This past week I spent five days with the most amazing people. Girl Power 2 Cure participated in its 9th year being part of the Disney Princess Half Marathon Weekend at Walt Disney World. To say that I was blown away, yet again, would be an understatement.

As I was waiting in the lobby of our hotel for my dad, who was driving down from St. Augustine to spend some time with me before my flight back home, some of our families started trickling in from the final race of the weekend. They looked very much how I felt, tired but not weary, exhausted but with full hearts. I chatted with each of the families for a bit just re-capping the weekend and before each of them stepped away to ease ever so gently back into their everyday life—they thanked me.

Each time one of the families said “thank you” it always caught me off guard, and my immediate response was to give them gratitude right back. We all had our part in making this whole event a possibility. I may have played a small part in the planning and logistics of the whole weekend, but they went above and beyond to garner further support for those families who were walking the same journey, but having to cheer everyone on from afar.

I will never take for granted the opportunity to talk about my Evie girl, to tell complete strangers about the light and the joy that she brings to any situation, the challenge and proverbial mountains she has to climb simply to live her life. I get to talk about how Rett Syndrome affects our whole family and how we face it, head on, from the moment we wake up to the moment we go to bed.

My first year being a part of this weekend I was a complete ball of nerves, I didn’t know what to expect and as an organizations Family Support Coordinator, I had no idea who anyone was, not really the impression you want to make. Everyone welcomed me with open arms and helped me with names, family stories, and made the connections for me along the way. I was a tad overwhelmed. This year was a reunion with families I met last year, and a first meeting of families I have been talking to through social media, for over a year. I was so incredibly excited to finally get to meet all of these amazing moms and dads who we have been cheering for from all over the country. To say we are all kindred spirits would be a slight understatement. We talked about each of our children’s incredible uniqueness, how they are faring, and basically just filled each other in on a whole lifetime in a matter of moments.

When I took a step away just to observe all of our families interacting at our team dinner, I realized that although it took so much for each person to be there, it was something that they needed, it was something that I needed. Often times, in our everyday life, we are faced with so many people not understanding, or not caring, not appreciating your amazing child for who they are, as they are, and I had the privilege of being in a room with nearly two hundred people that gave me just that. They gave me a moment of reprieve from having to explain myself, why our life looks the way it looks, or explain my daughter’s mannerisms or convince others that just because she can’t speak it doesn’t mean she doesn’t understand. I didn’t have to accommodate other people’s feelings because they don’t understand our life or how to interact with our most precious girl. (This is not a bad thing, it is just our reality).

They gave me such a precious gift, that will carry me through for some time. I am hoping that they were given that same gift in return and I hope that all those walking along a similar journey know that if I could, I would give them the world.

For those who may be looking ahead to next year, or for ways you can be a part of such an incredible weekend (and help other Rett families in the process), Stephen and I are forming a team for Evelyn for Disney Princess 2021! Be on the lookout for details in the coming months! Whether you are close to Orlando, Florida or not, we would absolutely love for you to be a part, to run in honor of Evie, to run #UntilSheCan.

To Give Them the World