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You’ll Be Okay

 

 

Congratulations!  You have welcomed a new baby into this world.  You are excited, happy, terrified, uncertain.

And that baby looks nothing like what you expected.

If you, too, have been surprised by your perfect newborn’s unexpected face, I can perhaps offer some insight into the things you’re worrying and wondering about.

You already knew that you’d have to navigate the challenges of raising a child in this complicated modern world, but you weren’t prepared to do it with a strange-looking face.

You may be torn between calling your perfect little infant “perfect” and wondering what to do about this looming flaw.  Should you call it a flaw?  Will she think she’s not perfect?  Should you mention it to her at all?

You will Google this condition, and when you see all the ways these errant blood vessels can invade the brain, the eyes, the nose, and the gums, you will start watching for every daily milestone to make sure all systems are working the way they should.  At least, for now; those vessels will keep growing.

You will feel guilt at your concern over your baby’s face while other parents are dealing with issues so much more deep, painful, and immediate than this ‘cosmetic’ issue; yet, when someone else tells you to be thankful that you have “only a cosmetic issue” to deal with (and maybe even that “it’ll go away”), you’ll want to cry.

You will worry over every contact sport, every scratch, and every nosebleed, along with her eyes, gums, tongue, teeth, brain, and anything else these overgrown blood vessels touch.

And then, you will wonder what you’ll eventually say to her.  How will you talk to her about it?  And it will feel a lot like vanity, worrying about her looks, and surely, you’ve never been this vain before…

When it comes to her looks, you will struggle in the balance between truths – the truths that other people tell you, and the truths you discover for yourself.

People will tell you your baby is beautiful, and that’s true.  They will tell you that your child will be absolutely fine sporting a birthmark in our enlightened modern era, and that’s true.  They will tell you that beauty is so much deeper than skin, and that’s true.  They will even tell you that people hardly notice it after they meet your child, and that’s true, too.

But it’s also true that the uniqueness of each birthmark means that your child may never see another human being like them, and that’s isolating.  It’s also true that your decision to treat, eliminate, remove, or otherwise ‘fix’ this error will haunt your parenting conscience whether you choose to leave it or not, and that’s sobering.   It’s also true that our human instinct to spot aberrations in nature means that your child’s errant face will never not be spotted, and that’s overwhelming.

It’s a worrisome thing to raise a child with a strange face.  It’s okay that you’re dealing with those worries; it doesn’t make you a shallow person.  And you may not feel validated when people encourage you with all the truths about how cool it is to have a birthmark now; they’re not wrong; it just doesn’t feel validating.  That’s okay, too.  Take their encouragement; consume the truth they’re giving you.

You will think ahead to the first day of preschool, and the first day of kindergarten, and all the other firsts that she will walk into.  How will she carry herself into the room?  What will she say?

You will find yourself noticing all the unique features in other humans now.  And every time you see another human with a Thing on their Face, you’ll devour every hint that might give you clues to your own daughter’s future, all the way down to the way that one birthmarked guy orders his ice cream, and the way that one birthmarked girl slouches into her hoodie.   Ashamed?  Is that what your perfect, brilliant, precocious infant daughter will become?

People can assuage you all they want, but let me tell you, when you think ahead to all the things you have to prepare a daughter for these days, and then plan on having a weird face on top of it, it’s overwhelming.

You may not know what to do with all the overwhelmingness.  You may be quick to feel indignance: How dare Disney not have a princess that looks like my daughter?  You may be quick to feel offense: How dare that ignorant idiot ask my daughter what’s on her face?

Take a deep breath; be patient with all the other flawed humans around you.  They may not validate your concerns; they may not accommodate your daughter’s face, or even anticipate it.  They may ask loud questions.  That’s okay.

Have grace for other humans; give them room to err, because they’re imperfect, too.

Have a sense of humor; dress your baby up as a Dalmatian puppy on Halloween and call her ‘Spot’, because you only live once.

We’re reluctant to embrace vanity, but when we’re honest, we would admit that we desperately want to conform, we want to look “like”, and we want to be seen as pretty.  This is our vanity, and we feel guilty for it, and a facial mark rocks that guilt.  It may feel better to preemptively blame other humans for not accommodating your daughter in their princess lineup, but I think it’s healthier to admit that a natural dose of vanity comes with being human.  It doesn’t make you a bad person.

It’s okay to worry about all of this, and then it’s okay to let it all go and take “Spot” trick-or-treating.

Parenting is always uncharted territory.  Every child is unique, and every day is new.  I can give you advice, I can tell you what we’ve learned; but, ultimately, you will make your own path.  I’ve walked some of your steps, but not all of them.

And as I learn from each of our steps, I will continue sharing what we’ve learned with you, here.  But in the meantime, please know that I’ve felt what you’re feeling, and I can tell you, after more than a decade of parenting a Kid with a Thing on her Face, that it’s all okay.

Addy may not remember being dressed up as a Dalmatian puppy named ‘Spot’, but she thinks the pictures are hilarious.  She’s fine.  It’s all good.

You’ll be fine, too.

Going in for a Laser Treatment

So, you’re going to bring your child in to get zapped! Congratulations. I always applaud treatment, because I know that some parents have struggled to get sufficient medical advice to understand that, no, this birthmark isn’t going away on its own, and will in fact only grow with the child. So treatment is an excellent step forward.

Let me walk you through a few points related to treatments, based on our own experiences. (Again, I’m a lay person, not a doctor, and this is anecdotal advice, but hey – that’s what the internet is for, right?)

1. Get it done under anesthesia.
There are doctors who treat port wine stains without general anesthesia. I think they’re crazy. Here’s why.

A few years ago, my son developed a little red-dot hematoma on his cheek. It, too, needed a laser treatment. Since it was so small, Dr. Z. (Addy’s dermatologist) told us to just come into his clinic, where he would do a quick zapping with a bit of topical anesthetic. That’s the normal practice for the fancy clients who want their unwanted capillaries zapped. It gave me a chance to see what’s usually done behind closed operating-room doors. So we went in, put on special sunglasses, and helped hold Clarence while the laser zapped him.

It was noisy! And powerful! Like lightning suddenly exploding: BZZZZ! BZZZZ! BZZZZ! Pause. Then again: BZZZZ! BZZZZ! BZZZZ! The impact to the skin is often described to us by adults as “being snapped by a rubber band over and over, a hundred times a second.” BZZZZ! I could see the impact on the skin.

We had to wait through a moment of silence, then: BZZZZ! Another moment of silence, then BZZZZ!

Clarence was a trooper, but he did cry a bit.

That was zapping just a tiny spot on his cheek. When we were all done, Dr. Z. looked at me and said, “Now you can see why we do port wine stains under anesthesia.” Yes, sir, INDEED, I can. The sheer acreage of a port wine stain demands it. These are not little varicose veins or spotty hematomas – they’re big and spacious, and need *gridwork*, not *spotwork*.

Why am I telling you this? So that you can feel confident in your provider’s choice to put your child under anesthesia. Some parents (and even some professionals, and definitely the coverage providers) feel uncomfortable putting children under anesthesia. They may quote a report that came out a few years ago vaguely linking multiple trips under anesthesia in a child’s first two years with later behavioral issues like ADD. But what usually isn’t addressed in those conversations is the fact that children who require multiple surgeries in their first two years of life might have complicated medical issues, and that it’s just as likely that the later behavioral issues are caused by the underlying medical condition, the effects of it, or simply growing up in a hospital, and not by any long-term effect of anesthesia. Port wine stain cases are unusual in that, in spite of the need for multiple surgeries, there usually isn’t a major underlying medical condition affecting development (except for Sturge-Weber Syndrome), so we really don’t have much to worry about.

Addy’s had forty-three trips under anesthesia, and she is (in my humble opinion), a well-adjusted genius.

I can’t recommend anesthesia heartily enough. Anesthesia takes what could be a difficult and stressful experience (“BZZZZ!”), and turns it into a glorified nap.

2. The Day Of Treatment
Let me repeat something from the last sentence above: from your child’s perspective, all she will experience is *a glorified nap*.

Parents, please remember that when you bring your child in for a laser treatment under anesthesia. There is no great terror here. You will be STRESSED BEYOND BELIEF. That’s okay, you’re her parent, you’re *supposed* to be stressed when your offspring is taken from you and given a gas to knock her out. Totally natural.

But when she comes in for an outpatient surgery, your child will experience something like this sequence of events, all of which are pretty harmless from her perspective:

  • Arrive at hospital. (There’s a colorful mural on a wall. Pretty!)
  • Check in; the nurse dotes on you by taking your height & weight and giving you hospital pajamas to change into. (What an AWESOME COLOR.)
  • You wait for the various doctors and nurses to come and pre-check you. (Which gives you time to PLAY WITH TOYS. )
  • Various doctors and nurses come to pre-check you. (Excellent opportunity to practice your pleases & thank-yous, and say your name & birthday a lot, while they smile at you. SO MUCH ATTENTION!)
  • They wheel you back to the room. (A RIDE! AWESOME!)
  • They put a mask on your face and help you sleep. (Zzzzzzzz)
  • You wake up from your nap.
  • You eat popsicles after your nap. BEST. DAY. EVER.

That’s pretty much it, from your child’s perspective.

Here’s the key: whether this is a positive or negative experience rests in your hands, parents. No matter how stressed you are, you must help your child see everything new in a positive light. You are the sky, she is the water, and she’ll reflect your attitude. Be sunny.

Think of a first ride on a rollercoaster – it could either be terrifying or exhilarating, and a child watches their parent’s reaction to help determine whether the New Thing is terrifying or exhilarating.

Help her enjoy her day by pointing out the pretty mural on the wall. Help her get excited about the hospital pajamas, no matter how ugly they are. Tell her to thank every nurse and tech and doctor who dotes on her, even if they’re just flatly doing their job. Point out how awesome it is that she gets to play with toys, even if she has the same ones at home. Act like the mask with the crazy gases is worth smiling about. When she wakes up, help her procure popsicles and be amazed together that she’s eating popsicles at that time of day, without even eating lunch, and make it sound like the best day ever.

Okay, so that’s her perspective. Now yours:

  • You’re gonna cry. Accept that, make peace with it, stash a tissue in your pocket, and be ready. They’re knocking your baby out. The tears come, whether you want them or not.
  • Your maternal instinct will DEMAND that you tackle the people wheeling away or putting a mask on your baby. “YOU TOUCH MY BABY, YOU DIE.” It comes up suddenly. It’s unexpected. And you were feeling so civilized today. To avoid getting arrested, suppress this instinct as much as you can. Good luck.
  • Allow yourself to glance at the other families, patients, anyone else you see. Pretty much every single one is fighting a harder battle. This helps keep you grounded & sane.

Addy has enjoyed something about every surgery. She looks forward to each one. She wants to go back to see Dr. Z. and all the wonderful people at Children’s who dote on her and give her toys to play with and popsicles.

Next week, I’ll share a bit more insight on how we got her to like medical procedures, because a lot of intentional parenting went into it. But in the meantime, let me share a few other things to keep in mind that will help your whole week go better.

3. A few final medical tips

  • In the days leading up to a surgery, play around with putting things in front of your mouth and your child’s, like an anesthesia mask. Make something out of a brown paper lunch bag if you have to – the point is to get her comfortable with something safe in front of her face. (Okay, here’s the obvious but necessary caveat: don’t use plastic bags or anything unsafe. Feel free to teach her the difference here.) Make it a trumpet; try breathing into it; play doctor. Play, play, play! Then, when an anesthesia mask is really put on her face, rather than freaking out (“Get that weird thing away from my face!”), she’ll recognize the game.
  • Listen to the anesthesiologist when they tell you what they plan to do. There are many variations of the anesthesia cocktail they could give her (with or without anti-nausea, with or without steroid, with or without amnesia); take notes here so that you can, over time, determine what cocktail works best. (For Addy, it’s no steroids, no amnesia drugs, but with something for pain and sometimes a little something extra to help her sleep longer.)
  • There’s an “anesthesia hangover” that lasts about 3-5 days. Your child might be weirdly more emotional than usual. More likely to break down and cry. Emotionally fragile. That’s just the anesthesia hangover, and it will pass. Warn her teachers, warn her caregivers, and warn yourself. She’s fine, just a little emotional. Give her grace.
  • You probably won’t experience this, but there’s such a thing as “emergent delirium”; this affects mostly 3- and 4-year-olds, and occurs when a child ‘wakes up’ and appears functional, but their brain is still anesthetized. This happened to Addy at age 3; she seemed to wake up, but was still weirdly fogged. The ‘disconnect’ between awake & asleep brings on some unexpected behavior. (In our case, massive tantrums.) If you see your child completely breaking down post-anesthesia, don’t worry; she’s probably just processing the rest of the anesthesia, and IT WILL PASS SOON. Suddenly, the clouds part, and the child is normal again. The nurses can help you navigate this if it happens, but again, it’s unlikely.

These laser surgeries are nothing. No scalpel, no stitches, no chemo, no major complications. And yet they’re a big deal; you’re watching your child get knocked out for a medical issue, and your Maternal Instinct will be aroused. (DOWN, Mama Bear!) Allow yourself to maintain the perspective that this is a light burden, and that it comes with the blessed opportunity to help our children navigate the modern world with lovely marks on their faces, and to endow them with depth of character early in their young lives.

But just, like, try not to punch the nurse. Okay? Okay.

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

Not-so-Uniquely Flawed

In the seven years that I’ve been pondering unique marks and distinguishing characteristics since Addy’s birth, I’ve come to appreciate the simple yet profound truth: every human is unique.  And therefore beautiful.  And vulnerable.

Addy doesn’t hold a monopoly on being different.  She may have a more obvious imperfection than you, but you’ve also been singled out, felt embarrassed, tried to hide, and wanted desperately to blend in.

Haven’t we all?

Keith pointed out to me early in baby Addy’s life that a bully will find anything to bully – in other words, even if our daughter didn’t have a port wine stain, she could be made fun of for being short, or being tall, for being outgoing and happy, for wearing glasses, or even getting the highest score on a test in school.

We decided early to find the silver lining in baby Addy’s port wine stain: knowing that any child can (and will, at some point) be singled out & made fun of for some uniqueness, we’re intentionally grateful that our brilliant daughter has a mark on her face; we would prefer that life’s bullies fixate on something skin-deep (for which we can prepare her, as you’ve read on this blog here), rather than her intellect, joy, or exuberance (which are so deeply tied to her soul).

In other words, our journey isn’t unique.  And yet, it is.  Addy entered the world with a giant, attention-grabbing stain on her face, and even after almost 40 mark-lightening laser treatments, it still gets questions.  If a bully’s looking for something to single out, here it is.  We face the challenge of building her up to be simultaneously aware of and comfortable with her flaw, both humble and confident.  We must be honest with her, build her self-esteem, and prepare her for a world full of flawed, and sometimes cruel, humans.

But really… This is what every parent faces.  Your challenge, as much as mine, is to launch a confident, well-adjusted, healthy-self-esteemed child into the world, while protecting them from its cruelty in the meantime.   Not every child is born with an obvious splotch on their face, but every parent still shoulders the burden to guide wisely, and dances that line between shielding and exposing, protecting and empowering.

If we do our job well, Addy will know that she may be uniquely flawed, but that every other human around her is, too – and that they deserve the same grace and kindness from her that she might ever hope to receive from them.

The Dappled Things of Beauty

Continuing the last post’s theme, I share a poem with you:


Glory be to God for dappled things –
   For skies of couple-colour as a brinded cow;

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:

Praise him.

– “Pied Beauty”

Gerard Manley Hopkins


(These pictures are from the days following one of Addy’s recent surgeries, when “dappled” is an apt and lovely adjective.)

Addy dappled

Addy dappled after surgery

Decisions…

.Sleeping Addy PWS

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 nature, nothing is perfect and everything is perfect. Trees can be contorted, bent in weird ways, and they’re still beautiful.”

— Alice Walker

 

Addy sleeping

Baby Addy Port Wine Stain beauty

Addy and Daddy

Talking to Addy (part 2)

IMG_0705.JPG

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.

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.

Halloween of Yesteryear

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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…

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