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Keep Goin Owen

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The experience of raising our son Owen who has Lennox-Gastaut Syndrome.

10/28/2026

One of the bittersweet perks of developmental delay parenting: getting to do the little kid stuff for a little longer, maybe even for life 🎃 A tiny pocket of joy within an experience that holds so much grief. We will always have the pumpkin patch won’t we Owen?

10/21/2026

Owen in his element ✨🌅🌊

📸 A photo series

09/08/2026

Came back from our Labor Day weekend trip to a letter approving Owen’s emergency neurosurgery tomorrow 🤯 Wow that sounds so dramatic!! But any seasoned epilepsy person knows that getting your VNS implant replaced is as low key and non-brain-surgery-ish as brain surgery could ever ever be! So no skull pe*******on tomorrow at all - at least that’s the plan … the PLAN, the PLAAAAAN!!!

Actually God laughs at my plans, none of this was ever part of the ‘PLAN’ I was supposed to be at the little league game today complaining about coach pitching and stale popcorn - not at the children’s hospital for billionth time 😭

But alas, I am here, this is my life and I am in it 100% for my youngest son the one that has changed everything I thought I knew about kindness, acceptance, and motherhood, so here we go again Owen, you, me and the powers that be, I’ll continue the rhyme with F**K EPILEPSY 💜⚡️

08/24/2026

5 years since we put you in the arms of a neurosurgeon and asked the universe to help us save your sweet little life from a relentless and cruel disease. We were told there was only a 60% chance this dramatic procedure would help your epilepsy and a 0% chance it would cure you but we believed your life was in danger and we decided to do whatever it takes to give you a chance 💜 after that day we got introduced to a whole new version of epilepsy, one that responded treatment and no longer terrified us.

This year’s celebration was a quiet one because while we still believe firmly the surgery was the absolute right decision, we have had to go through some heartbreak with seizures returning after a long (2 year) absence ❤️‍🩹 but if there’s one thing we know how to do, it’s fight epilepsy, so even though we’re fighting this now very weakened version epilepsy, we feel as hopeful as we ever have before. The electric devil does stand a chance ⚡️

Congratulations Owen, you beat the odds once and you’ll do it again 💪

07/17/2026

Honored that this video about Owen’s surgical journey was recently shown at a the Pediatric Epilepsy Surgery Alliance conference to help educate, inspire, and give hope to other families facing impossible decisions 💜⚡️

04/28/2026

Hello new parent, potential parent, and especially pregnant women.

It’s me. Your worst nightmare.

And don’t worry I can’t actually hear your thoughts, but I sure as heck can FEEL them!! I see you looking at us, sneakin a peak, sending out a lil gratitude that IT’S ME and NOT YOU with a sick and disabled kid. And … now you’re now feelin like your good deeds and excellent medical/dietary/research behavior saved you from my fate - you’re absolutely WRONG but whatever helps you sleep at night.

Anyways I’ve spent years trying to make peace with this strange sensation but I still feel it every. single. time. I’m in public with Owen. Like me simply existing reminds you that it coulda been worse? Barf, I don’t like it but I’m stuck with it - and every disability mom on the planet knows this feeling 💔

Can I fix it? Probably not in this lifetime but I am putting my whole heart into sharing our experience in the hopes that my presence no longer generates fear in society but a desire to express kindness and acceptance instead. How am I doin so far?

04/27/2026

Another OC Epilepsy Walk in the books for Team Owen 💜⚡️

We came, we walked, we purple’d. Than you to everyone who supported us!! Until next year 🧠

04/10/2026

Nothing like a couple of days of intense health issues to remind you who’s really in control here … I had one the most brutal vomit virus nights of my motherhood journey so far this week and in classic epilepsy cruelty fashion that was followed up with one the longest and worst seizures these eyes have ever seen 🙈

The thing is, I knew it was coming, I was on high alert because after 24 of no meds and no sleep, the electric devil likes to come out and play 😈 and that she did.

Everyone is recovering now, back to baseline as the say in medical mom world, but the those horrors …well, they do be persistin’ sometimes 😖

03/27/2026

Happy Purple Day to all who celebrate and all who loathe ⚡️💜 a reminder that today we let the electric devil have it’s little moment, we wear purple and honor the fight because we love fierce and we don’t give up

03/05/2026

Today’s Facebook memory really chose violence. Good Morning Emotional Wreckage- it’s been a minute. And yes Colleen of 2018, you will need to get woke real quick 😖

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