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Keep Goin Owen

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

01/26/2026

Today is the date 1/26 👉 1 in 26. That’s how many people will develop epilepsy in their lifetime. It’s more common than multiple sclerosis, Parkinson’s disease, and ALS, yet it’s still so misunderstood. Epilepsy is life-threatening, unpredictable, and it shapes every decision I make and my entire identity as a parent 🧑‍🧒
I will never stop fighting for my son, raising awareness, and standing up for families like mine who live this reality every single day 💜⚡️I’m here and I get it 🫂

01/13/2026

I don’t have elegant words for this, but here I sit, so anxious I’m nauseous and I cannot sleep -
It’s been 2 years since I’ve been to the belly of the beast with Owen and now he’s bigger, stronger, trauma aware and I am absolutely terrified of what tomorrow’s hospital stay will bring. We used to go to the emu together every. single. month.

But now we’re coming in with a broken heart, a broken spirit, and a taste of freedom that stung so badly when it ended - I still haven’t recovered. Was it real? Will we get it again? More importantly, are we still strong enough to fight for it?

Even though seizure freedom was brief I believe it was worth every second. So here we go again my son, the horrors persist but so do we 💜⚡️

01/01/2026

New Year’s Eve in the Upside Down. On-theme snack board, 3D printed Vecna, and gearing up to fight the toughest villain yet —epilepsy.

Bring it, 2026 💜⚡️🧠

12/25/2025

This year’s Christmas Eve party was brought to you by questionable decisions and a very aggressive snow machine 🌨️ 😆 🎅

12/19/2025

Honeymooning once again over here, how long will it last? No one ever knows but for now, I’m focusing on heavy pours and holiday fun … Epilepsy’s gonna need to hire a new PR person after we’re done with him 💜⚡️😆

specialneeds specialeducation epilepsy specialneedsmom medicalmama developmentaldelay intellectualdisability neurodiversity acceptance rarediagnosis raredisease medicaltrauma eeg autism inclusion

12/08/2025

Proof of life ✨ Thank you to all who reached out. Sad to report that Owen’s miraculous 2 year seizure free streak has ended and I spent the weekend drowning in my sorrows and drinking until I couldn’t feel feelings 🍻 Per usual the electric devil has made a dramatic entrance instead of politely trickling back into my life - I was stunned awake at 3am by that familiar and horrifying noise that all epilepsy parents know (and hate). Owen appears no worse for the wear thankfully, he’s so freakin strong that kid, nothing slows him down 💜

But, now it’s Monday and with a renewed sense of strength I’m back to fight once again, meaner and salty as ever, epilepsy messed with the wrong kid and with the fire of a thousand suns and the energy of the world’s worst Karen inside me, I have vowed to battle once more, epilepsy is tough but we are tougher, let’s do this Owen, I gotchu babe 😉

12/04/2025

This is what fighting a catastrophic diagnosis looks like 💜⚡️

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