Talking to Addy (part 1)


Back after a long hiatus!

In my last post (long ago), I responded to a dear reader’s question regarding what we tell others about the port wine stain. In this one, I’m belatedly following up to respond to the same reader’s question regarding what we tell Addy:

“…Any advice on how you talked to Adelaide about her PWS when she was Sylvie’s age [23 months]? Sylvie doesn’t notice it normally, but after this last treatment, she did touch her face when she looked in the mirror, so she notices that it looks “different.””

Ah, childhood oblivion; it’s a lovely thing.

As I was writing a response to this question, I found my answer to be getting ridiculously long, so I’m splitting it into two blog posts. Number 1 here is how we prepared Addy for the concept of having a huge dark-pink mark on her face; Number 2 will be how we actually talked about the port wine stain in more concrete terms when she was little. So if I seem vague here, or like I’m coming at the question from a 30,000-foot view, don’t worry – I’ll get more specific in my next post.

First, let’s cover the advice I won’t give you. When it comes to facing a blunt world with a unique face, other parents may empower their darling with the same indignance that soaks our culture. When Junior stares at the mirror confused, the parent crashes in with, “You’re PERFECT, don’t ever let ANYONE tell you otherwise.” Before Junior even sees a stranger doing a second take, Indignant Parent chimes in with, “ReMEMber, some people are just plain ignorant. Keep moving.”

I’m not that kind of parent. Indignation is great for making a sassy kid, but I don’t think it empowers them to be comfortable in their own skin. I’m a realist, and the reality is that you don’t need a sassy attitude to have positive encounters with other humans in the world; in fact, if anything, it hinders that goal.

My big-picture advice? Give your daughter a head start on feeling comfortable with her different, stained face. Start early, while she’s still mostly oblivious, and be subtle. We didn’t directly talk about the Port Wine Stain with Addy until she was in preschool, so in her early years I basically trained her to believe that having a different, marked, pink face is a good thing. Then I hoped that, when it finally dawned on her that *she* had a different, marked, pink face, it would be a happy and comfortable realization. So far, it’s worked.

To do this, send lots of little messages gradually, consistently, and frequently. You want to subtly convince her that port wine stains are awesome.

To begin with, I applied blush during my morning makeup routine when Addy was present. A lot of blush. Often. And I made sure to admire myself (think “exaggerated Hollywood starlet” kind of self-admiration) in the mirror. “Ooh, how lovely!” “Do you think that’s pink enough?” “I really want my cheeks to be nice and dark.” “Hm, I should make them pinker.” “Well, a classy lady needs nice pink cheeks!” And then I called in reinforcements: my mother, my mother-in-law, and the daycare lady each admired their pink-blushed cheeks in the mirror when Addy happened to be with them, applying rouge liberally and happily. “You can never have too much pink!”

(I know what some of you may be thinking – “What kind of message is she sending her daughter by relying on something as superficial and false as blush for beauty? True beauty should come from within!” That’s fine and dandy, but in our case, Mother Nature and Cultural Norms conspired together and slapped Addy with a big birthmark in the very color that women around the world aspire to have on their cheeks, so I’m pushing Addy to the front of the pack on this one. We all want pink cheeks? SHE WINS. And I’m not taking that away from her.)

So play up the pink-cheek thing; she might not realize yet that she herself has a super-pink cheek, but for now it’s adequate that she absorb the knowledge that it’s a very, very good thing to have.

Another thing we did was embrace face-painting at every single festival we attended. This one was harder for me at first; I don’t like anything touching my own face, and on top of that I’m a little nervous to have her port wine stain touched or pressured. But once I saw how happy she was to have her (other) cheek painted with elaborate girly unicorns and hearts and stars, I knew we could use this to our advantage.

So we made face-painting into this huge deal, this happy thing that happens at summer festivals. She looks forward to it throughout the year, and when those festivals come, we celebrate with painted faces. Because painted faces are awesome. Because it’s a desirable thing, a worthy thing, a beautiful thing to have SOMETHING on your FACE. And pick your words so that, again, she absorbs the knowledge that having a mark on her cheek can be a good thing: you don’t just say, “I’ll get my face painted, too!” -– you say, “I want something on my cheek, too!”

We also started using more wardrobe statement pieces for ourselves. I realized that my little toddler was watching everything I did down to dressing for the day. And the sweet little copycat would later go into my closet and stand in front of my mirror and mimic my actions, clomping around in my heels. So I decided to talk out loud while choosing an outfit: “Hm, I like this shirt… and I’ll wear these pants because they look nice…Very classy… But, hmm, I think I need to have something noticeable, something bright that will get people’s attention -– here, I’ll wear this!” And I’d grab one of my hundred brightly-colored accessory scarves and tie it around my neck, or my biggest, shiniest, cheapest earrings and secure them saying, “There, this will make people say ‘WOW!’”

I’m a conservative dresser; no one ever said “Wow!” But day after day I told the mirror (and my copycat) that I wanted something to catch peoples’ attention and set me apart, even if just for a moment. Some days it was a bright scarf, other days those big cheap earrings, and sometimes a lovely hat, because no one really wears hats and I said it would make me ‘stand out.’ (Likewise, my husband occasionally started wearing a nice hat, too, telling Addy that he wanted something to distinguish himself from other men that day.)

Her port wine stain never came up while we were dressing in front of that mirror. But now, when her port wine stain comes up in conversation and we mention that it’s ‘a little different’ from the other kids, her face lights up like she’s just won a beauty pageant. And when she was getting ready to go to preschool with a bruised face a couple years ago, she expressed sympathy that the other kids didn’t “get to have purple” on their face like she did.

Embrace distinguishing characteristics; if you wear glasses, then you can tell the mirror (and your copycat) proudly that “not everyone gets to wear glasses,” as if you’re lucky for standing out from the crowd. I showed her my little cross tattoo to prove that I had wanted something unique so badly that I actually employed needles to get it (and I hate needles). I bought face paints and let the kids have a blast painting their cheeks (and noses and foreheads and ears) crazy colors, because face color is fabulous and beautiful and fun and happy. When Addy whispers loudly that she sees a stranger with something different (“Mom LOOK! He’s missing a leg!”) I whisper back like we just saw a movie star (“WHAT?! No WAY!”).

With effort, luck, and time, you can help her know that distinguishing marks are awesome, and that pink cheeks are awesome, and that purple is even more awesome. With that knowledge in place, talking about the port wine stain itself will be easier. Instead of being defensive toward the world, she’ll be comfortable in it with her own unique skin, because she’ll know that unique is fabulous.


About Jennica

Thought. Life. Faith. Shenanigans.

Posted on January 6, 2015, in 3. Addy Stories & Experiences and tagged , , , . Bookmark the permalink. 3 Comments.

  1. Jennica, thank you so much for the great advice! Sylvie will be 3 soon- hard to believe! Her last treatment was in mid November. She actually took the whole thing in amazing stride. As you did with Addy, I got her really excited about Dr. Spraker turning her face purple (which is also mommy’s favorite color, which makes it even more exciting 🙂 and that really helped! She was all smiles whenever she saw her face in the mirror. We have seen axing progress, and are now considering waiting 12 months before the next treatment. We initially did them every 3 months, then the last 2 were 6 months apart. We are going to consult with her doctor and decide. Finances do factor in because we have a very high deductible, so essentially after one treatment a year, the next one is basically covered. But, we don’t want to put her through an extra procedure of it is unlikely to make a big difference at this point. How often do you do Addy’s treatments? Do you have any recent pictures? I know every port-wine stain is different, and it seems as if Addy’s is more extensive and “stubborn” than Sylvie’s. Also? As an aside, Sylvie had her face painted for the first time over the holidays! I was a bit nervous about them doing it over be PWS, so I glad to hear I am not a crazy mommy :). Thanks again for your thoughtful blog!

    • That’s wonderful to hear!! I’m so glad she took the purple in stride; that’s a stressful moment as a mom, looking in the mirror with her after a surgery. I’m glad to hear that Sylvie’s PWS is responding well to treatment. When Addy was a baby, starting at 5 weeks old, we did treatments every month. Then, after a couple years, we slowed it down to every other month. When she was about 4, we slowed down to every few months. Since she’s been 5 & 6, we’ve only done a few surgeries a year. (I lost track around the time she turned 5, but we’re at 30-something surgeries.) Insurance plays a part, in that our dermatologist has found that insurance carriers typically require 90 days between surgeries, based on the guidelines that were (somewhat arbitrarily) put in place back when laser surgeries were new. (It’s like the doctors looked at this brand-new treatment back then and said, ‘well, sure, this will come in handy once every few months’, and that’s what got written down, locked in, and pointed to by insurance companies.) Our schedule also plays a part, since each surgery requires a pre-op appointment with her pediatrician the week before, which means a day off work this week for the preop, a day (or two) off next week for the surgery, two weeks in which to arrange next month’s appointments, and then we have to do it all again. It was a bit exhausting! As for the results: when we were doing laser surgeries monthly, the PWS color faded, and its ‘footprint’ on her face shrunk well. Great progress! But when we slowed down surgeries, we began seeing it again in places where it had disappeared, like on her forehead… So when we slowed down the weed-whacking, the weeds showed up again. Those blood vessels are growing with her. My advice is this: as long as she’s growing, do at least a few surgeries a year. Especially if you have a high deductible, and #2 and #3 are relatively cheap. 🙂 In our experience, you’ll want the surgeries just to stay ahead of the PWS growth. It’s a bit disheartening to see it return in places where you thought it was totally gone. However, that’s just our experience, and I totally understand that Addy’s port wine stain is unusually stubborn! Back when she was a baby, our dermatologist predicted that, if we were anything like the many other PWS children he’s treated, we would need between 12 and 20 surgeries… Here we are at 30-something, and counting! So our advice may not be universal. But I do know that, even early in our journey, the doctor advised us to treat the PWS as much as possible, as early as possible, because that’s when the best progress is made. Get ahead of the weeds! And unfortunately, now that we’ve slowed down (it’s so hard to schedule surgeries with school!) we’re seeing a stronger PWS. I took some pictures over Christmas break that I’ll try to post soon. I’ve found that it’s hard to get good pictures of her PWS, because our iPhone photos tend to ‘wash out’ so much face color. (I’m so pale that I practically disappear from them!) Thank you so much for your comments here; I’m glad to hear of your progress!

  1. Pingback: Talking to Addy (part 2) | What Happened To Her Face?

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