About Megan

When our daughter, Evie, was born with CHARGE syndrome in 2011, she completely changed our lives. We were thrown into the world of caring for a medically complex child and talk about a learning curve!

Evie has had over twenty surgeries and spent about 10% of her first four years in the hospital. Since discovering and removing a birth defect in her small intestine in 2015, she has grown and thrived better than we ever could have imagined!

This blog started to keep people up to date on how she was doing, but as she’s gotten older, I’ve struggled with how much I should share about her life. I still want to share my journey, though.

So that’s what you’ll get here now: my journey to becoming a mama bear, learning to advocate and fight for my daughter whenever and wherever she needs it. And hopefully I can share some of what I’ve learned!

Here’s some of my favorite posts over the years if you’re looking for a place to start:

You’re The CEO: Taking Charge of Your Special Needs Parenting Story

We’re Not Special Parents

The Means Cannot be the End

The Diagnosis is Not the Person

Just Intensity

Hospital Life Tips and Tricks

Disney World Wish Trip Tips