Please Ask!

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.

Addy Flying Port Wine Stain Baby

 

Addy Wired Port Wine Stain Baby

Addy Mommy Port Wine Stain Baby

Addy Playing Port Wine Stain Baby

Addy Daddy Port Wine Stain Baby

Addy Laughing Port Wine Stain Baby

Addy Kitty Port Wine Stain Toddler

Addy Festival Port Wine Stain Toddler

Addy Dancing Por Wine Stain Toddler

Addy Playing Port Wine Stain Toddler

Siblings

SocialAddy

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Posted on July 8, 2015, in 3. Addy Stories & Experiences and tagged , . Bookmark the permalink. 5 Comments.

  1. colleen jensen

    Your daughter is so beautiful. My son was born May of 2017 and has a pot wine stain that covers a good portion of the left side of his face. We call it his superhero mask!! We’re in the process of getting his first scan at Children’s. I would love to ask you for advise along the way. It seems very daunting.

    • Hi Colleen! Thank you so much! Yes, I would absolutely love to answer any questions you have! It can indeed seem very daunting; there’s already so much to process when you have a new baby, and a medical issue on top of it can be overwhelming. My email address is whathappenedtoherface@gmail.com. I love talking to other port wine stain parents. 🙂 Your ‘superhero mask’ attitude is fabulous — a great spin on it!

  2. I have a port wine stain on my right cheek as well:) I’m actually using it as a platform for my upcoming pageant. I’m calling my platform “Angel Kisses” since that’s what teachers always referred to my birthmark as. I’m so proud of your little girl for being able to handle it with grace, because kids can be mean!

    • I love it! We always liked hearing people call it an angel kiss; it’s such a sweet title. Using yours as a platform for a pageant takes guts – well done! 🙂

  3. My only comment would be,how would you notice, what a beautiful smile on that face. Hopefully that is what everyone will see.

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