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Conversations with Millie

Over a year ago, a gorgeous young woman from London named Millie found my blog and sent me a wonderful note. We corresponded a bit and I’m copying excerpts of that correspondence here, because it’s context for the beauty you’ll see below.

But the real reason I’m sharing Millie with you, dear reader, is her beauty, her creativity and her confidence.

(And her incredible ART PROJECT.  You’ll see that below.  READ WHAT SHE SAID ABOUT IT.  All the rest is context.)

Enjoy.

 

Here is Millie’s first note to me last year:

“Hi,

I’ve written out three different messages and failed to send them but I will send this one!
Your daughter’s confidence and smile have been the light in my life when I’m feeling low about my port wine stain (uncannily similar as mine covers also my right cheek, lip, nose and forehead slightly!).

Regrettably, I have covered my birthmark with makeup since the age of 11 (starting high school – now 17) but previously felt no real qualms about my appearance; I was a confident, happy, feisty little girl.

Hitting such a low of wanting facial reconstruction surgery a few months ago, the beauty of your daughter has been my inspiration to accept myself and use my suffering as a tool for creativity and awareness.

Turning 18 in May, I’ve decided I won’t let something which I have no control over determine my life, and have been practicing looking people straight on and in the eye (something unthinkable less than a year ago). I am trying to diagnose my reasons for hiding part of myself and my consequential shame of my appearance.

I am using my final A-level art project to look at changing society’s perceptions of physical differences. Your website and Adelaide have been a huge inspiration for this. I hope to someday meet my role model!

My sincere gratitude,

Millie, London”

 

Even without ever having seen Millie, I grabbed the chance to point out the beauty in a birthmark like Addy’s  (after all, I know the shape of that stain by heart):

“… Parenting [Addy], and pondering her stain, I’ve come to appreciate that every human, no matter what their appearance, struggles with their uniqueness. None among us is anatomically perfect; some simply have more obvious imperfections. Slender runway supermodels wish that they had Sofia Vergara’s curves, while Vergara-esque curvaceous babes wish they had Heidi Klum’s legs. Even the greatest beauties can point to another human’s unique features with envy.

…Or, said a different way, any beauty can point to her own unique features with contentment. I wish more would; so few do.

I want to share with you something that occurred to me shortly after Addy was born: look at the*sweep* of her (and your) port wine stain. The way it starts in the middle, then sweeps upward as it goes toward the hairline?

Now look again at all those makeup advertisements in magazines and on billboards. Look at what they tell you to do with your blush, your bronzer, your eyeliner, your eyeshadow, even your hair: “Sweep up” for the most flattering effect on feminine features.
Look for “the sweep” in other places, too – the shape of a basic Venetian carnival mask, for example; it sweeps away from the eyes, out and up toward the hairline. Instant glamour.

Everyone else needs masks, makeup and hairdos to approximate nature’s flattery; you and Addy were born with it.”

 

After Millie’s final art project was complete, she sent us THIS:

“…I have just handed in my A-Level art sketch book and final piece, and, as I mentioned, decided to look at changing society’s perceptions of beauty. I ended up using this as a tool for experimenting with my own appearance and difference: my port wine stain.

I played with typically beautiful images in society (BAFTA awards, the cover of Vogue, art work, etc. that we automatically accept as beautiful) to display differences. I played with the idea of symmetry, using a butterfly, and used makeup to emphasise rather than hide my birthmark.

I decided to do a final piece which celebrated my birthmark, using the artists Gustav Klimt and Chris Ofili as decor inspiration.

This was a strange, terrifying and liberating experience, but I am so glad I have done it. Your blog really was a turning point for me; rather than crying about my mark and wishing it wasn’t there, I am now seeing it as an opportunity. I think about what you said – the upward swish complementing natural beauty where others need makeup.

When I went for my last laser, I couldn’t wear makeup; so even in the car to the hospital I didn’t allow myself to make eye contact with anyone for fear of seeing them stare… Every time I do this it’s very strange but again, liberating, especially this time because I didn’t try to hide… After a few weeks (of not wearing makeup while the bruising went down) I actually went for a no-makeup run with my sister — the adrenaline made me run faster!

… I have grown in the sense that I now wear makeup for society rather than for myself… When I’ve cried to my mum, she said ‘patrons and people who change the world don’t have it easy.’ I want to somehow help society see that different doesn’t automatically mean bad.

Millie-young2

Pre-butterfly…

Butterfly

Wow.

After picking myself up off the floor at the gorgeousness of her face and Klimt-inspired work, I replied:

“Thank you so much for sending!! …I’m thrilled, inspired, and humbled to have served as any sort of encouragement on your journey! It can be hard to forge something new. So many people tie beauty to perfection without realizing it, and even those who are trying to embrace imperfections make the same mistake by hushing any admission of ‘error’; it feels quite liberating to admit that something’s an error, and still see that it’s beautiful.

I’d love to see more of your project!”

 

Luckily, she obliged, and explained her project in a bit more detail:

“I have [attached] a photograph of the BAFTA award I made using a cast of my face, then sprayed bronze and filled in my port wine stain with gold leaf. (I purposefully made the birthmark worth the most).

[BRILLIANT, no?! Read that part again – she made the birthmark worth the most…

She continues:]

There is a picture of my final piece: a mixture of oil painting, collage, gold leaf and mosaic. I included the butterfly picture I worked from as well.

…The theme set by the exam board was ‘Flaws, Perfection, Ideals and Compromise’ which basically set up a stomping ground for me to play around with this, which I’ve wanted to before in my art but couldn’t out of fear and shame. This time it felt a little different…

 

BAFTA (2)

Project

WELL DONE.

(We’ve enjoyed more correspondence since then, but for the sake of brevity I will leave this exchange as is here.)

Enjoy Millie’s art, dear reader. She is a treasure!

Millie-young1

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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“Another port wine stain! Sshhh…”

Confession: As you’ve seen here, I get excited when I see someone else with a port wine stain.  Really excited.  But suddenly, I face That Dilemma, now from the other side: do I ask them about it?

Running through my head: Will they think I’m too forward?  Am I touching on childhood trauma?  Do they hate their port wine stain and hate their life and hate their bullies and hate their parents?  Will I bring all that up by being one *more* person to remark on it?  Or, worse, will they think I’m a backward hick who’s never seen someone different?  Will they patronize me and give me a lecture about how we’re all alike inside in spite of our physical differences and I shouldn’t even notice differences like that?

But… I’m on your team, man!  I want to know about your stain!  What’s your story??  What have you learned?  What should I tell my daughter?  Did you treat it?  Why?  What was it like?  Would you do it again?  Do you ever cover it up?  What else do you know about it?

Usually, all this panicked thinking takes too much time and I just end up casting long, meaningful glances in their general direction while we’re standing in line, and hoping they’ll look up and suddenly notice a comrade in my daughter’s lovely similarly-port-wine-stained face, but instead they pay for their latte and walk out, perhaps vaguely aware of some stalker-like presence nearby.

Maybe next time.

Siblings & Classmates

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We have three children: Addy is 7, Clarence is 5, and Eloise is 3.  The younger siblings’ awareness of and reactions to Addy’s port wine stain are amusing: a combination of childhood oblivion and concerned observation.

When Clarence was younger, he’d point to Addy’s baby pictures: “That me!”  “No, sweetie, that’s Adelaide.”  “NO! That ME!”  We’d point to the rather obvious port wine stain plastered on the baby’s face: “Clarence, look at that stain – you don’t have one of those, only Addy does.”  He’d stare at it for a minute, think about it, then firmly shake his head.  “No, that me.”  Okay, dude.

Eloise did the exact same thing when she saw family pictures.  It wasn’t until they were about 3 that either one showed any signs of recognizing the port wine stain’s existence in the picture and connecting it to their sister.

Two or three days after her latest surgery, which left her cheek quite bruised, we were sitting around the dinner table when Elly (age 3) suddenly stopped eating, stared at Addy for a long moment,  pointed to her cheek and asked, “Addy, what that?”  Yes, it took three years of life and three days of bruising for the youngest sibling to notice anything out of the ordinary.

When Clarence was three, he saw Addy’s bruised face after a particularly intense laser treatment and became quite concerned: “Addy! That blood!”  She laughed it off and shrugged, “No, that’s just my port wine stain.”  He stared.  “No, Addy, that blood!”  It took some work to convince him that his sister was fine, and that such bruising had, in fact, happened regularly in his first three years of life.  He’d just never noticed it before.

Clarence recently told me, “I want to have a port wine stain, mom.”  “Really?  Why is that?”  “Because port wine stains are good.”  Awww!  My mommy heart swelled with pride knowing that clearly, I’ve done such a stupendous job parenting tha–   “And because Addy gets toys like her new Olaf toy and her new Olaf blanket when she goes to the hospital, and I want an Olaf blanket.”

Priorities, right?  He just wants the goodies.  I can’t blame him; that new Olaf blanket is pretty sweet, as you can see in the picture.  (By the way, on that thought: A million thanks to the volunteers and donors who keep Children’s Hospital stocked with the awesome toys that comfort & distract kids during medical procedures; it’s stuff like that that keeps our Addy looking forward to her hospital trips!)

As far as classmates go, whenever Addy has a surgery, we prepare her for the fact that, because she’s going to school with a newly dark-purple face, people will probably notice it and ask her about it and that’s totally okay, because it means they’re concerned, and that’s awesome.

But recently, no one has asked.  And I realized something – it’s old news already.  She’s at a small school; all the K-12 class sizes are 10-20 kids each, she knows upperclassmen by name, and they know her.  In other words, pretty much everyone in that building has seen her bruising before.  She walks in with a purple face?  Nothing new.  She gets more double-takes when she leaves Children’s hospital, which makes sense, because those strangers have never seen her before.  (In fact, one little girl in the lobby gasped excitedly, “Mom! Look! That girl has a painted face!” like it was the coolest thing she’d ever seen.  I love kids.)

While familiarity may sometimes breed contempt, it can also breed boredom; in our case, that’s a very good thing.  As long as Addy is small, surrounding her with the same people regularly for whom her suddenly-purple face is ‘nothing new’ minimizes the stares and questions she gets throughout her day.  I will always be happy to expose her to the world, to empower her to answer strangers’ questions with grace, and to build her confidence in facing society with a unique face, but I’m also relieved that in her daily routine, she can relax among a few friends and family who know her face so well that there’s nothing left to ask.

Unless she comes home with a sweet new Olaf blanket and stuffed toy.  Apparently, that’s enough to pique brother’s curiosity all over again.

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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.

Keith’s Summary of Last Week’s Dropoff:

As promised – the following is a quick summary from Keith, which he wrote after dropping Adelaide off at kindergarten with her purple-bruised face.  (And by the way, Happy Thanksgiving, all!)

Yesterday, Adelaide had her first laser surgery for her port wine stain since kindy (kindergarten) started. Jennica and I have been warned that kindergarten is when kids “become more aware” (polite code for “get nasty”) of port wine stains.

This morning I dropped her off.  I really wanted her to be her normal happy self. I thought, “if she can just do that so that the other kids are comfortable, and therefore more willing to engage her, she might have a much nicer day.”

And, I thought that I would cheat a bit. I opened a Halloween-sized pack of M&Ms and handed it to her, hoping to pump her up on chocolate-released endorphins. (Don’t judge.) She ate two and handed the little packet back to me saying, “No thanks, Dad. I don’t want to have too much sugar before kindy.”  

Yes, my five-year old is now more responsible than I.

Her first two interactions were in the hall before class. The first was with a tall girl who stood staring at Addy Rae, with a forced ‘I-like-you’ smile, while she listened to Addy talk. Then, she nodded politely and went into the room without saying a word. Addy had a ‘that-was-odd’ face, but wasn’t at all bothered. (Later, the teacher told me that she had prepped the class on how to be polite. Good effort, sweetie!)

Her second interaction was with Mikey (alias).  Mikey stumbled down the hall to hang his coat up but stopped when Adelaide accosted him with a bombardment of words. He stood staring at her with the same ‘it’s-morning’ scowl that he had been wearing the whole time. Then Addy said, “Mikey, I look different today. Can’t you tell?” Mikey smiled, nodded, and they both laughed while he put his coat on the hook.

Man, I love that kid. (Addy, that is. Mikey’s okay.)

Ask? Better not…

A few weeks ago I took my two youngest kids on a routine trip to Wal-Mart. (Don’t judge – as soon as Trader Joe’s offers carts with locking straps for multiple kids and enough inventory to render further errands unnecessary, I’ll be the first one in the door; until then, it’s Wal-Mart.)

As I was saying – I took the two little kids shopping and, as usual, one of them had to go to the bathroom halfway through the shopping trip. So we made our way alllllllll the way to the back of the store, past the bikes and kid toys (seriously, I know your game, Wal-Mart), to the Family Bathroom right next to the employee break area and the “Apply for a Job Here” kiosk. While I was unloading my offspring from the Awesome Multi-Kid Cart, I noticed that the guy at the computer kiosk applying for a job had a port wine stain JUST LIKE Addy’s. But darker. It was pretty cool. And I wanted to know more.

But wait… I don’t dare ask about it. But, man, I WANT TO. I really want to know about this guy and his port wine stain, and on a scientific side I’m FASCINATED by the resemblance to Addy’s – this must be what Addy’s would look like if it was never treated… and it’s dark… really dark… which means it was never treated… So, I wonder if he suffered through it before treatment options were available, and therefore hates the very mention of it… or if he chose to keep it even after treatment options became available, and therefore loves it…?

Ahh, crap. Never mind, kid’s gotta pee; we disappear into the restroom, and when we see him sitting there a few minutes later, I still have no idea what to do, so I just keep walking and say nothing, leaving him there to click away at the kiosk alone.

I wonder what his story was.

Close Call

In Wal-Mart today, we passed a little girl, maybe a year or two older than Addy. My little social butterfly gave her a smile and a small wave from our cart, and the little stranger returned the favor, studying Addy closely as we passed by. Before we had completely passed, the girl turned to her mom and said in a loud, excited stage whisper: “Mom!! Did you see her face?!”

I kept pushing the cart nonchalantly, watching Addy closely to see if she had heard. Seemed not to. Just to be safe, I casually said to her, “Addy, you really are a beautiful girl. I’m so glad to be seen with you.” (We compliment our kids a lot, so this wouldn’t be unusual.) She smiled: “Thanks.”

I wonder how she would have responded.

Funny – the port wine stain is so much lighter than it was when she was born, I’ve just assumed that no one really notices it. But over the last year, those blood vessels have grown along with her, making the port wine stain a bit darker (and wiping out some of the fabulous progress we’ve made with all those laser surgeries). So we’re getting more comments than we were, say, a year ago.

Speaking of surgeries, I’ll post soon about the awesome treatment we got at Children’s hospital last month. 🙂

“Hi! I Have a Port Wine Stain.”

Tonight Addy was playing with friends outside when she walked up to the other girls’ mother and announced: “I have a port wine stain.”

It was random, but that’s not unheard of with Addy, a social butterfly who will grasp at any possible seeds of conversation. (She once greeted a friend of mine with: “I’m just wearing undies under my dress, no shorts or leggings or tights, because it’s too hot for leggings now that it’s summertime, so just undies.”)

So I’m used to the random conversation starters, but this was THE first time she’s ever announced her stain. To anyone. She’s talked about it recently, yes, but never announced it first.

Which makes me wonder: is she just aware of it more now (with the recent treatment and Dream Night, each of which I’ll tell you about in posts soon), or more self-conscious of it now?

Self-awareness or self-consciousness? And how do I keep the one from becoming the other?

(Note: As in my last post, I openly ‘debriefed’ my mom about it when Addy and I were back inside Nana’s house, I proudly/nonchalantly told Nana about it in front of Addy. Just trying to set a precedent…)

Addy’s Answer

Addy has become more aware (and conversant) of her port wine stain – the other day we were walking down our street when a little 3-year old girl politely asked Addy “What’s on your face?” With great self-control, I kept my talkative mouth zipped shut and waited to see what Addy, now 5, could say on her own. A moment’s thought, then: “It’s my port wine stain from Dr. Zelickson.”

(Sweetie, he didn’t give it to you, he just treats it, but whatever, close enough.)

It was a small milestone! She was directly asked about it (instead of me) , and she answered it herself, matter-of-factly and (almost) correctly. She didn’t stumble, she didn’t seem embarrassed.

I know she’ll have more of those conversations (especially with school starting in the fall), so Mommy is glad to see her handle the simple question all by herself. 🙂

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