For rose-moles all in stipple upon trout that swim;
Fresh-firecoal chestnut-falls; finches’ wings;
Landscape plotted and pieced – fold, fallow, and plough;
And áll trádes, their gear and tackle and trim.
All things counter, original, spare, strange;
Whatever is fickle, freckled (who knows how?)
With swift, slow; sweet, sour; adazzle, dim;
He fathers-forth whose beauty is past change:
After Addy was born, Keith and I had to decide whether or not to pursue treatment for her port wine stain.
It’s odd – you have this beautiful baby girl, and you know she’s absolutely perfect, but there’s something you have to “fix.”
We were 90% certain we would treat the stain… In hindsight, I realize the only reason it wasn’t 100% was because we felt that, by treating it, we were acknowledging that it was a blemish. And we didn’t want her to see it as a blemish.
But over time, I learned something rather profound: you can both call the error and call it beautiful. An the fact is, the port wine stain is an error, a mistake that occurred in development; trying to label it anything else deviates from the truth. But that doesn’t mean it’s not beautiful.
And once you wake up to that truth, you realize how much of this beautiful world is so, not in spite of, but because of the errors. It’s the deviations from “perfect” that we find interesting, lovely, attractive. A towering, twisting oak tree gnarled by age and storm; the jagged edges of a rock cleft by violent wind and ancient water; those tiny little pigment mutations sprinkled on the nose that we affectionately call “freckles”. The tree, the rock, the skin… all deviate from their error-free Platonic ideal, and yet all are more beautiful for those deviations.
So, we face the error honestly. We zap the invasive blood vessels that have masked our daughter’s face from birth. And yet, every step of the way, we affirm not only her beauty in general, but the unique beauty of her face for the lovely error she she’s blessed to bear.
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.
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.
In honor of last week’s Halloween festivities, I thought I would share our family pic from Addy’s first Halloween five years ago, in 2008.
Keith and I had realized that, with all her laser surgeries, it might be the only Halloween in which Addy’s port wine stain was visible enough to be part of a costume.
So we decided to have fun with it.
We figure we can either make her port wine stain into something to be hidden (and therefore ashamed of), or something to be openly acknowledged and celebrated. And our choice has been to accept life, and the stain, as it is. And to have fun with it.
So, yes – I dressed her up as a Dalmatian puppy. And called her “Spot.” You can probably figure out my costume. 🙂
Hey, I have to give her something to hold against me as a teenager…
Okay, kudos to the parents of a Starbucks barista who was working down in Indianapolis sometime between 2008 and 2010 (and may still be there) – you did it right. Not sure what you did, because I have no idea who you are, but I know you did parenting right.
Here’s the story: a few days after Addy was born back in 2008, my uncle from Indianapolis called to tell us that he had just been served by a Starbucks barista sporting a port wine stain like Addy’s, and that she was supremely outgoing, lovely and confident. Her parents, he said, had clearly raised her to be comfortable with herself, in spite of (or especially with?) the port wine stain painted on her face. Our family here in the Twin Cities cheered – then we could do that, too!
Randomly, two years later, my husband’s mother’s cousin (seriously) traveled through Indianapolis, stopped at a Starbucks, and saw a lovely barista with a booming personality and a distinct port wine stain, who clearly loved herself and her face. Cousin was so impressed, she just had to tell our family. And we cheered again.
So, well done, Starbucks barista – your beautiful personality and confidence in yourself have inspired our family. And kudos to your parents, whoever they are, for whatever they did to raise you well. You’re lovely and you know it. Keep it up.
So, I decided to throw a few treatment tips on here, for those of you looking at treating your child for his or her port wine stain (or, really, anything).
#1: If you bring your kid in for a laser treatment, or ANY treatment, in ANY medical setting, remember this: YOUR CHILD’S CONFIDENCE WILL REFLECT YOURS, SO CHOOSE YOUR ATTITUDE WISELY.
Think of your kid as a lake; you’re the sky. If you’re sunny and bright, they’ll reflect sun & brightness, too. If you’re cloudy & moody, they’ll turn grey & moody, too.
We see this all the time with kids at Children’s Hospital. Kids come happy, ready to play with the toys in the surgery waiting area, and within 10 minutes they’ve absorbed their parents’ tension and worry. They know Something Bad is coming. Something Scary. They’d better sober up and look serious.
Meanwhile, the kids with relaxed parents are carefree, having fun playing with toys and chatting up the nurses. I’m lucky that my husband, who was a stay-at-home dad for Addy’s first two years, is naturally relaxed and very social. So whenever he took Addy in for surgery or shots or anything stressful, he talked her through the whole process (even when she was a baby), straightforwardly counted to three to warn her of each shot (since surprise shots are NEVER good), laughed with her when they were over, and chatted with the medical people so that she could see him being at ease with all these medical strangers.
Knowing that we had a lot of treatments ahead of us, we couldn’t afford for her to be anxious in the medical world. It made a difference; Addy loves going in for treatments, since each one is An Occasion: they’re fun, they’re social, and she gets to play with new toys. She loves doctors and nurses. She talks to patients and personnel. She knows that Everyone is There to Take Care of Her.
A few months ago we ran into her pediatrician, Dr. Steelman, (whom she has seen for each pre-op appointment for every laser surgery since she was 5 weeks old, along with all of her normal well-child visits since she was born) at a restaurant. Surprised and excited to bump into him, her eyes widened and the first words to tumble out of her mouth were: “UNCLE STEELMAN!” That’s how much affection she has for her doctor.
Your child’s watching you, ready to reflect whatever face you present. Have fun with this. Nurse offers you guys some stickers? AWESOME!! A popsicle? BEST DAY EVER!!
Addy receives laser treatments on her port wine stain at Children’s Hospital. She underwent her first treatment at 5 weeks old; now, she’s had about thirty. (I lost count somewhere in the mid-20s.)
I can go into more detail about these procedures later, in case other parents are interested; for now, I just want to use this post here to say thanks to Children’s hospital; even after 30-some trips there, we (especially Addy) still look forward to going in each time.
– At Addy’s last surgery, they removed a (very, very) loose tooth while she was under anesthesia, so that it wouldn’t suddenly fall out during the procedure and become an airway risk. So… the awesome Dr. Zelickson sent her back post-op with a pink box holding the tooth and some tooth-fairy money. (Including a $1,000,000 bill.) 🙂
– The staff in the surgery area know us so well that they helped come up with baby names for little Eloise when I was pregnant, they ask where her little brother is if I leave him with a babysitter, they bring Addy’s favorite toys before she even has to ask, and they remember that her favorite flavor for the anesthesia mask is pink bubblegum. I know they see a ton of patients, so the fact that they’ve gotten to know and remember Addy makes her mama feel good.
– This one may be obvious, but it’s worth pointing out: these folks know kids. They know them, they understand them, and they treat them as their own species, and not as small adults. Their physical needs and risks are completely different than adults’, and they carry the potential to develop a lifelong fear of medicine with a single bad experience. No pressure, right? And even after all her trips, Addy still loves doctors, nurses, techs, and anyone in scrubs.
– Through “Dream Night,” Children’s invited us, along with other kids (& their families) to spend an evening at the Minnesota zoo: free zoo pass, dinner, stuffed animal, access after closing time, and all sorts of fun, with other families from Children’s, Gillette’s and other hospitals. Needless to say, it was awesome.
So, thank you, Children’s Hospital (and all patrons, donors and supporters) for taking such good care of us. Even after 30-odd trips, Addy’s already asking me when we get to go in for another treatment.
I almost forgot the follow-up!
After the brief Q&A with the neighbor girl (prior blog post), we got back to our house and I made a point of openly talking about the encounter to Daddy, in front of Adelaide.
I said, “By the way, Daddy, the neighbor asked about Addy’s port wine stain!” “Really? [Happily, like I just gave him good news.] And what did she say?” Addy piped up: “I said it was my port wine stain from Dr. Zelickson.” “That’s wonderful, Addy! It’s cool that she was curious about it.” To which Addy nodded slowly, processing, then agreed happily: “Yes, it is!”
Why debrief? Because I want Addy 1) to know it’s fair game for open conversation – something she can bring up casually with us, 2) to get into the habit of debriefing us after those little conversations (keeping us in the loop when any negative ones come up), and 3) to put a positive spin on it.
Did I want to? No. I feel awkward talking about it, honestly. But I don’t want to spread that feeling to Addy. So it took some effort to bring it up, but I’m glad we did. Just seeing her absorb Daddy’s enthusiasm was worth it. 🙂