For all those lucky folks out there who encounter my gregarious social butterfly Adelaide and her Port Wine Stain, I tell you: Go ahead, Ask.
Seriously, mention it. Ask about it. Don’t worry about ‘shush’-ing your kid when they ask Addy what’s on her face. It’s good for her, and, honestly, my favorite topic in the WHOLE ENTIRE WORLD is my offspring, so, naturally, anything to do with them is a fabulous topic for me to talk on.
I want to talk about it. I want to tell you about Addy. To tell you what it was like to see her face for the first time. To share all my rookie scientific knowledge of those blood vessels and nerves and treatment options and research. And how awesome Children’s hospital has been to us. And how we’ve navigated her self-esteem so far. And what I’m afraid of in the future.
Because in my experience, all my chattering will prompt you to remember some long-forgotten relative or acquaintance with a port wine stain or something like it, and when you tell me all about your uncle, I’ll learn just a little bit more about how to raise a kid whose face carries a mutation, and how to do it better.
So please, ask. I want to answer.