maddi

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

 

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

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

 

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

 

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

 

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

 

huck finn

From 2012

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

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

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

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

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

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

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

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

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

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

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

mother's day

Mother’s Day has often been bittersweet for me—not a day to necessarily celebrate—what with Calvin’s autism, chronic epilepsy and other disabilities, and my own mother’s slow decay from Alzheimer’s years ago. Yesterday, as usual, I experienced a mix of emotions thinking back to the day when Michael and I learned that our unborn child had something terribly wrong with his brain, that for some unknown reason—despite the healthiest of pregnancies—our baby was missing a significant amount of white matter in his brain. Those days leading up to and including his birth were some of the most difficult days of my life, and remembering them is painful.

As a child, on Mother’s Day, my siblings and I gave my mom funny cards, some store-bought, some not. My brother Steve once made her a wooden plaque in the shape of a shield sprayed green and gold with the words BEST MOM AWARD. She hung it on the kitchen wall for years. In junior high school shop class, I made Mom a groovy plastic flame-colored envelope opener and a wooden chopping block. On Mother's Day she often got flowers and plants and, later, Mylar balloons. Sometimes I drew her cards with birds and hearts and flowers that said, “I love you Mom.”

Every Mother’s Day, I know that none of these kinds of things will be mine.

But the first sound I heard yesterday morning was Calvin calling, “Uh-uh”—his way of saying “Mama.” I went to him, removed the netted canopy from his bed, unlatched and lowered the safety panel and crawled in with him. A huge smile spread across his face as he began showering me with hugs and kisses.

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. 

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.

i had some really great coaches along the way, including my big brother, scott, who helped me realize much of my potential at an early age. i wasn't always one of the better swimmers at that level (i trained with and competed against a couple of olympians), but when my heart was in it, and with the right coaching, i did okay, learned a lot about dedication and hard work, and realized how strong i could be.

i put myself through college by life guarding, teaching swim lessons and coaching summer league swimming and waterpolo to some incredible, zany, hardworking, talented kids between the ages of four and eighteen. i helped them go from being nearly last in the league of about thirty teams all the way to second place. i am still in touch with some of them, and they are still amazing.

after college i was chosen second alternate for the USA's northwestern region women's water polo team for the goodwill games.

though i worked for many years in the apparel industry as a designer, i often describe my coaching as the best, most enjoyable and rewarding job of my life.

in the last year i've taken up running in earnest and have done well competing in 5K, 10K and 10-mile races. i hope to one day run a half-marathon event.

well, thursday was my first day as a volunteer assistant coach for the topsham travelers kindergarten through 5th grade cross-country team of about 50 kids. i get to coach thirteen, or so, 5th graders, which thrills me, since i love tweens and teens. they're such rascals.

since calvin is not capable of participating in sports, this opportunity for me to coach, encourage and inspire children and to see their joy of sport is especially welcome. i get weepy just reading that sentence.

thursday was a total blast (thanks mary for taking care of calvin)! i had so much fun in the warm spring sun before some gorgeous, leaden clouds moved in and we got totally soaked just as practice was ending. i got to hang out with a few other great women who are also volunteer coaches. i led the entire group of kids in stretches, gave them high-fives, employed my ear-piercing finger-whistle with great effect, encouraged the fast and slower runners, praised them, gave a few tips on pace and form, taught respect and good listening. i wish somehow i could find the time to get a more regular coaching gig. it fills my heart with joy. maybe some day. for now, i'm simply gushing ... and terribly grateful.

caught in the downpour!

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.

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.

Calvin waiting patiently to be prepped for the ERCP

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. 

Michael, in white, escorting Calvin as far as allowed before Calvin's hip surgery last April.