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 ..read more

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, a ..read more

On most days I take Calvin to the grocery store. It's one of the few places he seems to tolerate and perhaps even enjoy. He smiles on the way in and on the way out and a little in-between. He stares at the florescent bulbs above the produce case. He pats the crinkly plastic wrapping. Though he can't steer it, he pushes the cart but sometimes lets go and stands in place for no apparent reason. Despite my attempts to thwart his efforts, he too often licks the glass doors in the dairy section. He tries to bite the metal shelving. Then he gives me copious hugs in the checkout aisle. On most trips ..read more

I'm writing from Italy, today the sky was crystalline blue, the sun was warm, autumn leaves astonishing. I can’t do anything to avoid your suffering but I'm sharing today's sky with you. —Near Milano, Italy This feeling of paralysis comes over me every time I read your blog. I first came across it after my sister met you somewhere. I'd been curious about Calvin for a long time; I often look in on your husband's photo blog and had seen the photos taken at some big city medical facility and then I got to see Calvin in real life at his school. Reading it overwhelms me and grinds my thoughts t ..read more

When running I almost never think about Calvin. It's my worry-free, angst-free, stress-free, un-calvin-centric time, and it's good and healthy and fun for me.   But on yesterday's 8.5-miler, as it rained like hell, and gusts up to 50 mph lifted and pushed and tossed me, I thought of Calvin and of how he does the very same thing to me. And I thought of this gorgeous poem written by a mother of a child not unlike mine, and of this time in Florida thirteen and a half years ago when Calvin was six and a half and when we could more easily take him places because he was not impossibly restles ..read more

A little less than two years ago I began running in earnest for the first time in my life. My dear friend, Olympic gold-medalist and world-class marathoner, Joanie Benoit Samuelson, knowing that I had once been a division I swimmer, had been asking me for years, "When are you going to get back into the pool?" and, "You know, swimmers make good runners."  I had long lost interest in swimming for fitness, in doing lap after boring lap despite how good my body felt moving swiftly through the water. But I was desperate to feel like my former athletic self. More so, I pined for an escape, a re ..read more

a sick child. a string of painful restless nights for him. rude awakenings. too much missed school. the surgery to remove our dog smellie's melanoma. too many tiffs requiring apologies and forgiveness. a mass shooting in a nearby tight-knit community—eighteen people dead. the shooter's car and body found a mere mile from michael's studio. conversations about gun violence and gun safety measures. conversations about suicide and its reasons. softly schooling myopic, well-meaning people who think suicide is somehow a selfish act rather than unimaginable suffering. steadfastly countering other peo ..read more

now i will be strong for you. i can. you will stay in my thoughts and you will shine. i know. focus on the little things. the smell of your coffee, the feeling of the sun on your face. the wind in your hair. the quiet of a back road. the taste of clover and salt in the air. the warmth of a loved one's hand. the feeling and sound of the ground under your feet ... tarmac ... carpet ... tile ... wood ... rubber ... linoleum ... sand .... grass. the happy din of knives and forks on a plate. the rich taste of dark chocolate. the sound of bees and birds and brooks—even the memory of them. the color ..read more

Despite the fact that nineteen and a half years of stress, sleep deprivation, and frustration from raising Calvin has likely shaved a few years off of my life, in my mind, spirit, and most parts of my body I still feel thirty-six. Regardless, I woke up this morning entering my sixtieth year of life, and though the wee hours of my birthday began with a restless Calvin suffering from some sort of pain, from my perspective—one in which I try to practice gratitude, even for the mundane—life still looks decently rosy. That fact is a testament that we humans are resilient as shit, most of us able t ..read more

A fortnight ago, Calvin completed nineteen weeks—three and a half months—without having any seizures. It was an all-time record. It's not hard to remember a time not that long ago when nineteen days would have been a record, and even nine days seizure-free was considered pretty good. Sadly, the next day Calvin suffered back-to-back grand mals amid a low-grade fever. Four days later he tested positive for Covid despite not having any significant respiratory symptoms. It might sound strange to you, but I was actually relieved to know that he had Covid, which meant at least there was a knowable t ..read more