Here’s one for combating a very real fear facing (no pun intended) parents of strangely-marked kids:
Parenting Strategy #6: Find Likeness
One of the fears we face as parents of odd-looking children is that our darling baby will grow up to feel isolated in their uniqueness. Marked with something like a big port wine stain, they’ll probably be the only such face in every room they ever enter, throughout their entire lives.
Being noticed is occasionally fun, like winning an award or hitting the red carpet, but the thought that your child will never not stand out can be overwhelming. And not a bit isolating; after all, we often find camaraderie in other humans who are (or look) ‘like’ us.
There are a few ways to help your child combat those feelings of isolation.
One way is to teach them to intentionally find likeness with humans who are similar in a hundred other ways. Their faces may be different, but they do have other things in common, if you know how to look. Maybe she braids her hair like that one girl from dance class. Maybe he likes soccer, just like the kid down the street. Or maybe her sneakers are green, like the kid in the grocery store aisle.
Any common ground you can find shared between your child and another person is excellent material for pointing out natural camaraderie, and staving off any possible isolationism. Teach your child the valuable skill of spotting likeness in other ways, perhaps small or unexpected. There’s always something, even if it’s not obvious to them; point it out often!
Another way is to widen the scope and find likeness in other different humans’ eye-catching features. Addy walks up to lovely bald folks with alopecia and talks about how it feels to look unique. She thinks that veterans with missing limbs are pretty much the coolest guys, ever. She feels solidarity with her cousin in a wheelchair, because he’s noticed, like, even more than she is! These other humans may not look like her, but she feels ‘like’ them in being unique.
But your child may still feel isolated at some point, knowing they’ll rarely, if ever, see another face like theirs.
So… when you can’t find their likeness in any other humans, you find it in non-human places instead! Examine your child’s unique feature, and start finding it in the world around you, even in unexpected places.
Our port-wine-stain radar picks up anything, anywhere, that might resemble a pink, red, or purple ‘splotch’ on a pale Nordic background. Here are a few things we’ve found:
Cupcakes: Addy’s birthday falls near Valentine’s day, and her classroom-treat cupcakes always bear some combo of pink and white frosting – but these were, by far, our favorite. Port-wine-stain-face cupcakes: half pink, half white!
Flowers: The kids picked out flowers for planting in our garden one spring, and the girls picked out petunias. Eloise told Addy she should get the “port-wine-stained petunia” (like this one), and so Addy gleefully planted the special flowers that ‘looked like’ her face:
Stuffed animals: Addy’s favorite stuffed cat happens to have a big pink mark, just like her face:
Sequins: Eloise flipped exactly half of her magic-sequin sweatshirt so that one half of the dog’s face is a different color than the other half, and proudly showed big-sister Addy the “face like yours!”
Addy feels a lot of camaraderie in this world. Sometimes she shares common features, clothes, or interests with other humans, even if she doesn’t quite look like them. Sometimes she just shares ‘different’ with other humans, even if they have hardly anything else in common.
And she may never see a doll with a face like hers, or a Barbie with a face like hers, or a print model with a face like hers, but that’s okay; she’s seen cupcakes and sweatshirts and flowers and a hundred other wonderful things ‘just like’ her, and that feels good, too.
You may have to open your eyes just a little wider than normal to see your abnormal child’s ‘likeness’ in the world around you – but pretty soon, you’ll start seeing it everywhere. Point it out, often, because your child may not pick up on such similarities on their own, and you don’t want them growing up without this skill to spot camaraderie in unexpected places. Point out any shared trait, any similar uniqueness, and any inanimate object even remotely resembling your child’s odd feature – point it out, and say, “Look at that! Just like you!”
This world can feel isolating sometimes, even for those of us who don’t stand out in a crowd. The more your child learns to spot the similarities, the less likely they’ll be to feel alone for too long. Because at some point a flower will bloom, or a cat will walk by, or a leaf will fall with markings ‘just like’ theirs, and they’ll be reminded to keep their eyes open for likeness in unexpected places. There’s always something in common – even if not, exactly, their face.
Parenting Strategy #5: Teach her to Enhance, not Hide
I remember an informal debate arising among my college friends about why we women wear makeup. An answer was, of course, was never conclusively reached, but I found the arguments intriguing. They mostly seemed to agree with the premise that makeup was a shallow but necessary evil, the sad product of our modern culture’s social pressures. (One or two might have gaily dissented, asserting that wearing makeup is just plain fun.) But most of the debate revolved around why we liberated women all get sucked into wearing it anyway.
Some friends said they felt pressure to cover up their natural face, because that’s just what we all do, and they’d look ‘weird’ in public without it. Others said that men were expecting it, making it hard to navigate the single scene otherwise, and they’d never wear makeup if only women were around. Yet others said we really only wear it to cattily impress other women, never men, and there would definitely still be pressure to cover up our natural faces on a women-only desert island.
I disagreed with the premise underneath these arguments. I didn’t think of makeup as a shallow, necessary evil. And while I certainly couldn’t speak for all women, I didn’t think society pressure in whatever guise need be the primary driver behind it.
Makeup doesn’t need to hide or change us (as the debate seemed to assume); rather, it can enhance and frame the beauty that’s already there. I wasn’t wearing makeup because I felt ugly; I was wearing it because I felt beautiful.
After all, you don’t frame a work of art because it’s ugly, you frame it because it’s beautiful – so beautiful that it’s worth a gorgeous setting. Like a diamond elevated in its precious-metal ring. Can a Van Gogh stand on its own? Sure, but why not surround it with an amazing frame? A great frame doesn’t obscure the artwork; rather, it announces, “Ta-daah! Isn’t this gorgeous?”
And that, I asserted, is what makeup does. The rouge added to our cheeks isn’t unnatural; it’s an enhancement of the color already there. A line on our eyelid follows the eyelash line that’s already there. A dash of contour enhances the shadow implied by our natural bone structure.
When done well, makeup (and clothing, and jewelry, and any other enhancement you may feel guilty for using) draws attention to the beauty that’s already there.
Part of makeup’s usefulness comes, counterintuitively, from making a face look more naturally like itself. It diminishes eye-catching distractions like acne or dark circles, deviations that show up when I get less sleep and health than my skin needs, so there’s no guilt covering them up. It’s okay to eliminate those distractions and let my natural face shine through.
Right. Easy. Made total sense.
I enjoyed a guiltless makeup routine for years.
Until… Addy came along.
Suddenly, with Addy, the debate exploded into my mind all over again; because now, this little human was watching me, and she had a face with a Thing on it – a face that I wanted her to proudly show the world in full unmodified beauty someday. Why on earth was I applying makeup in front of her? What pressure was I feeling? What message was I sending?
With three children ages three and younger, the dark circles under my eyes had taken on a touring-with-the-Stones intensity, and I covered them up daily. But… why? (Other than the legit concern that I might be questioned about escaping from a rehab facility if I didn’t.) Just because I have an imperfection, do I need to cover it up? Who am I trying to impress? How dare I use concealer in front of my marked daughter? Am I setting her up to shamefully conceal her own lovely imperfection someday?
I was tempted to tell her to never ever use makeup. I was tempted to tell her that she’s so perfect, she won’t ever need it. I was tempted to tell her that it’s only society’s pressure that makes us want to wear the stuff anyway, and she’s above that.
Because I was terrified that she’d be tempted to use it someday, to cover her own face up, and that fear stopped me in my tracks.
In time, and after many guilt-ridden concealer purchases, I came back home to my original conclusion. I am the artwork; my makeup is the frame that enhances my beauty. Do I need it to ‘be pretty’? Not at all. But am I worthy of a lovely frame? Absolutely. When sleeplessness steals the color from my eyes, I can defend my face by enhancing what’s there – showing again the beauty that’s really naturally mine.
I wanted to help Addy understand makeup’s proper role (and avoid the pop-culture discomfort many of us feel around it). I wanted her to understand that she, too, could use makeup to enhance the beauty that’s already naturally on her face, if she wanted to. And, of course, I wanted her to see the port wine stain as part of that beauty – worth framing, rather than obscuring.
So I started talking through my makeup routine in positive terms when she was around. When I applied blush: “I LOVE having pink cheeks.” Or eyeliner: “It’s fun to make my eyes a little more visible.” Or eyeshadow: “I like the color of my eyes, so I pick an eyeshadow that helps bring out the color.” Or the emotionally-loaded concealer: “I like the color of my skin, so I’m using this to make it more consistent.” When wiping off an excess of any of it: “Whoops, that was too much. I almost covered myself up! I don’t want to do that.”
She now seems to view makeup as a good thing, not as a cover-everything escape. She sometimes adds blush to her other cheek before an event, so that it matches her port wine stain cheek. She plays with eyeshadows, dusting her lids and feeling glamorous. And sometimes she just slathers ALL the colors onto her face at once, because, hey, why not? Face color is fun.
Of course, the teenage years are around the corner, and I can’t promise that she won’t suddenly decide to cover it all up one day. The thought still scares me.
But I hope she will have learned by then that that’s not what makeup is for. I hope that, when she does start wearing it, she uses it to enhance, and not hide, what’s already there – including the right side of her face.
Talk your child into a healthy relationship with makeup. She will encounter it one day, whether you like it or not; by then, she should see it as a tool to enhance her beauty: nothing more, and nothing less. Provide a running commentary of comfort and confidence when she’s watching you do your makeup routine, whatever it may be. She’ll grow to see it not as a necessary evil, or a product of a deranged popular culture, but rather as something that can frame the beauty that’s already there.
It took me a long time to come to peace with the concealer in my makeup bag. I felt like a hypocrite. But covering exhausted eyes or irritated skin doesn’t mean I’m changing who I am. My natural features are still there. I’m worthy of a good frame. Our daughters are, too.
Continuing my last post’s theme of ‘Strategies for Parenting a Unique Kid’ (see #1-3 here):
I offer you another strategy we used when parenting Addy, in order to help her navigate the world with a big splotch on her face.
As you can tell, opening her eyes to all the beauty around her was a big theme for us…
Parenting Strategy #4: Go Beyond Features
Think of someone who’s drop-dead gorgeous. What do you see in them?
It might be certain features: sharp cheekbones, full lips, great hair, whatever.
But I’m willing to bet that something other than features caught your eye first. Poise. Posture. Carriage. Confidence. The stuff you don’t hear as much about in beauty magazines. That, I think, is what makes a human stand out to us visually.
The ‘beautiful’ that we find so attractive usually isn’t just in a person’s features. It’s in the way they carry themselves, the way they present themselves. Imagine the gorgeous person you thought of above spending three sleepless nights taking care of a kid with the flu. At the end of 3 days they’re slouching, they’re disheveled, they have dark circles under their eyes, their clothes are wrinkled, their hair is matted. If they shuffled into a room in that condition, they probably wouldn’t turn admiring heads, regardless of their otherwise lovely natural features.
I’ve seen girls who are strikingly tall and slender enough to be runway models carry themselves like they don’t matter, like they just want to disappear into the wallpaper – and, unfortunately, they too often succeed, hiding their striking features under an unconfident disguise. And I’ve seen average-featured women with stellar poise and posture walk into a room and turn heads like only movie stars can – because they carry themselves like they matter.
Poise. Posture. Carriage. Confidence. These make all the difference in the way we present ourselves to the world.
This is what your unique-looking child needs to understand. Someday, she’ll be tempted to feel that she’s not beautiful, because her features are not ‘like’ the beautiful people’s (whatever they may be at that moment in time). But if she understands that much of what we see as beautiful isn’t necessarily the features, as awesome and lovely as they may be, but rather the way we present ourselves to the world, then she’ll feel empowered to act and feel beautiful anyway.
Said another way: While we may not be able to control our natural features like height or birthmarks, we don’t have to feel ‘unbeautiful’ because of them. Because beauty is what we craft from the way we carry ourselves.
So: remember how I told you to teach her to spot the beauty in all the humans around her? With all their various features and their diverse physical traits? That’s important – keep doing it. Establish a wide definition of what traits ‘beautiful’ can include.
But don’t stop there – go beyond the physical traits, and start pointing out every instance of lovely poise, posture, carriage, and confidence you see.
Here’s what it might look like:
When you and your daughter are killing time in the dentist’s waiting room, and you’re flipping through a magazine filled with skinny women, and your daughter is looking over your shoulder, and you come across a story on Serena Williams, who clearly looks different from the print models, you point out her beauty like this: “Wow, she is gorgeous. Look at the way she looks straight at the camera. So poised and confident. That is beautiful.”
But then, don’t put down the skinny models! When you flip to a picture of a glamorous fashion model, you spot beauty there, too: “I love the way this model’s hair is swept up away from her face, up to the crown of her head! It makes a visual ‘line’ that draws attention to her cheekbones really well.”
You may be tempted to naysay the whole magazine, telling your child it’s dumb, shallow, and full of unattainable ideals. But that’s not a substantial enough response. It won’t keep her from someday being fascinated by those ideals anyway, and eventually even feeling like she doesn’t measure up to them. So meet that gloss head-on, and point to the beauty that’s there, without putting anyone down.
Here’s what this accomplishes: you’re bringing beauty out of the realm of ‘features you’re born with’ (as fabulous as they may be), and placing it solidly in the realm of ‘I’ve got this’.
Point out the beauty in every instance of lovely poise, posture, carriage, and confidence you see. It might be a bold smile. Bright eyes. Fabulous hair. An elegant gait. Even artfully-applied makeup or well-chosen clothing. Any intentional choice that enhances natural beauty is fair game. Point it out. Compliment it.
Because we can control the confidence we stand with, the way we look at a camera, the way we sweep up our hair. Our natural features, which we can’t control, don’t have to ‘make or break’ our beauty.
This will empower your child. Someday, when she’s tempted to quick-fix a single feature in a panic, like cover up a birthmark or crash-diet to skinny, she’ll already know that her whole beauty does not rely on a single feature. Rather, it is a constellation of so many things all at once, much of it beyond her physical traits, and solidly within her confident control.
Empower your child to understand this; point out the beauty you see. Help her spot it in the world around her. Don’t assume she’ll pick this up on her own. Poise. Eye contact. Posture. Relaxed shoulders. Carriage. Chin up. Confidence. Smile. All of these are within grasp.
Addy’s port wine stain will never ‘make or break’ her beauty. Because no feature can. Her beauty isn’t a hapless accident of physical traits. It’s something so much bigger. She’s got this.
How do we raise a child to love her unique face? To be self-aware, without being self-critical? Prepared for, but not scared of, encounters?
Addy’s port wine stain forced us to think through parenting moments that might have otherwise passed without notice. Getting her to a point of comfort with her face (and keeping her there) took some careful attention.
Along the way, we developed some strategies for raising a unique-looking kid. Knowing that many of you, my dear readers, are also parents and grandparents, I share 3 of them with you here.
Some of these tips might seem incredibly obvious, but they don’t always flow from us naturally.
So, bear with me if I start by stating the obvious, but here, definitely at the very most-important top of the list, is “Parenting a Unique Kid” Strategy #1:
Parenting Strategy #1: Tell her she’s pretty.
It sounds so simple.
But there is so. much. cultural noise around raising females today. And, honestly, I disagree with many of the ‘enlightened’ modern directives: “Stop telling little girls they’re pretty, or they’ll never become scientists! Just tell them they’re smart and strong instead!”
Bah, humbug. As if we’re afraid that she’ll never accomplish anything if she thinks she’s pretty. As if telling her she’s a great engineer somehow conflicts with telling her she’s pretty.
Confidence is not a zero-sum game. Building up her confidence in one area of life (brains) doesn’t take away from another (looks). So we compliment both. Profusely.
The world around my daughter will tell her, whether through magazines, billboards, TV shows, movies, fashion, petty girlfriends and rude ex-boyfriends, that she’s not pretty. Whether that’s good or bad isn’t up for debate (it’s bad). But the fact remains that there will be a hundred different ways that the world tells her she’s not pretty.
It’s my job to tell her a hundred and one (at least) that she is.
Tell your daughter she’s pretty. You’re not making her shallow, and you’re not over-emphasizing looks when you do. It’s simply an insurance policy against the jabs that this world will sling at her.
And it’s the truth anyway (right?), so speak the truth. Don’t be afraid of it. Tell her she’s pretty. And that she can run the world. Those compliments don’t conflict, no matter how much our confused culture tells you they do.
We complimented Addy’s looks all the time, from her shiny little shoes to the port wine stain splotched on her face. This girl learned early & solidly that she’s pretty. Any weird encounters over her face couldn’t even begin to burst her confidence bubble. Calling her anything less than gorgeous would be like calling Mt. Everest an anthill: simply, humorously, Incorrect-with-a-capital-I.
Yes, she also knows she’s brilliant. And funny. And creative. And empowered. We built her confidence up in all those areas by affirming them verbally, all the time.
But she needed to hear she was pretty, before the world told her she wasn’t.
So don’t worry that you’ll ruin your daughter’s brains by calling her pretty. You won’t. Tell your little engineer that she’s beautiful. She needs to hear it.
Parenting Strategy #2: Tell Her You’re Pretty
Now, take it a step further: tell your daughter that YOU are pretty.
Seriously. Look into the mirror yourself and say out loud, “I feel really lovely today.”
I know, I know – the cultural noise says we’re not supposed to. “Don’t model vanity to your child! Teach her that looks don’t matter! Focus on other qualities instead, or she’ll become a petty, vain, critical woman!”
Well, at some point, she’s going to look into a mirror. Mirrors are a part of life. And our endless human striving for self-improvement means that she will find things to improve when she does look into a mirror.
The question is, will there be any other internal self-talk running in the background that keeps that self-critical drive in check?
“I feel really pretty,” is what my daughter has heard me say for years, when doing my makeup, checking my hair, pulling on a sweater, doing anything looks-related in front of a mirror.
I started talking to my reflection like that when Addy was a baby. I realized that I would need to model a healthy relationship with the mirror; after all, this was a baby whose every glance into every mirror would be a sharp reminder that her face is not like everyone else’s around her. Every glance would show her that her face has ‘something’ different on it.
And so, I decided to vocally associate Looking in the Mirror with “Self, you’re pretty.”
Addy caught on. She began to regularly smile every time she looked into a mirror. Because as far as she knew, that’s what we women do. Her reflection smiled back.
As you can probably tell from my stories here, she is not a petty, vain, critical female, even at eleven years old. She simply knows that her reflection is lovely, and that her port wine stain is part of that reflected loveliness.
Speak out loud. Your child can’t hear your internal monologue, so say it verbally for them. And if you don’t feel pretty today, then fake it ‘til you make it, and tell your reflection that you’re pretty, because your little copycat is listening.
Can I go even further?
I also say “Cool” every time I step on a scale.
Crazy! We’re supposed to never let our daughters see us step on scales, right? We shouldn’t even own a scale, right? Otherwise, we’ll all turn into self-hating weight-obsessed confused anorexics, right?
Wrong. In my opinion, weight is a simple, factual (and sometimes even helpful) number. Facts don’t have to be scary. Checking weight is a normal part of well-child pediatric checkups, pre-op appointments, and surgeries. It’s a number. Let it be so at home. Model that.
When you step on your scale to check your weight, nonchalantly say “Cool”, no matter what the number is. Because your child doesn’t need to hear a vacuum of silence around it.
You lay the groundwork for your child’s internal monologues. These are the lines that will be playing in the back of her head every time she makes a mistake, earns an achievement, puts on a new lipstick, walks into a new lunchroom, steps on a scale, and looks in a mirror. Don’t let her inherit a vacuum of silence from you, because there are other influences ready to fill the void with commentary about how she doesn’t measure up.
Instead, equip her with confident words. Show her what it looks like, teach her what it sounds like, to be comfortable with your own self. Your own reflection. Your own body.
You won’t make her vain or shallow. It’s cool. You’re beautiful. She’s beautiful. Speak it like it’s true.
Because it is.
Parenting Strategy #3: Tell Her Others are Pretty
Are you ready? Tell her others are pretty, too.
That’s right. I provide commentary on other humans’ beauty, too.
I can already hear the chorus of enlightened shouts: “You should never comment on any other woman’s physical qualities! You’re teaching your daughter to be critical and competitive! We’re above that!”
Again: beauty is not a zero-sum game. Confidence in my own beauty doesn’t diminish my recognition of yours. Likewise, recognizing your beauty doesn’t diminish confidence in my own. It’s not an ‘either-or’ proposition, it’s a ‘both-and’.
To put it in art terms, you can admire both the clear lines of a Renaissance masterpiece and the fuzzy impressions of a Monet without diminishing either work’s value to the canon.
In human terms, you can admire the delicate lightness of an Audrey Hepburn, the glamorous strength of a Serena Williams, the stunning height of a runway model, and the voluptuous curves of an Adele – all without diminishing your perception of the others’ (or your own) beauty. Appreciating one trait doesn’t have to reduce your appreciation of a different, or opposite, trait.
But here’s the catch, parents: Appreciation doesn’t always come naturally. Visual appreciation of great art doesn’t come naturally, or children would stare at a Titian instead of a tablet for hours on end. And visual appreciation of other humans definitely doesn’t come naturally, or world affairs would look quite different. It is up to us parents to endow our children with a deep appreciation of that which is truly beautiful in the world, including other humans.
Too often, we’re told never to comment on anyone else’s looks, because that should be left to our shallow, self-obsessed, critical, vain, popular culture, and we should be above that.
But if that’s the only commentary your child hears (and until a nuclear apocalypse wipes out said pop culture, your child will hear it), then you’ve left a vacuum of silence where there should be positive appreciation.
So compliment the beauty in others. Freely tell your daughter what you find beautiful. I’ve complimented many different birthmarks, skin tones, heights, ages, and weights to Addy. Thus, she has learned that there is beauty in those various birthmarks, skin tones, heights, ages, and weights (including, naturally, hers, wherever she may be in life).
Your commentary allows your daughter to begin spotting beauty in other humans to a greater degree of diversity than she might otherwise pick up on her own. You just have to help her spot it in the first place. This is critical. Don’t let her get silence from you on this.
Because later, she will be tempted to feel down on herself for not ‘looking like’ the Beautiful People… a feeling that usually rests on a pretty narrow view of beauty. The more variety she sees as beautiful now, the harder it will be to peg down exactly what requirement she’s not meeting later.
Point out the beauty in all the other humans; compliment a full spectrum of diverse features, so she learns to appreciate them all. Then she’ll learn to appreciate hers, too.
Last week, I shared a few embarrassing moments that have taught me respond with grace when people comment on my daughter’s face, even when they seem ‘ignorant’ at first glance.
“Is that a hemangioma?”
“What happened to her face?”
“What do they call that?”
I’ve learned over the years that the very people who are asking often know more than I do, or they wouldn’t be interacting at all. Because of this, I welcome their questions.
But if they don’t? And they still remark on the stain?
“Oh, that’ll go away!”
“Wow, didja slap her?”
“Get some sunscreen on that baby, she’s burning!”
Yes, that will happen. And it’s totally okay.
You’ll want to feel indignant, you’ll want to reply with sass, you’ll want correct their manners… but: it is so, so much better to extend grace. Because it will keep you sane, and, really, the world needs a little less sass and a lot more grace.
But grace isn’t always easy.
So, to help, let me offer what we’ve found to be the typical sources of all those questions and comments. Because in our experience (over a decade now), we’ve noticed that there are a few consistent reasons why people comment or ask about our child’s face.
This list I’m giving you may not be comprehensive, but these are the most common reasons that will pop up again and again, driving people to remark or inquire. Remembering these will save your sanity when you get a comment or question from a stranger:
They comment because: They’re human.
I know, it’s a broad category to start with, but hear me out.
You know what a totally natural part of being human is? Awkwardness. We’re awkward. We’re imperfect; we make mistakes, all day, every day. No true conversation is scripted or rehearsed; it’s impromptu. It’s messy, it’s full of awkward missteps and blurtings-out that make you want to put your head in your hands and hide. But it’s Life Among Humans, and it’s all we have to work with if we want genuine interaction.
The inquiries, comments, and tips you’re getting may be awkward, but they’re spoken, open and honest. If awkwardness is the price of genuine human interaction, I’ll take it.
They comment because: They’re concerned.
Probably half of the inquiries, comments, and tips we’ve gotten, especially from young children, have been due to genuine concern that she was in pain.
When they bring it up, what they mean is: “Was she burned??” “Does it hurt??” “Is that a sunburn??” This is a blessing, and reminds us that the world hasn’t yet gone to hell in a handbasket. Thank them and the Good Lord for their unnecessary concern over your offspring.
They comment because: They’re curious.
This is not a bad thing! As humans, we’re wired to look at the world around us, take it in, assess it, and survive together. We want to know each other’s stories; we want to know what happened and why. We want to know each other. This is a good thing!
When we see a Different Human, we’re naturally curious: Why is he in a wheelchair? What is his Story? Why is she missing an arm? What is her Story?
Curiosity is good. It’s a cousin to Concern, above. Let them build empathy.
How did you become like that? Was it hard? Did it hurt? Did you fight the dragon and win? What’s your Story?
They comment because: They’re a cognitively or behaviorally challenged adult who looks normal on the outside but is in fact operating at a child’s maturity level.
Autism, closed head injuries, and other disorders look normal, but come out as socially ‘awkward’. These people may be totally blunt, and may even seem rude. If an otherwise normal-looking guy is mopping the floor and makes a weird comment on your child’s face, he may have had a motorcycle accident 20 years ago, and that’s why he’s mopping floors. Give him grace.
If you pay attention to exactly who is saying the seemingly ‘rude’ things regarding your child’s face, you’ll notice that a higher proportion of them seem more socially awkward than their outer appearance might otherwise command. They may have a cognitive or behavioral issue, and deserve your politeness as much as anyone with more developed social graces.
They comment because: They’re mean-spirited and enjoy making you feel bad.
We’ve had…one…maybe two, I think, in Addy’s first decade of life. With rates like that, they’re easy to shrug off.
As your child grows, you can teach her both pity and concern for the poor souls who have such a miserable life that they treat others miserably. Teach her how to keep them at arm’s length, but kindly. Pray for them together, and I don’t mean in a patronizing way – truly plant seeds of concern in her heart for their misery, and she’ll learn to let their miserable comments roll off her back with wisdom beyond her years. The mean child might be the girl who hears she’s ugly from her own parents; it might be the boy who’s been bullied as long as he can remember; it might be the spoiled brat whose lazy parents ensure his imminent failure in adulthood. In any case, they deserve our grace, not our fire.
They comment because: They know someone who “had one just like it!” Listen for these carefully; as you can tell with my own humble experiences, they don’t always start out sounding wise & experienced; they usually start out quiet & awkward (because, you know, humans). These encounters are as valuable as gold – learn all you can from them, for these folks know what it’s like to be in your shoes.
In my experience, just about every comment & inquiry you’ll receive will fall into one of these 6 categories, with most being good-hearted & awkward attempts at conversation.
It might be the old lady at the checkout line making Awkward Human Conversation by commenting, “Boy, you need to use more sunscreen on that baby’s face!” because she doesn’t know what else to say, and in the seven years since her husband’s death, she hasn’t gotten out much and is starved for Human interaction and is lobbing what she can over the conversation ‘net’.
It might be the normal-looking guy mopping floors who ‘rudely’ asks, “Woah, didja slap her?” because, in his childlike mind, it’s a funny thing to joke.
It might be the mom just a bit older than you, giving your child those sidelong, judgy-looking glances that you hate so much, who’s really just glancing over discreetly to see if it’s the same thing her own daughter has, wishing she could strike up a conversation about it if she weren’t so introverted.
Grace, grace, and more grace. We taught Addy early on to take every interaction openly and with a smile; “Yes, that’s my port wine stain! I just had a laser surgery.” It’s not a secret, it’s not shameful; it is a fact, and we’re okay with it.
When an adult tells me, “Oh, my son had a hemangioma like that, and it went away,” my exhaustion could easily respond with: “For the millionth time, this is NOT a HEMANGIOMA and it WILL NOT go away on its own!” But instead I reply: “Oh, that’s awesome! This will go away, too, but only with laser surgeries.” There: I’ve affirmed their kind attempt at conversation (probably meant to encourage me), and I’ve responded with warmth and truth.
So. When I’m out in public with my kiddo, when she gets some stares, when I hear the old: “Wow, what a sunburn!”, my indignant Mommyhood could easily respond with: “So help me, for the LAST time, this is NOT A SUNBURN, it’s a birthmark, and it WILL NOT HEAL, and not only will it not heal, but she’s had FORTY-THREE – did you hear that, FORTY-THREE! – laser surgeries to try to zap it off AND IT’S STILL THERE. NO! IT IS NOT A SUNBURN!”
But I’ve trained myself to observe who is making the sunburn comment. It’s an awkward cashier — the old lady starved for conversation. It’s an awkward guy mopping the gas station floor, too awkward to be cognitively healthy. It’s a bank teller who has to make conversation because her computer is processing too slowly, and it’s a fine opening attempt.
So instead, I smile and with a quick laugh say, “Actually, it’s a port wine stain, but it totally looks like a sunburn! We get that a lot.” And then either the conversation is done (transaction over), or they want to know more (inquisitive Humans), and I oblige.
After all, they’re taking time out of their day to learn about my offspring, and what mother doesn’t want to talk about her perfect & precocious offspring?
I’m grateful that they lobbed an attempt over the conversation net. I’m grateful that they’re open enough to the world around them to look at other humans. And more than anything, I’m grateful for their ever-human curiosity and concern over a child they didn’t have to notice. To me, all of their comments and questions are beautiful things.
When you encounter other humans and they comment on your child’s face, there’s an overwhelming array of responses, not all of them nice, running through your head.
I have been there.
I have heard the misinformed, “Oh, that’ll go away!”
I have heard variations on the ever-humorous, “Wow, didja slap her?”
I have heard meddling old ladies tell me, “Get some sunscreen on that baby, she’s burning!”
I have felt defensive. I have felt like screaming. I have felt like rolling my eyes and snarking.
I don’t. In spite of overwhelming temptation (and a culture that tells us to be offended by every word and look), I don’t. I give them room to be human. Because I’ve been deeply humbled in a few encounters with other humans myself.
Allow me to share 3 of those encounters with you here; three times when I’ve embarrassed myself with my own indignance and pride.
I’ll continue the theme of how we ‘encounter others’ in my next post, but for now, just let me share my embarrassment with you today.
Parents, I hope these encounters help ease your mind and empower you with grace when encountering humans in the world, even when you’re not feeling very gracious.
1. I’ve written about this one before, but it bears revisiting.
One day, I was standing in line for ice cream at a crowded, noisy, charming small-town candy shop. Little Addy (probably almost 2 at the time) was in my arms, looking backward over my shoulder. Suddenly, a guy behind me boomed out with a loud voice (BOOMED! AUDIBLY!): “HEY! SHE HAS A BIRTHMARK!” My back stiffened, my arms tightened, my jaw locked; I checked Addy to see if she’d heard, and began turning around slowly (expecting, I suppose, to death-glare the nitwit into submission, because acting on any other maternal instinct would have gotten me arrested).
Before I could turn all the way around to glare down this ignoramus, he continued, “JUST LIKE ME!” And, voila, there before me stood a tall, handsome, confident young man, maybe 30 or so, with a HUGE port wine stain on his face that was indeed just like Addy’s, only even bigger and even darker. It wrapped up onto his scalp, which was proudly clean-shaven.
He wasn’t ignorant. He was confident – and I saw in one glance that it must have been a hard-won confidence. He had earned it. He definitely knew more than I did. His enthusiasm was contagious, and it was exactly what I needed.
This marked stranger was generous and happy to welcome us into his club. I was ready to crawl into a hole, but we struck up a conversation about laser treatments instead, and he warmly answered my many questions about his experiences growing up with his stain.
I have never forgotten that feeling of welcome, of relief in finding the camaraderie I hadn’t even realized I’d been seeking.
And I’ve also never forgotten how close I came to shutting out such a rich experience, simply because I ignorantly assumed that anyone speaking a single word about my daughter’s birthmark must know less than I do.
2. Addy underwent her first laser surgery when she was 5 weeks old, and then for the next two years she had a surgery each month. So we spent a lot of time at Children’s hospital, hanging out in the pre-surgery waiting room with other families about to be admitted for various minor outpatient surgeries. Dr. Z. scheduled his laser surgeries for the same day each month, and the play area was often dotted with other port-wine-stained kids and their apprehensive parents.
One morning in that waiting room, around her 9th surgery, I struck up a conversation with a mom whose healthy-looking 12-year-old daughter was sitting beside her. Addy was crawling all over my lap, and her unique face came up naturally in conversation. I began telling the mom what Addy was here for, and how Addy’s had a number of surgeries already, and how her face gets bruised every time. (At this point, we had more experience than many other laser-surgery parents there, so I was used to answering questions.)
This mom replied that her daughter was also here for a laser surgery with Dr. Z. I pointed to the play area and inquired which little one was hers, since the older kid next to her was clearly fine. “Oh, no, it’s this one,” she said with a laugh, putting her hand on her twelve-year-old. “She’s got a port wine stain all over her back, and also all the way down both legs, and it’s really thick, and she’s had a ton of laser surgeries already. We lost track ages ago. She’s on swim team, since contact sports aren’t great for her, and she used to get embarrassed about wearing a swim suit, but she’s just had to make peace with it now that she’s on the team. We try to laser it whenever we can…”
I was amazed. This healthy girl was hiding a stain like Addy’s? And an even bigger one? And I can’t see it? And an even thicker one? And she’s had more surgeries? And she’s struggling with uncovering it for swim team?
The whole time I’d been talking to this mom, I’d been assuming that she probably didn’t know much about port wine stains, and that I was ‘informing’ her, while in fact she knew much more than I did. Again, I wanted to crawl into a hole, but she was gracious and warm.
3. When Addy was just a month old and her port wine stain was still very dark, Keith & I brought her over to a friend’s home to meet his whole family, including his parents and his younger siblings (whom we ourselves didn’t yet know very well).
In that first month of Addy’s life, I had already received a lot of warm but maddeningly erroneous encouragement from ignorant people telling me, “Oh, don’t you worry, that birthmark will go away.” Even the nurses at Addy’s birth had said it. I had wanted to scream at every single wrong one of them: “No it won’t! Not without laser treatments! A LOT of laser treatments!” They’d meant well, but they’d been confusing port wine stains with hemangiomas, and by the time that first month had passed, I’d had it *up to here* with bad advice, and was ready to snap if, so help me, I had to hear to that glib dismissal one more time.
We arrived at our friend’s house, and two younger sisters enthusiastically began giving me & Addy a tour of the house, talking over each other as we went. “Ooo, what’s that thing on her face?” “Is that a birthmark?” “That’s so cool! Our little brother has one—“ “Yeah, but it’s like almost gone now—“ “Yeah, it’s like SO MUCH lighter than it was when he was born—“ “Because it was SO DARK when he was born—“ “But it went away!” “Yeah! Hers’ll go away, too!”
There it was. I wanted to snap. If they hadn’t been so charmingly exuberant, I would’ve just about lost it. But I kept my cool because I love this clan. I tried to diplomatically cut in with, “Well, you know, this isn’t a hemangioma, it’s a port wine stain and –“ “Yeah! Yeah! That’s what he had!” And they were off again, chattering on the tour, completely oblivious to their own ignorance.
Later, we all gathered back in the kitchen to chat and to “ooh” and “aah” over Baby Addy, who was now asleep in her car seat. Our friend’s mom gently pulled me aside and asked me with a sidelong glance at my baby, “So… Have they told you about Sturge-Weber syndrome?”
I looked at her, dumbfounded that she would know about Sturge-Weber, a series of difficult complications unique to port wine stains. She called over her youngest son, brushed his hair off his forehead and said, “This is where his port wine stain was; you can still see spots of it.”
The other siblings started excitedly talking over each other again: “Yeah, it was really dark!” “And he had LOTS of surgeries!” “And he had other problems from it, too!” “Oh yeah, he definitely had other problems, too!”
Ahhhhhh… okay… So, when the sisters had said it had gotten lighter… they’d actually meant that it was lighter *after* a lot of laser surgeries… And they were trying to encourage me, to tell that me that it could get lighter with those surgeries… And they were living with Sturge Weber Syndrome on top of it.
They’d known exactly what a port wine stain was. They were walking that same path, many steps ahead of me. With many, many more bumps along that path. And I had tuned them out, not even hearing their wisdom between the lines.
In each of the three moments above, I had assumed, without even trying, that the people around me were somehow more ‘ignorant’ than I; that they somehow needed to be ‘educated’ on My Baby.
The truth, in each instance, was that their bumbling hid not ignorance, but wisdom – which I could heed or ignore at my peril.
There’s a 4th story here – but in this one, the tables were turned. It has nothing to do with birthmarks, but it definitely made me chuckle.
Back when I worked in banking, I got into the elevator at the end of a workday. I worked on the 26th floor of a building filled largely with bankers and lawyers, and every stop on the end-of-day descent added another suit.
The doors opened to a law firm floor, where a family was waiting to get on – a lawyer, his wife, and their young son. It appeared that Mom and toddler had visited Dad’s office at the end of the day to pick him up, and now they were all leaving together.
This mom looked tired and frazzled, and she spoke just a bit sharply at her toddler when he ran into our crowded elevator. I smiled at the boy; he was cute, and he wasn’t doing anything naughty (other than being a toddler, and he could hardly help that).
As she navigated his empty stroller into the elevator with deep sighs, she looked at my obviously pregnant belly and my indulgent smile, and said to me with pursed lips, “Ahh, well, this will be you soon.”
Ohhhh, sweetheart. I laughed out loud with my hand on my belly: “This is number three,” I clarified for everyone.
The suits around us chuckled. She turned beet red.
She had probably assumed by my suit, age and departure time that I must be expecting my first child. Not an unreasonable assumption. And she had therefore assumed that she knew more than I did about toddlers; this clearly left her indignant that I, an ignorant stranger, would dare to silently comment on her mothering with my naiively indulgent smile.
In fact, I’d been in her shoes (twice already), and I’d had those days (twice as many). I’d had many, many of those days. Only with, ahem, TWO toddlers at once and a very pregnant self, thank you very much.
So even when you think that someone’s behaving ‘ignorantly’ and you’re annoyed, take a deep breath and give them room to be human. Not only will you keep yourself from saying something that hurts them, but you’ll keep yourself from saying something that embarrasses you.
Because if they’re interacting with you at all, there’s probably a reason why. They probably see some common ground. And there’s a good chance that they might actually know more than you do. Assume the best, give them grace, and listen for their wisdom between the lines.
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.
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.
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.)
Here is Millie’s first note to me last year:
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,
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.
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…
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…
(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!
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.