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For Parents: How To Encounter Humans, Part 2 (of 2)

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:

 

Reason #1

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.

 

Reason #2

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.

 

Reason #3

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?

 

Reason #4

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.

 

Reason #5

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.

 

Reason #6

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.

 

For Parents: How to Encounter Humans, Part 1 (of 2)

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.

 

But.

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.

 

 

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.

The Stranger in Macy’s

It’s good to be back!  For the last year, I’ve been writing more for my mother than my daughter over at CaringBridge (FYI — she’s doing great!).

But Addy’s EBC speech (below) brought me back here, and I’ve been wanting to share a sweet story with you from a recent outing.

Keith and I were walking with the kids through a Macy’s department store one afternoon.  We move slowly as a herd, and passing all the shiny things in the jewelry department slowed us down even more.  With plenty of time to glance around at the other patrons, I saw a woman standing with her husband at the jewelry counter.  As she turned her head back and forth in conversation between her husband and the employee helping them, I noticed a big, dark, red splotch on the front of her face.

I stared, like any good 5-year-old would do, but tried to be at least a little bit discreet while I determined if it was a birthmark or a burn scar or something else.  With each mark being so personalized & unique, it can be hard to identify from a distance; you just know there’s something big there.

She didn’t notice me staring, thank goodness, but I quickly realized that it was because she had locked in on Addy.  She was staring at Addy.

I nudged Addy to get her attention from the shiny things for a second, turned her toward me, and whispered excitedly, “Don’t turn and stare, but I’m pretty sure there’s a lady over there with the exact same stain you have.”

Whenever we encounter someone else with a unique feature, like the darkness of a birthmark, the baldness of alopecia, the stature of dwarfism, or the gap of a missing limb, I treat it like a celebrity sighting.  It’s all in the attitude – a combo of “Ohmygoodness they have something super-unique too!  Agh!” and “Be cool, be cool.”  With that, my children have learned that people who ‘stick out’ (like celebrities, or Addy) are totally positively awesome, and that they might (like a celebrity) not want to be disturbed.  With small children, one can never teach too much discretion.

So when I told Addy there was another person just like her nearby, her eyes got big and excited and she got twitchy as she itched to turn and look but knew better.  She stage-whispered, “Where?”  “Behind you.”  Addy turned naturally as if to look at more jewelry, glanced at the woman discreetly, then played it cool, turning to me, “It’s even on the same side!”

I got the impression that the same thing was happening between the couple buying jewelry.  I thought about introducing ourselves, but hesitated; this woman was a bit older than I was, which means she had grown up before the unique-is-awesome attitude pervaded the culture as widely as it has by now.  People from Generation X and earlier don’t always have good memories of growing up with their unique feature; some came from families that never spoke of the birthmark at all.  They’ve made reluctant peace with it, but they’re sick of being noticed in public; in their experience, being noticed isn’t a good thing.

There wasn’t much time to think about it, though, because the next thing I knew, the woman was leaving her bag with her husband and walking toward us.  I turned expectantly, as if we were going to engage in the usual polite grown-up introductions, but she walked right by me and, without saying a word, engulfed my daughter in a bear hug.

Addy hugged her right back.  They stayed there for a long, long moment, and I heard this stranger speak quietly into Addy’s hair: “You are so beautiful.  You are so beautiful.  Don’t ever let anyone tell you otherwise.  You are so beautiful.”

And that’s how we met.  After detangling from Addy, the woman said to us, “I’m so excited!  I mean, I often see other birthmarks, but it’s really rare to see someone with a stain, just like mine, on the right side!”  We talked about how pretty it is, the way it ‘sweeps’ up to the hairline.  Addy told her proudly that she’s had forty-something surgeries, and the woman nodded: “I had thirty-seven.”  I just about fell over – this woman’s stain was really dark!  These two birthmarks were similar even in their resistance to treatment.  “Keep zapping!” she encouraged.  Addy told her about having a tube down her eye, and getting checked for glaucoma, and the woman nodded, “Yep! Me too.”

I’m so grateful that this woman came over.  I’m grateful for her confidence.  I’m grateful for her willingness to bear-hug a stranger’s kid.  My daughter got to meet someone like her, someone she could identify with, someone who’s walked in her shoes first.

Addy talked about it afterward like she’d been personally approached by a celebrity.

And, in a way, she had.

 

 

Conversations with Millie

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

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

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

Enjoy.

 

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

“Hi,

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

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

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

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

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

My sincere gratitude,

Millie, London”

 

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

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

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

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

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

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

 

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

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

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

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

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

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

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

Millie-young2

Pre-butterfly…

Butterfly

Wow.

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

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

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

 

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

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

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

She continues:]

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

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

 

BAFTA (2)

Project

WELL DONE.

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

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

Millie-young1

Please Ask!

For all those lucky folks out there who encounter my gregarious social butterfly Adelaide and her Port Wine Stain, I tell you: Go ahead, Ask.

Seriously, mention it.  Ask about it.  Don’t worry about ‘shush’-ing your kid when they ask Addy what’s on her face.  It’s good for her, and, honestly, my favorite topic in the WHOLE ENTIRE WORLD is my offspring, so, naturally, anything to do with them is a fabulous topic for me to talk on.

I want to talk about it.  I want to tell you about Addy.  To tell you what it was like to see her face for the first time.  To share all my rookie scientific knowledge of those blood vessels and nerves and treatment options and research.  And how awesome Children’s hospital has been to us.  And how we’ve navigated her self-esteem so far.  And what I’m afraid of in the future.

Because in my experience, all my chattering will prompt you to remember some long-forgotten relative or acquaintance with a port wine stain or something like it, and when you tell me all about your uncle, I’ll learn just a little bit more about how to raise a kid whose face carries a mutation, and how to do it better.

So please, ask.  I want to answer.

Addy Flying Port Wine Stain Baby

 

Addy Wired Port Wine Stain Baby

Addy Mommy Port Wine Stain Baby

Addy Playing Port Wine Stain Baby

Addy Daddy Port Wine Stain Baby

Addy Laughing Port Wine Stain Baby

Addy Kitty Port Wine Stain Toddler

Addy Festival Port Wine Stain Toddler

Addy Dancing Por Wine Stain Toddler

Addy Playing Port Wine Stain Toddler

Siblings

SocialAddy

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“Another port wine stain! Sshhh…”

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

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

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

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

Maybe next time.

Siblings & Classmates

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

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

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

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

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

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

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

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

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

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

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

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Talking to Others

A dear reader (whose daughter has a similar stain) asked me the following question:

“…I do struggle with how to respond when people ask questions about her face, especially after a treatment. I want to educate them, but at the same time, I don’t want to be judged. I don’t think the average person understands how extensive these port wine stains become with age and without any treatment. Do you have any advice on how you respond to these types of questions?”

Why, certainly. 🙂

First, don’t worry; there will always be people who disapprove of your decisions. They can’t do anything about it, so let them stew.

Second: my rule of thumb is to always (always!) strive to make the other person feel comfortable. Not only is it kind, but in our cynical culture it’s also unexpected, and therefore disarming to any potential jerks. (In other words, if they’re expecting me to be defensive and I’m not, they soften up immediately. Works like magic in most of life, actually.)

So, kindness is key. But how do we make others comfortable when we’re toting a small child who looks like she’s been in a barfight? And in only a quick minute or two of passing conversation?

I’ve found myself using the following lines the most – they’re simple, they sum up the problem quickly, use imagery that people understand, and are casual & humorous enough to put people at ease. Sprinkle them into the conversations as you wish:

• “Oh, she’s fine, she just had another laser treatment for her port wine stain.”
• “It’s a proliferation of blood vessels – basically, they never got the signal to stop growing in utero, so they just keep growing, and growing, and growing.”
• “The laser zaps them – they heat up, explode and die. So then we can zap the next layer – there are a TON of them.”
• “It’s like weed-whacking – those vessels are constantly growing, we’re just beating them back. The sooner, the better.”
• “Yep, as she grows, the blood vessels keep growing with her. The whole thing will get thicker and darker and even nodular over time. It’s crazy!”
• “It’s not a big deal, we just have to keep weed-whacking for a while, that’s all.”
• “We’re going in for another zapping next week.”
• “I think it’s pretty much the same thing they do for varicose veins.”

The ‘weed-whacking’ analogy clicks with people – they suddenly ‘get it’ that this is a long-term process against constant growth, and it makes them smile. (Who hasn’t battled weeds in their yard?)

‘Zapping’ also sounds casual and surprisingly noninvasive, and makes people smile. (What kid hasn’t shuffled their stockingfeet on carpet and zapped a door handle?).

Pointing out the relation to cosmetic surgery seems to make people more comfortable that this is a simple, noninvasive procedure.

When you speak with easy confidence and a smile, rolling your eyes at how these blood vessels just keep growing (and growing, and growing), waving your hand when you tell them “Oh, she’s fine,” and shrugging when you tell them she’s going in for another zapping soon, they’ll usually relax. You’re cool with it, they can be cool with it, too.

When you’re with your close friends and confidants, you can relay your anxieties, fears, and worries – after all, this is your daughter and there’s a lot to worry about. But as long as you’re in casual conversation, just make people comfortable, and you’ll find that most respond with kindness.

Keith’s Summary of Last Week’s Dropoff:

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

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

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

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

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

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

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

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

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