place.

 

I cannot return to the safe warmth I once knew,

It is gone forever.

Because of this fragile, gentle spirit,

Joy and sorrow have become intertwined

In a fiber of life that few can comprehend.

Because of this sweet, gentle spirit,

I can appreciate what is often assumed.

 

on running

A little less than two years ago I began running in earnest for the first time in my life. My dear friend, Olympic gold-medalist and world-class marathoner, Joanie Benoit Samuelson, knowing that I had once been a division I swimmer, had been asking me for years, "When are you going to get back into the pool?" and, "You know, swimmers make good runners." 

I had long lost interest in swimming for fitness, in doing lap after boring lap despite how good my body felt moving swiftly through the water. But I was desperate to feel like my former athletic self. More so, I pined for an escape, a respite—even if only fleetingly—from the responsibilities of taking care of my autistic, disabled, chronically ill child, Calvin. I yearned for something to occupy my mind besides the worry, anxiety, frustration and disappointment that loom too large caring for someone like him. I needed something that was wholly mine. 

For the first fifteen months of the pandemic—before Covid vaccines were developed—we didn't send Calvin to school, didn't take our usual outings to the grocery store, and had given up our in-home nursing help. To pass the time, Calvin and I went for daily drives on the nearby backroads taking in the beautiful scenery and listening to music. On our drives I often imagined pulling over, getting out of the car and running into the vast meadows just to lose myself. It was during our drives that I spotted an ambitious and wicked-quick runner who glided for miles and miles even in the harshest weather. I wondered what compelled him to run so far, wondered if he, like me, felt driven to run from some sadness, burden or worry, toward some kind of reward, or perhaps a little of both.

A year later, Joanie gave me a pair of fancy running shoes in exchange for an ice cream cake I had made for her husband's birthday. That was the moment I knew I had to commit to training for her world-renowned Beach to Beacon 10k, which she founded in 1998 and in which she had urged me to participate. It would be my first road race ever, and one that would get me hooked on the sport and on competing again.

Since that first race in August of last year, I've competed in four 10ks, three 5ks, one ten-miler, and a half marathon, which was in early October. I've enjoyed some small successes. Mostly, though, running has done for me what I hoped it would. I feel like my old self again in many ways—more light and lithe and spry. I'm healthier and happier. My capacity to endure my son's troubles has, perhaps, expanded. I think—hope—I'm a better person, friend, wife, mom. I've befriended some sweet and amazing people whose generosity, expert advice and encouragement has been essential to my accomplishments.

Getting out on the trails and roads, especially at my beloved Pennellville with its big sky, open fields, and expansive views across the water has been cathartic. I love to feel the sun and rain and wind—and sometimes snowflakes—on my face.

The one downside, however, is that I've been writing a lot less. Notably, though, when running, I almost never think of Calvin (and therefore I don't feel at all stressed or anxious.) I hear only the sound of my breathing and my feet striking the ground, the swish of my jacket, the song and chirp of birds and crickets, the babbling of brooks. I smell the sweetness of fresh-cut grass, clover, rose rugosa, smoke from a wood stove. I smile and wave at passing runners, bicyclists, truckers. I drink in whatever Maine has to offer on any given day throughout the year. I lose myself. In short, I finally have a time and place where I feel free.

Last week I signed up for the New York City Half Marathon in March with the hope of running with 24,000 other athletes over the Brooklyn Bridge, up Seventh Avenue and into Central Park (thanks to John Blood for that recommendation). I qualified for the event, but I missed the cutoff date for the guaranteed timed entry, so I'm hoping to be chosen in the random lottery which is at the end of this month. Cross your fingers, knock on wood.

I'll be forever grateful to the many lovely people who have brought me to this sublime place called running: my father, our family's original athlete who ran a 4:28 mile at the Naval Academy in 1948; my husband, Michael, who has been running four or five fast 5ks every week for nearly a decade; Joanie Benoit Samuelson, for urging me on for so many years; Rob Ashby, marathoner extraordinaire, who unwittingly inspired me to go the distance, and so many others since who have inspired, supported and encouraged me to keep on trucking. Thank you.

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.