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

6.09.2023
maddi
5.22.2023
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.
5.15.2023
mother's day
Mother's Day cards and gifts will fade or be thrown out, get packed up into some anonymous cardboard box in the basement or be lost in moves. Flowers will wither, balloons will deflate or sail away, plants will one day die. But these memories I have cuddling with Calvin will last forever, if not always in my mind, then in my heart, in the marrow of my bones, and mean more than any bit of material evidence I could glean from a son on Mother’s Day.
At least that is what I tell myself.
4.30.2023
joy of sport
i began swimming competitively at the age of six. in high school, i earned all-american honors as the lead in the washington state champion 400 freestyle relay. later, i was voted most inspirational and, as a senior, team captain. i then went on to compete for the university of washington (NCAA division I) and central washington university (NAIA) where i earned academic all-american honors and was voted team captain the year my team won the national championship.
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caught in the downpour! |
4.21.2023
catching a breather
run—away, to, from, for something. feel alive. free. breathe. fly. skate. soar. smile. wave. weep. see—oceans, vistas, trees, owls, ochre leaves. smell hay, clover, salt, goats, sea. anticipate. hope. vibrate. sting. ache. forget. dream.
i've been trying to do all the those essential things, to take my own advice so i can do more than merely survive, but so i can thrive amid caring for someone with so many basic and dire needs as my son calvin.
but in reality, calvin, his caregiving, his advocacy, have always gotten in the way, which is why i haven't written in a while. i'm really sorry! i've been dealing with reams of calvin-related paperwork, a struggle with his school district over the problematic shift and significant cutback of his summer school, his ongoing doctor's appointments, blood draws, and diagnostic imaging meant to follow up on his previously broken hip, his pneumonia, his gallstone(s), and the placement of a stent in his pancreatic duct during an Endoscopic Retrograde Cholangiopancreatography (ERCP) procedure last month. but i finally found the time to catch a breather and write.
since calvin's ERCP, he has been doing pretty well. he hasn't had waves of that excruciating pain that landed us in the hospital on New Year's Eve, nor has he had a seizure in forty-one days—his second-longest stint in what is probably close to a decade! he seems to mostly be in good spirits, and is sleeping fairly well. he takes moderate doses of two newer anti-seizure drugs, xcopri and briviact, and i have cut his thca cannabis oil dose in half without any problems.
so, too, calvin's receptive communication seems to be improving. his ability to "tell" us what he wants (a bath, juice, to go outside, to get on the bus or go for a car ride) is also better. though it's not easy or fun, i'm focusing more on his profound autism, and looking for ways in which we can work on improving his problematic behaviors to make it easier for everyone to take care of him (i'd like to simplify his treatment).
as for my own personal non-calvin-centric endeavors, i've been running a lot and training for my first ten-mile road race, which is this sunday in portland, maine. i'm hoping for good things. i'm hoping it doesn't rain, though that isn't looking very promising. i'm hoping for a fast time. i'm hoping to see friends and meet new people. running has been a savior and helps make my life feel more okay.
and so, since i often feel like i need a break, a respite, a lifesaver, i'll hopefully be able to keep running and smiling and waving and weeping and, as often as possible, dip into nature to soak up all it has to offer, forget all the rest, and continue to hope, vibrate, sting, ache, forget, dream.
3.11.2023
weekend update
At 3:30 this morning, Calvin had his first seizure in three weeks. Since beginning the drug, Xcopri, in November of 2021, he has been enjoying "longer" stints, including one seizure-free span of forty-five days. We haven't seen any focal seizures for over a year. So, despite a trip to the emergency room last April when he broke his hip at school, then having to undergo surgery to install three metal screws to fix it, and despite another trip to the emergency room on New Year's Eve for an excruciating case of cholelithiasis (gallstones), plus gastroenteritis and aspiration pneumonia, Calvin looks to be heading for his best seizure control in years.
As far as the gallstones go, Calvin had an endoscopic retrograde cholangiopancreatography (ERCP) procedure at the hospital on March 1st. After waiting for three hours in a type of holding cell, he again went under general anesthesia. The procedure, which involves the insertion of a scope into his esophagus, went fine, though the physician did not find the gallstone that was allegedly stuck in his common bile duct. Instead, what the doc found was "sludge"—bits of stones and/or fat, perhaps—which he cleared out. He also widened the sphincter where Calvin's common bile duct enters the duodenum, so that future stones can pass more easily into the intestine and are less likely to block the pancreatic duct, which can result in serious, sometimes lethal, consequences.
So, I guess one could say that the ERCP was successful. Calvin is eating well again and thankfully has not exhibited the kind of pain we saw him experience in December and January.
So, that's the update, folks, except to add that hopefully Calvin's seizure this morning will turn out to be a one-off.
Thank you for your thoughtfulness and well wishes. As always, they mean the world.
2.28.2023
hope and trepidation
Tomorrow morning, Calvin and I will finally make our way to Maine Medical Center for his endoscopic retrograde cholangiopancreatography (ERCP) meant primarily to remove at least one gallstone that is stuck in his common bile duct and which probably caused the excruciating waves of pain and elevated pancreatic enzyme that landed him in the emergency room on New Year's Eve. Calvin has likely needed this procedure for weeks if not months, but it has taken this long to get it on the books because—although every radiologist who read Calvin's CT scans and sonograms reported seeing at least one decent-sized gallstone—one of Calvin's providers wasn't convinced. Eventually, the procedure was scheduled, but then Calvin brought Covid home, and we had to postpone the operation a week.
The ERCP is not technically a surgery. It is an endoscopic procedure during which Calvin must undergo general anesthesia. The gastroenterologist—one of only two in Maine who has the skill to perform this operation—will insert a scope through Calvin's mouth into his esophagus to look for ulcers, etc., then go on to remove the problematic gallstone, perhaps having to widen the common bile duct so it passes more easily.
This will be Calvin's fourth time under general anesthesia. In the past, he has faired well, but the risk of dangerous complications is far worse for someone like him who is neurologically compromised and prone to getting pneumonia which, by the way, he was diagnosed with on New Year's Day. The last time Calvin had to have general anesthesia was last April during surgery for the hip he broke at school (a clean break at the base of the femoral head) when his aides let him walk around by himself and attempt to sit in a chair, which he most regrettably though not surprisingly missed (his vision and coordination are not good).
It is hard to put into words how gut-wrenching and nerve-racking it feels to watch your sweet, nonverbal, cognitively impaired child be wheeled down a hallway with a bunch of strangers into an even stranger room (operating rooms are cold, chrome, sterile places) without any understanding of what is about to happen or why, and without mom or dad by his side to comfort him. To say the experience is worrisome is an understatement. It is the cause of great trepidation.
And so, using the gastroenterologist's patient portal, I wrote to the physician who will be performing the ERCP:
"can i stay with calvin until he goes under general anesthesia?"
The doc replied within minutes, "yes. you can stay with him."
I breathed a sigh of (some) relief.
With any luck, the procedure will go off without any hitches, Calvin will make it safely out from under the anesthesia without aspirating or suffering from too much irritability, and we'll be home sometime tomorrow late afternoon or early evening. Hopefully, Calvin will get some immediate relief from the prolonged pain and discomfort that this gallstone has likely caused him and, hopefully, he'll be protected, at least for a while, from the dangerous sometimes lethal effects that gallstones can cause.
Sadly, Michael cannot join us because it has not yet been ten days (hospital protocol) since his Covid diagnosis, and because he'd miss another day of teaching; I urged him into staying behind. Thankfully, one of my besties, Barbara, is going to drive me and Calvin to the hospital in Portland, and another bestie, Matty, will shuttle us back so I can attend to Calvin's needs on the drive home.
Until then, cross your fingers and toes.
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Michael, in white, escorting Calvin as far as allowed before Calvin's hip surgery last April. |