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.
After Addy de-fogged from her last surgery, she wanted to see what her face looked like. She knows that each laser treatment brings bruising – sometimes darker, sometimes lighter. I didn’t have a mirror with me in the hospital room, so I grabbed my phone and flipped the camera on so it could act as a mirror. She stared at herself for a minute, then observed the bruising with a matter-of-fact, “Well, that’s purple.”
And with that, she moved on to silly selfies. I love her comfort level here, so I thought I’d share a few. She’s post-op, she’s bruised, she’s aware of it, and she’s over it. Her face will definitely garner some double takes when we leave, and that’s okay.
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.
Last week was our first experience sending Addy to Kindergarten with a purple face (bruised from Monday’s laser surgery).
And we have heard from many (more experienced parents, teachers) that kindergarten is around that age when kids transition from cute little ‘Curious Preschoolers’ to largely self-aware and potentially cruel ‘Big Kids’.
Yes, we were apprehensive. Here’s how we handled it ahead of time:
1) Control the Big Picture: We’re sending her to the same little K-12 school she attended for preschool. Which means small classes (like, a dozen kids here), some familiar classmates, and similarly religious families, all of which help tilt the odds in favor of a kindly reception. It’s not foolproof, but I’d be more apprehensive launching her purple-faced into a kindergarten full of 30 young semi-strangers.
2) Talk to the Teacher: We spoke to the teacher, Mrs. K., a month or two ago to give her the heads-up that this would be coming. She (awesome lady!) offered to let Addy speak to the class in a sort of “Q&A session” to explain her bruising when it occurred. (A chance to be the star? Diva? Center stage? Yes, please!) That way, all the questions can be openly asked, the kids can get all the stares out of their system, and Addy’s in control while it happens. Brilliant woman, this teacher.
3) Teacher to Students: When Keith brought Addy to school, Mrs. K. told him that she had spoken to her students the day before (while Addy was at Children’s Hospital) and given them a heads-up that Addy will look different, and she told them to all be polite. I’ll share Keith’s perspective of his morning drop-off in my next post; in the meantime, I can tell you that it worked.
4) Talk to Addy: The thing about talking to a child is that they have the attention span of a ferret, so we had lots of small conversations leading up to her laser surgery, rather than one Big One. We brought it up multiple times in various settings, making sure to be positive and graceful each time.
Again, this is her 30-somethingth treatment, so she knows what happens at Children’s Hospital – it’s kindergarten we were preparing her for.
“Addy, do you remember what happens at your laser surgery?”
“I get popsicles!”
“Yesss… what else?”
“I … get an IV.”
“Mm-hmm… Okay, do you remember what happens to your face?”
“I have a port wine stain.”
“Yep, you do. But… what happens to it at your laser surgery?”
“Addy, your port wine stain will turn from pink to…”
“PURPLE!” [her favorite color after pink]
“Exactly. But, the other kids in your class, they’re used to seeing your port wine stain be pink… Do you think they’ll be surprised when they see it be purple?”
“Haha! Yeah, they’ll probably be like ‘Wow! It’s purple! How did that happen?’” [she laughs]
“Right! And what will you say?”
“You can tell them it’s from your laser surgery.” [repeating that line with her a few times so she can say it comfortably] “La-ser sur-ger-“
“HEY!!! MOM!!! Do you remember when we were watching ‘Finding Nemo’ and the little fish swam away from the shark like…” [and she’s off, reenacting a Pixar scene]
That’s about as much as we could do in one sitting. Later, we would bring it up again, casually, and always (ALWAYS) with genuine smiles, because we want it to be ingrained in every fiber of her being that this is not a negative or worrisome thing:
“Hey Addy! When you have your laser surgery tomorrow, what will happen to your port wine stain?”
“It’ll turn purple!”
“Right! And remember, the other kids won’t be used to it. So they might go “Woah! What’s that?!” [laughing, to keep it light]
“Dad, they know what it is. It’s my port wine stain. Remember? They asked about it before, like that one time at the playground when -“
“That’s right, silly me. But…they might ask why it’s purple.”
“Oh, yeah. I’ll tell them it’s my la-ser-sur-ger-y.”
“Good! And… are you going to tell them about the awesome popsicles you’ll get?”
“Yeah! And my princess toys and pink flavor, too!” [Children’s Hospital has some pretty cool princess toys that she loves playing with every time, and they let her pick out a flavor for her anesthesia mask. It’s a ritual, she loves it.]
“Sure, tell them all about that!”
“Dad, I have a question.”
“Okay, sweetie; what is it?”
“How do mermaids poop?”
We also tried to broach the subject of possible negative reactions. My mom (Nana) handled this one.
“Addy, when you go to school on Tuesday, what do you think the other kids will say?”
“Hmmm. They might be like “Wow, why is your port wine stain purple?”
“Right… And, sweetie, some people might be rude. They might say impolite things, just because they’re surprised. And that’s okay.”
“Yeah, sometimes people are rude. They might not know how to say ‘please’ and ‘thank you’. But other people know how to be polite and then they’re really polite in restaurants and they know how to keep their elbows off the table and – ”
“That’s right, Addy! Addy? Focus on Nana here. Yep, sometimes people are polite, sometimes they’re rude, and that’s okay.
“Okay.” [pause] “Can I drink your hot chocolate?”
And with that, we released her back into the wild.
All in all, we over-prepared her. Her classmates are kind, their parents are raising them well, her teachers handled the situation beautifully. It was almost a non-event to walk into kindergarten with a suddenly-purple face.
I’ll include more from Keith’s perspective of that morning’s drop-off in an upcoming post, but for now I just wanted to share some of our ideas, in case any of you are wondering how to ‘chat’ with your own little ferret. And I’ll post more ideas over time; for now, just know that the overarching theme in any such conversation is to be positive and relaxed. Your child will absorb your attitude. So remember that life is good; talk openly, talk like they’re lucky to be special, laugh about all the reactions they may get, and mention negative reactions with grace and empathy.
Just keep the conversations short, before they derail into Pixar reenactments or deep musings about mermaid butts. Once they start down that path, there’s no turning back…
Well, I think it’s safe to say that Kindergarten has been kicking my butt. (*My* butt. Addy’s been doing great. I’m ready for afternoon naps again.) Over a month since my last post? Yikes…
I’ve been thinking about an evening a few years ago when Keith and I went out to a restaurant for dinner. We spotted a young couple at a nearby table that intrigued us. The girl (maybe late teens or early twenties) had her hoodie pulled up so far on her head that she practically created a tunnel to her face. Her shoulders sloped down and she looked uncomfortable with herself, shrinking from view. She chatted quietly with her boyfriend across the table. This was a girl who clearly wanted to not be seen. (So, naturally, I stared, but I’m a bit of a voyeur anyway.)
After a few minutes of watching her out of the corner of my eye, I finally saw the cause of her discomfort when she turned her head to talk to the waitress: a big, bright port wine stain shaped just like Addy’s, right there on her face, splotched on her cheek (and, if I recall, up onto the forehead) like spilled paint. Ah-ha!
I met Keith’s eye to see if he had noticed it, too. He had. We silently nodded to each other (the annoying way married people do, covering a whole conversation in a single look, but for once we actually shared the *same* conversation, a rarity). Anyway. One look, and we solemnly understood that this girl in her hoodie represented everything we DID NOT want for our baby girl: embarrassment, shame, and a certain… defeated comfort in her slouched posture. She had lost, and that was okay with her. As long as she could hide that face.
Interestingly, this young woman’s hide-from-the-world posture is precisely what attracted my attention in the first place and made me want to look more. Her defeated slouch made me wonder what her story was. Meanwhile, many people have told us that they hardly notice Addy’s stain because her personality is so grandiose, so immediately engaging that they simply don’t have time to wonder about her face while she’s telling them about her favorite movie and favorite princess and inviting them to sit down and be comfortable while she talks (and talks, and talks, and talks…).
So I wonder if that young woman had been ashamed of her face her whole life (with lax parenting), or if she learned to be ashamed later by the reactions of life’s trolls and bullies. And, if it was the latter, how can the parent of an innocent, confident kid like Addy fend off that impending shame?
Certainly lots of truthful affirmations, honest compliments, and confidence-building habits all sound good for sculpting a kick-tushy confident kid, but will it be enough, when the trolls come out, to prevent that kid from shrinking into a sloucher in a hoodie?
Addy just started kindergarten.
I’m cool with that, got it totally under control. In unrelated news, I’ve been feeling anxious this week, like eat-my-weight-in-cookie-dough-blizzards nervous. (Thanks, hubby, for stashing an extra-large blizzard in the freezer. You know me well).)
Her school has uniforms.
For the record, I LOVE school uniforms, and think that K-12 education (and teachers’ sanity) would be greatly, immensely, immeasurably improved by widespread adoption of uniform uniforms.
From the moment our little girlie-girl first “oooh”-ed and “aaah”-ed herself in the mirror (the day her stay-at-home Daddy finally dressed her in a girlie dress from Nama for a doctor’s appointment), we’ve counted on allllllllll her awesome girlie dresses to bolster her identity. In other words, her wardrobe is so fabulous that it enters the room before she does. Before her port wine stain does.
And we’ve now been neutered. Because she can’t wear her myriad lovely dresses. Or her shiny, handmade headbands in her long golden hair. Or the sparkly pink shoes from Nama. Or the shiny costume jewelry from Nana.
So, she brings *just* her own self to school. Without adornment or ornaments.
Just. Her. Self.
And, go figure, she’s fine with it.
And her classmates are fine with it. (Apparently, no one has asked about her face.)
Meanwhile, I’m on my third helping of cookie dough blizzard.
And it’s only Tuesday.
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. 🙂
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. 🙂