When we were down in Florida, I was asked a question by two separate people that I look up to and admire deeply - “How do you know what she knows? How do you know Evelyn understands all that you say to her?” To be honest, I didn’t know how to answer that question at first because it never crossed my mind to think otherwise, and then it hit me (at 5:30 in the morning after very little sleep), that before Rett officially came into our lives, Evelyn knew it all.

The reality of Evelyn’s diagnosis of Rett Syndrome, and all that it entails, still surprises me at times. The fact that it can alter even the simplest things catches me off guard that it feels like a punch in the gut all over again. Something as inconsequential as going out to eat, which if you know our family you know how much we love food, can become the biggest feat and a simple pleasure that we do not partake in often.