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.

Running through Times Square

3.10.2024

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.