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Talking to Addy (part 1)

FacePainting

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.

FacePaintingComplete

Talking to Others

A dear reader (whose daughter has a similar stain) asked me the following question:

“…I do struggle with how to respond when people ask questions about her face, especially after a treatment. I want to educate them, but at the same time, I don’t want to be judged. I don’t think the average person understands how extensive these port wine stains become with age and without any treatment. Do you have any advice on how you respond to these types of questions?”

Why, certainly. 🙂

First, don’t worry; there will always be people who disapprove of your decisions. They can’t do anything about it, so let them stew.

Second: my rule of thumb is to always (always!) strive to make the other person feel comfortable. Not only is it kind, but in our cynical culture it’s also unexpected, and therefore disarming to any potential jerks. (In other words, if they’re expecting me to be defensive and I’m not, they soften up immediately. Works like magic in most of life, actually.)

So, kindness is key. But how do we make others comfortable when we’re toting a small child who looks like she’s been in a barfight? And in only a quick minute or two of passing conversation?

I’ve found myself using the following lines the most – they’re simple, they sum up the problem quickly, use imagery that people understand, and are casual & humorous enough to put people at ease. Sprinkle them into the conversations as you wish:

• “Oh, she’s fine, she just had another laser treatment for her port wine stain.”
• “It’s a proliferation of blood vessels – basically, they never got the signal to stop growing in utero, so they just keep growing, and growing, and growing.”
• “The laser zaps them – they heat up, explode and die. So then we can zap the next layer – there are a TON of them.”
• “It’s like weed-whacking – those vessels are constantly growing, we’re just beating them back. The sooner, the better.”
• “Yep, as she grows, the blood vessels keep growing with her. The whole thing will get thicker and darker and even nodular over time. It’s crazy!”
• “It’s not a big deal, we just have to keep weed-whacking for a while, that’s all.”
• “We’re going in for another zapping next week.”
• “I think it’s pretty much the same thing they do for varicose veins.”

The ‘weed-whacking’ analogy clicks with people – they suddenly ‘get it’ that this is a long-term process against constant growth, and it makes them smile. (Who hasn’t battled weeds in their yard?)

‘Zapping’ also sounds casual and surprisingly noninvasive, and makes people smile. (What kid hasn’t shuffled their stockingfeet on carpet and zapped a door handle?).

Pointing out the relation to cosmetic surgery seems to make people more comfortable that this is a simple, noninvasive procedure.

When you speak with easy confidence and a smile, rolling your eyes at how these blood vessels just keep growing (and growing, and growing), waving your hand when you tell them “Oh, she’s fine,” and shrugging when you tell them she’s going in for another zapping soon, they’ll usually relax. You’re cool with it, they can be cool with it, too.

When you’re with your close friends and confidants, you can relay your anxieties, fears, and worries – after all, this is your daughter and there’s a lot to worry about. But as long as you’re in casual conversation, just make people comfortable, and you’ll find that most respond with kindness.

Variations: Not all port wine stains are the same…

Okay, so now that we know that a port wine stain is, for lack of simpler words, a ‘proliferation’ of blood vessels along a nerve, I can tell you that recent research (which you’ll stumble across if you Google ‘port wine stain’) has determined that it is not hereditary.

The problem is simply a mutation that happens somewhere along the way as the fetus is developing. If it happens early (and therefore multiplies itself as the fetus grows), then you end up with a bigger, deeper, port wine stain. If it happens later in development, then you see a smaller, lighter port wine stain.

We’ve met people with varied port wine stains, from a little light-colored “Whatdidya spill there?” spot on a cheek, to Addy’s “Woah! What is On That Baby’s Face?” mask, to a half-bodied “Is that a purple tattoo?” job.

Again (and this is really important), these are not hemangiomas, they are not strawberries, and they will not go away on their own. But they are often all lumped together, since they are all ‘vascular malformations.’

Oddly enough (for a problem that’s not genetic), my third child Eloise was born with another “vascular malformation” – in this case, a hemangioma on her tushy. How do we know it’s a hemangioma, and not a port wine stain? Because that bright-pink little splotch is raised & bumpy; a port wine stain is dark and flat (to begin with). So, we can be reasonably assured that this pink little splotch, unlike a port wine stain, will eventually fade away as she grows.

In any case, I don’t care how long it takes that hemangioma to fade. It’s on your butt, sweetheart; I’m not paying to get that sucker to get lasered off.

Treatment

I’m just one parent here, so all I can tell you about is my own experience: we took Baby Addy to a dermatologist who specializes in treating kids with port wine stains (Dr. Zelickson, you’re awesome) with pulse-dye laser treatment.

Basically, he hits Addy’s port wine stain with a yellow laser; because of the color spectrum, the red blood vessels absorb the yellow light, heat up, explode and die. When they die, they leave purple bruising behind, which clears up within a week. Overall effect: fewer blood vessels. And then we hit them again. And again.

In layman’s terms, it’s weed-whacking. The blood vessels grow as Addy grows, so we hope to weed-whack those suckers faster than they grow with her. That’s why we attacked them early (while they were young, easily-killable weeds), rather than waiting until she was older and the vessels were larger, tougher, and more numerous.

Results? Awesome. The stain is smaller and lighter. But because Addy’s happens to be more resistant (how appropriate for my stubborn eldest), we’re still weed-whacking after 30-some treatments, instead of the 12 to 20 they originally told us she might need. (It’s always hard to estimate, because each stain has different size & depth) But the progress so far has been fantastic. People mistake her stain, which previously lived up to its ‘port wine’ nomenclature, for a sunburn. Yessssss.

Each treatment requires Addy going under general anesthesia, since powerful lasers pointed at a squirmy child’s face would otherwise be cause for concern. I know some dermatologists just use local anesthetic or numbing cream (particularly for older kids or smaller stains), but as far as I can tell, Dr. Z. puts all of his kids under general anesthesia as a precaution.

In other news, I’ve heard that there might be some application for newly-improved cancer treatments to port wine stains: new cancer treatments cutting off blood supply to tumors (depriving them of their lifeblood) could potentially be applied to wreak equal havoc on the blood vessels of port wine stains. I shall stay tuned…

What is It?

For those of you who wonder what exactly a port wine stain is (and either haven’t Googled it or are overwhelmed by the search results), it’s basically a wild proliferation of blood vessels – they never got the signal from their nerve to stop growing. 

Normally (and this is totally “Port Wine Stain 101” in layman’s terms, so double-check all this and any questions with a legit M.D.), the nerve sends a signal to its associated blood vessels to stop growing while the human is developing in utero.   Now, look at a human face from the side, and imagine three branches of the facial nerve running from the ear to the center of the face: one high (up along the forehead), one middle (straight to the nose), one low (along the jaw).  Each of these branches has blood vessels associated with it.  In Fetus Addy’s case, the middle branch of the facial nerve was the delinquent one:  somewhere along the way in utero, that nerve never gave the “okay, stop growing now” signal to its associated blood vessels, and they just kept growing.. .and growing… and growing, until they were a huge tangle (TONS of them) and huge themselves (with diameters MUCH bigger than a normal blood vessel). And, voila, a port wine stain.

These are not hemangiomas; these are not strawberries; they WILL NOT FADE with time.  In fact, as long as the body is growing… the blood vessels will keep growing, too.  So, in Newborn Addy’s case, we could expect that red port wine stain to turn purple.  And, eventually, thick and nodular as the blood vessels grew and tangled and grew some more.  Hence, our choice to zap it – and to start zapping it as soon as possible (before those blood vessels grew thicker and hardier).  For Addy, that was at 5 weeks old.

So this, hopefully, answers the basic “what is it?” question.  Soon, I’ll go into more detail about variations (because not all port wine stains are the same), recent research discoveries, and treatment (yay for pulse-dye lasers!).

“A Painting”

(It’s been a while – sorry.)

Siblings. They’re as honest as every other kid out there.

Addy (who is now 5) just had a laser surgery, which makes her port wine stain darker and a bit blotchy with bruising. Clarence, her 3-year old brother, just noticed it – he pointed to the stain and said “That’s blood!” Addy corrected him nicely: “No, it’s not.” “Yes, it blood.” I interrupted: “No, buddy, Addy’s not bleeding.” “Yes, it blood.”

So Addy explained, “It’s my port wine stain from Dr. Zelickson.” (Close enough.)

Then she added (repeating what she had told me a few days earlier when we talked about going in for another treatment), smiling and touching her cheek delicately, “I pretend that this is a painting.”

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