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

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?
4.02.2024
little celebration
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.
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Calvin wearing his cool hand-me-downs |
3.28.2024
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.
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Running through Times Square |