One of my fellow PCDH19 moms called our girls “mermaids” the other day…and it has been sticking with me. I really like to think of the girls with PCDH19 as mermaids.

They all see to share an astounding love of water, something we noticed in Ez from a very early age. Since they are all girls, it fits.

But more than that, they also feel like almost mythical beings: elusive, unusual, charming, ethereal, enchanting, beautiful, other-worldly…you get the picture.

I put up a few pictures of our “mermaids” on The Cute Syndrome facebook page for fun…and it seems like people have really taken to them. It just seems to fit: The PCDH19 Mermaids.

The night before last I got to go out with one of my dear friends–this is the same dear friend who named Ezzy’s syndrome The Cute Syndrome, so we love her lots! She took me on a date to the ballet. Before we left she offered me a gift, an early birthday present…at which point I felt extraordinarily pampered having already eaten their homemade pickles, gotten hugs from her cute kids, and being about to be taken out for Giselle.

What had my dear friend gotten me? Something she said she could not resist: A beautiful Alex and Ani bracelet with a sweet little mermaid on it.

As I have told you before, I am spectacularly blessed by some amazing friends. I know that my friend thinks about Ezzy and The Cute Syndrome a lot…she is certainly one of TCS’s biggest fans! But I was so touched that she thought about us in this way…that something on the page had stuck with her and clicked while she was out and about. 
Well I will certainly be wearing my mermaid…and hanging out with my PCDH19 Mermaid…and thinking about our other PCDH19 Mermaids as they take to the water in this tremendous heat, charming us with their smiles and splashes.