Facebook reminded me that ten years ago this week, Kevin had his first seizure. With his genetic condition, we knew it was a strong possibility, but woke up grateful each day that it hadn't happened. Yet.

It was summer, just like now. We were headed into what should’ve been a lazy, sunny week, but instead, our world cracked open and never quite sealed back the same way.

I can tell you where I was standing. I can still hear the silence that follows a seizure—that eerie quiet where time seems to suspend itself while your brain scrambles to catch up to what just happened.

It was just the beginning. And I’ve spent the last ten years learning how to walk that path, even when it twists unexpectedly, even when the ground disappears under my feet.

The milestones hit differently now. While many families celebrate first steps, first words, or first jobs—ours have included EEGs, med changes, and hard-won moments of calm. We’ve learned to measure progress in breaths taken, in school days completed without a call from the nurse. Retractable epilepsy and LGS means regression--unavoidable regression unless you control the seizures. And, unfortunately for Kevin, we're just waiting for the science to catch up to him.

I won’t sugarcoat it—there’s grief. There’s grief for what could’ve been, for the version of childhood that wasn’t ours. But there’s also gratitude. For the nurses who know us by name. For the teachers who listen. For every quiet moment that didn’t end in rescue meds and canceled plans.

And there’s strength. Kevin’s, mostly. But also mine. I didn’t know I had this in me. I didn’t know I could fight so hard, advocate so fiercely, or sit up night after night researching meds and school accommodations like it was my job—because, well, it became my job.

Ten years ago, I didn’t know any of this. I was just a mom watching her child on the floor, unable to do anything but whisper “please, please, please” into the chaos.

Today, I know better. I know what to ask for. I know what to push for. I know the loopholes, the workarounds.

If you’re newer to this journey—if your child’s first seizure was last week or last year—I want you to know: you’re not alone. You will find your footing, even if it doesn’t feel like it now. The grief might always be there, but so will the community, the resources, and the resilience you didn’t know you had.

We’re ten years in. And while I’d give anything to change that first moment, I wouldn’t trade the strength it’s uncovered in both of us.

Side note--One of my few parenting regrets regarding epilepsy is this--For years, doctors would ask us "are you seeing any infantile spasms?" and I'd always say no. Truth is, I didn't know what an infantile spasm was. I heard the word spasm and just assumed he wasn't having them. Then one day, the Brain Recovery Project shared a video of infantile spasms. Oh. If your child is at risk for epilepsy, please educate yourself on allllll the different kinds of seizures, including infantile spasms. Turns out "that dark day" in July was not his first--we just didn't know what we were looking at. Read: ESES, Status Epilepticus, and Other Things I Wish I Knew about Epilepsy.

Thanks for being here—for reading, for sharing, for walking this path with me.

—Lisa

*Please note: the posts here that are in the "Sunday Night Emails" category are just that--previous emails sent out on a Sunday night. The dates/times/content may not match up with present day events because it was sent out a while ago.