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.