In response to a dear reader’s inquiry, my last post discussed how we prepared Addy for the concept of having a huge dark-pink mark on her face; in this one, I tell how we actually talked about the port wine stain itself in more concrete terms.

As you’ve probably noticed in parenting, kids are oblivious to some things for an amazingly long time. For your child with a port wine stain, as long as she ignores it (or is oblivious to it), you can ignore it, too. You don’t want to force the topic and make it ‘An Issue’ before she’s ready. As I mentioned in my last post, only worry about laying the groundwork for her to believe that a distinguishing mark is a *good* thing.

But that oblivion doesn’t last forever, and at some point she notices it. She also becomes aware that all those comments from other kids and adults do, in fact, refer to her. She realizes that there’s something on her face, something others don’t have. This stage I found very, very tricky; you want to beat the world to the punch, you want to be the first voice she hears regarding her stain, her first impression and the last word. But you don’t want to make it ‘An Issue.’

So what do you say? Facts. This is the stage to be factual, neutral, and yet still calmly positive. Let her absorb the facts: That her face is pink (or purple). That it is a port wine stain. That she has a port wine stain. That Mommy does not have a port wine stain. Simple facts can be profound to a toddlers and preschoolers as they order their universe, so offer factual comments with a positive, contented attitude. The universe is in order; all is good.

If you catch her staring in the mirror at her port wine stain, offer a simple comment: “That’s your port wine stain.” Say it with quiet gladness, like you’re a garden-tour guide answering a question about local flora on a summer day: “That’s a purple lilac bush.” Pleasant, and neutral. Just a nice fact.

I found it helpful to focus on the words themselves: make this a language lesson. Toddlers are constantly learning how to speak and annunciate, and they’re thrilled with their accomplishment. “Can you say Port Wine Stain? Good! That’s right, po-oh-rr-t, make sure you say the ‘t’ there…” This accomplishes 4 things: 1) she knows it’s not a taboo topic, 2) you open the door to any questions that might be simmering in the back of her little mind that she keeps forgetting to ask you, 3) you’re empowering her to answer strangers’ questions for herself by speaking it clearly, and 4) there’s no pressure to Have A Talk about it. You’re just working on speech, that’s all. Happily.

After a surgery, she might stare longer at her reflection, observing the new shade of purple on her cheek. Sometimes just a solidly honest “You are so beautiful” is all she needs to hear; it’s enough to tell her that all is good with the world. “Yep, whew, I’m still beautiful, good, moving on.” Sometimes she’ll need a little more from you, as Addy did when she stared bug-eyed at the mirror at some especially intense post-surgery bruising: the reaction I used is the quietly-rolling “Oooooo!” that we adults use when we see an intriguingly lovely exotic fish in an aquarium: calm, admiring, hushed, and affirming yet neutral – “Ooooo, look at that amazing shade of blue.” “Ooooo, look at that, Dr. Zelickson really did a wonderful job with the laser surgery today.”

Then immediately start another language lesson: “Can you say, ‘laser surgery with doctor Zelickson’? That’s right – lay-zerr…” and so on, until she accomplishes the sentence. Then she’ll proudly show her accomplishment off by announcing “It my lay-zer zur-dur-ee wit doctuh Zeckickdon” to anyone who’ll listen. And when you see your daughter proudly (proudly!) telling others that her face is purple from a port wine stain treatment… it feels pretty awesome.

One last piece of advice I got from my mom: don’t call it a beauty mark. I called it that a few times when Addy was a toddler, in an attempt to soften the topic and make her feel good about it. As my mom pointed out, if I were to tell Addy that it was a beauty mark, I’d be setting her up for disappointment at the first reality check when a blunt playground kid impulsively responds: “No, it’s not.” Don’t attach beauty to its title. Call it what it is – a port wine stain. You can separately help her understand that her port wine stain is beautiful (as in my last post), but don’t tie its presence or absence to beauty. Just be factual and honest, with a pleasant demeanor every time. She’ll learn to accept the stain matter-of-factly, she’ll understand that it’s not a bad thing, and she’ll be equipped to face the world herself, big words and all.

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.