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.
calvin's story
From motherhood to justice.
calvin's story

5.24.2025
daymakers
4.27.2025
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.
4.04.2025
rock stars
3.18.2025
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.
1.08.2025
reminders
10.29.2024
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.
5.05.2024
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?