Finding Balance in the Chaos: My Journey as a PCDH19 Epilepsy Mom, Advocate, and Relentless Researcher

If you’d told me a decade ago that I’d spend my nights researching neurology, clean living, and non-toxic home products, all while juggling working mom life and two kids under seven, I would’ve laughed. But motherhood has a way of rewriting your story.

I’m a mom of two girls, both strong, curious, and full of light. My youngest was diagnosed with PCDH19 Epilepsy, a rare and complex clustering epilepsy, at just 11 months old. That diagnosis changed everything. Our routines, our priorities, and the way I look at health, home, and motherhood.

When Everything Changed

When the first seizure hit, time froze. The panic, the ambulance ride, the sterile hospital lights, it’s all burned into my memory. After months of uncertainty, we finally got the diagnosis: PCDH19 Epilepsy, a rare genetic epilepsy that can be difficult to control once a seizure cluster begins.

That word -clustering - is terrifying. It means seizures that come in waves, often resistant to medication. It means sleepless nights, hospital stays, and a constant undercurrent of worry.

But even with all that, we’ve been incredibly lucky. We live close to one of the best children’s hospital in the country, and our neurology team has been nothing short of phenomenal. They’ve guided us through every setback, every breakthrough, and every long night. I hesitate to call us lucky because, with PCDH19, things can change in an instant, but right now, I’m grateful. Deeply, humbly grateful.

The Invisible Weight of the Mental Load

Being a mom means carrying an invisible checklist at all times, school schedules, doctor appointments, therapy sessions, work meetings, meal plans, laundry piles, and the constant mental math of “what’s next.”

Now add in managing a rare epilepsy diagnosis, and that mental load becomes a full-time job. Between medications, seizure logs, insurance calls, and care coordination, my brain is always “on.” And yet, life doesn’t stop. My oldest still needs my attention, my husband needs my partnership, and our golden retriever needs her walks and belly rubs.

Some days I’m composed and efficient. Other days, I’m surviving on caffeine and grit. But every day, I show up. Because that’s what moms do.

Taking Control Where I Can:

With almost all forms, Epilepsy, control is an illusion, but the one thing I can control is our environment. That’s where my obsession with clean, non-toxic living began. I started researching how certain household toxins, chemicals, and endocrine disruptors can affect neurological health. I swapped out cleaning products, skincare, detergents, and cookware. I learned the power of clean ingredients, safer materials, and mindful living.

It became my way of fighting back, of saying, I may not have a say in the seizures, but I do have a say in our surroundings and it turns out, that’s where my sanity lives.

Finding Order in the Overwhelm

Working full-time while managing a complex medical journey means I rely heavily on organization systems that keep the chaos from consuming us. I’ve learned that organization for moms isn’t about perfection, it’s about survival.

I live by color-coded calendars, weekly family schedules, meal prepping, and a trusty medical binder that travels everywhere we go. These systems save my sanity and make room for what matters most: connection, laughter, and moments of calm.

In this blog, I’ll share organization tips for working moms, time management hacks, and the tools that help me balance my career, my kids, and my sanity.

Why I’m Starting This Blog

I’m starting this blog to share what I’ve learned about PCDH19 Epilepsy, about managing the mental load of motherhood, and about creating a clean, intentional home that supports wellness and peace.

This space is for parents, especially working moms, who are juggling it all and just trying to keep their heads above water. I want to share practical strategies for clean living, organization, and family balance along with the real, unfiltered moments that make motherhood what it is: messy, beautiful, and relentless.

You’ll also find kids’ gift ideas, home décor inspiration, and mom life tips that help make everyday living more joyful, simple, and sustainable. Because even in the midst of chaos, there’s still room for creativity, beauty, and laughter.

Moving Forward

Life with two little girls, one with PCDH19 Epilepsy, a supportive husband, and a golden retriever who thinks she’s human, it’s a full house and a full heart.

Every day, I’m learning to balance family life, work life, and the unpredictable nature of epilepsy. I’m learning to appreciate the calm, stay grounded in gratitude, and let go of the things I can’t control.

This is my story - a blend of motherhood, medical advocacy, clean living, and resilience. My hope is that through sharing it, I can build a community of other parents who find strength, grace, and a little bit of calm in the chaos.

Top 5 Products That Support My System:

1. If you’ve never heard of the Skylight Calendar, it’s basically the holy grail of family organization a digital command center that keeps everyone (and everything) in sync. I used to rely on sticky notes and mental reminders, but let’s be real, that system retired itself around the third missed appointment. Here's why it’s worth every penny:

🗓️ 1. One Hub for the Whole Family

Our entire family's schedule, including the dog's vet appointments, is centralized, eliminating "I didn’t see it on the calendar!" moments.

💡 2. Visually Beautiful (So You Actually Use It)

It’s not another clunky screen, it looks like sleek home décor. I have ours mounted in the kitchen, and it blends right in while quietly keeping our lives running.

⏰ 3. Syncs Seamlessly

The Skylight pulls from Google Calendar, Outlook, and Apple. So, whether I’m updating therapy appointments, pharmacy requests, work calls, or school events, everything automatically updates across devices.

👩‍👧 4. Kid-Friendly (and Husband-Proof)

My daughters love tapping to see their week, and my husband…well, let’s just say it’s finally cured the “I didn’t know about that!” epidemic.

💬 5. Encourages Routine + Calm

Seeing our week laid out visually has made a huge difference for my youngest, routine and predictability help bring a little calm to our world, especially when seizures or medical appointments shake things up.

✨ Why It Works for Me

I can’t always control what life throws at us, but having one central hub to manage our time, medications, and daily rhythm has given me back hours of mental space. It’s not just a calendar; it’s a sanity saver. If you’re a visual person juggling work, kids, and about 47 moving parts, this thing will change your life. Skylight Calendar

2. These Clear Stackable Bins - see everything at a glance, I swapped out our mismatched plastic tubs for clear, stackable bins so I can see what’s going on instead of playing hide-and-seek in the chaos.

   

3. Label Maker Machine - A compact label maker helps you categorize everything, from cleaning supplies to medication for your daughter. With labels, everything has a place, which means less mental load and fewer “where did I put that?” moments.

   
   

4. These Under-sink slide-out organizers turned our medicine, cleaning products, and gear into a nurse-station I can actually use without a blindfold.

5. One of my favorite small wins: a rotating tray for medications. Because at 7 a.m., automatic is better than looking for the label Lazy Susans / rotating trays for pantry or cabinets

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