Welcome!
We’d love your input!
I’m the mother of a gorgeous little girl who was born in 2008 with a port wine stain the middle-right side of her face. We’ve received questions and comments on the mark since she was born, which is perfectly fine with me and my husband, but as she grows older and more self conscious I want to make sure we equip her to handle the questions herself.
So please help us out! Have you (or your kid, sibling, parent, dog, anything) been the odd one out before? What questions did you get? How did you feel? What did you say in response? Please join the discussion! And as we encounter comments and questions, I’ll share our experiences here, too.
Quite simply, I’d like to have some small idea of what attitudes or questions a girl who has an obvious mark on her face might encounter as she grows older, and to ultimately teach her to respond to it all with humor and grace.
To join the conversation, simply comment on any of the posts here, and share your thoughts. (And just for fun, please tell me what state or country you’re from.) Thank you!
Our London Meetup
Dear readers, as you know, I’ve been writing about Addy’s unique face for over a decade — the feelings of being a new parent to an odd-looking child, the laser treatments with or without anesthesia, the social interactions with humor and grace, and more.
We recently had the opportunity to travel to London (from our home in the midwestern United States) and meet some of our dear blog readers IN PERSON!
These readers are, of course, fellow Port Wine Stain families, and I am SO excited to share the experience with you here.
One family traveled down from Edinburgh, Scotland with their beautiful daughter, Maia. She’s a lovely little girl whose stain, like Addy’s, covers a good portion of the right side of her face. Her port wine stain had just been treated that morning — hence the purple bruising you can see in these pictures.
Maia was a trooper! Even with cross-country travel AND a laser treatment that morning to boot, she sailed through dinner, dessert, and drinks with ongoing sweetness.
Maia charmed all of us.
In addition to Maia and her parents, we also had the immense privilege of meeting — in person! — Millie Amelia, whose own Port Wine Stain experience became its own post here. She traversed the city of London to join us after work (no small feat during rush hour!).
My own parents also joined us, as did Addy’s two siblings (our other two children, Eloise and Clarence). We all met up at a quintessentially British pub on Tottenham Court Road.
Our time together was rich. So, so rich.
It’s taken me some time to put it into words.
First, meeting in person felt like a family reunion.
It was as if we’d already known each other for years. We could feel our shared experiences without needing to figure out how to express them — experiences that are significant to us, but not common to everybody.
Maia’s parents were in good company with me and Keith as fellow parents (and even with Addy’s grandparents, too).
We’ve wondered how on earth to parent a little girl with a big blotch on her face, and keep her mentally healthy through it. We’ve pondered every angle of laser treatments, from the long-term effects of deep anesthesia to the scarring that powerful laser beams can cause on our darling daughters’ faces (which they definitely don’t need on top of their port wine stains!). And we’ve concluded that everything’s fine; these girls are fine. But it doesn’t stop us from thinking about All The Things. It’s what parents (and grandparents) do. That common ground was evident in our rich conversation.
Millie Amelia was in good company with Addy herself, as both of them are young ladies with big personalities; they also have lived the unique experience of being the only face in the room with a big blotch on it.
Millie shared with us that she’d covered her stain up with makeup for many years, and so her bare-faced confidence out in public was a relatively recent development. She and Addy have strikingly similar port wine stains — both on the right side of the face, along the V2 nerve and touching up to the forehead. Between their immediate common-ground understanding of each others’ life experiences and their similar appearance, they looked like they could have been sisters.
The pub was warm, cozy, and just crowded enough to feel festive. The food was comforting and good; we kept ordering one course after another: first some small bites… then, as we lingered, a full dinner meal… then, as we still lingered even more, a round of desserts… and then, after the grandparents had taxied back to the hotel and even the others had called it a night to get sweet Maia to bed, one more dessert as Millie and Addy continued their conversation at full speed like two sisters who haven’t seen each other in months and have SO MUCH to catch up on.
I lost count of how many times these young ladies would pause in the middle of their conversation, and stare at the other, saying, “Sorry, I just — it’s crazy — there’s someone here who looks LIKE me!”
Or, “I just can’t get over how there’s another face like mine at the table.”
Or, “It’s so weird to be with someone who looks LIKE me!”
Both of these young ladies were clearly affected by the presence of someone who looked just like them.
I hadn’t quite expected that.
At this point in the evening, only Keith and I remained at the pub with them (eating our second desserts). It was obvious to us that neither of them is terribly burdened by their port wine stains. They both enjoy looking different, and they’re accustomed to being unique. They’re used to being the odd face in the room, and they’re generally okay with that. They’re beautiful, confident, charming young women.
But that didn’t diminish the surprisingly profound impact of being in the room with someone who looks… like them. That was a new experience for both of them.
We’ve taught Addy over the years to find likeness in myriad ways. We’ve taught her to feel “like” another person with any similar trait, whether the trait is a similar hair style, same brand of shoes, matching article of clothing. We want her to feel “like” anyone and everyone, to push back any feelings of isolation that an odd-looking face might otherwise bring to her social encounters.
So it was a surprise to me that being in the presence of a face “like” hers affected Addy so profoundly. She was utterly delighted to find likeness — to find THIS likeness next to her, at the same table, looking JUST like her face.
“I can’t believe there’s someone else who looks like ME here!”
I heard many variations of that as the evening progressed, from both of these beautiful ladies.
When we finally called it a night, the pub was quiet with just a few lingering patrons, and the street was dark. Addy and Millie hugged as we departed, and we said we DEFINITELY need to do this again.
We will meet up again. After seeing the impact it had on these lovely, confident young women to be with someone else who looks “just like” them, I will be pondering new ways to meet up with new friends who also look uniquely similar.
It was, in short, a beautiful experience to meet these dear readers in person.
We thank Maia’s family for making the trip from Scotland to London (travel is never easy with a little one!). Keith and I SO enjoyed connecting with other parents in person who have thought and wondered and pondered and worried the same things we have; that’s an experience we won’t forget.
We thank Millie for making the trek across London to join us. The rest of us without port wine stains — parents, grandparents, siblings — loved connecting with this articulate young woman just a few years ahead of Addy, who could share her experiences with us.
Let’s do this again sometime.
We may live in the midwestern United States, but we’re not far from the airport, and we love to travel.
Email me at whathappenedtoherface@gmail.com to let me know where you and your port wine stain live, and we’ll gladly come celebrate it with you, too. It would be a privilege.
Keeping Your Odd-Looking Teen Safe From Online Bullies
It can be a scary thing to raise an odd-looking child.
In the best of circumstances, we come to parenting already loaded down with our own memories, baggage, and fears. Then, when we meet our darling baby and find that they look… well, unique… we suddenly worry a thousand times over that this child will be the target of every bully and the butt of every joke for the rest of their life.
It can be overwhelming.
But over time, and day by day, we equip our child to handle the loud questions, the finger-pointing, the snarky comments, and the mean encounters with humor and with grace.
This takes a lot of intentionality: talking about every encounter; equipping her to answer the questions herself; going out into the world together — a lot.
And with time and effort, we find ourselves satisfied that they’re growing into a well-rounded, socially empowered, and uniquely confident individual.
But… that’s just real life.
That doesn’t even begin to touch on virtual life.
Addy was very young when social-media culture took off like a rocket. Constant comparison, airbrushed photos, self-loathing of flaws, body insecurity… it became rampant among teens, and I was deeply concerned about launching a soon-to-be-teenage girl with an odd-looking face into that world.
Her childhood was also the era when younger and younger kids were being given devices like iPads and cell phones to occupy their attention and connect them to the world — for better and for worse.
There are enough heartbreaking stories of bullying in real life; opening up the portal to connect our odd-looking daughter to the seemingly infinite flow of virtual bullies, too, was a gamble we didn’t want to stake her development on.
So, in a rather unusual move among our peers, my husband and I decided to NOT get Addy a cell phone.
This means that Addy is now sixteen, and she STILL has no cell phone.
No iPad
No phone number.
No social media accounts.
Obviously, we’re not anti-internet; I’ve been blogging about Addy’s face for years, and my husband and I both have multiple devices ourselves so we can access the internet 24/7. But our children don’t — especially the odd-looking one who stands out.
We had other reasons to keep devices away from our kids, too: our increasing awareness of the impact of screens on cognitive development, strong addictive tendencies in both our family lines, our own lost hours scrolling, and a high value on real-life interaction skills. All of these things made us a natural fit for analog parenting.
But Addy’s face was definitely a big factor. A young girl’s confidence is already on shaky ground in the best of circumstances. Bullies are already a risk in real life for a girl with an odd face. For us, it was critical to control the flow of comparison, trolling, and negativity into Addy’s developing brain and character by limiting her engagement with the world to real life. We simply closed the door to the infinite virtual world. We’d heard too many horror stories.
An Important Note: Please know that we do NOT judge you if you make different choices. We have MANY friends who need to equip their kids with communication devices for various reasons! I’m simply sharing our experience here of making the choice to leave that can of worms closed entirely.
When other parents find out that our kids don’t have cell phones, the first question we field is this:
Hasn’t that kept her unplugged from vital connections and aspects of our now-so-virtual life?
Well, let me answer that with a story.
Once upon a time, recently, Addy was involved in an activity, and the adult leading the activity set up a virtual group chat for all the girls. (This adult is savvy & awesome and did everything right.) Addy, who did not have a cell phone (and still doesn’t) missed out on the group chat. She was not “in the know”.
Sounds terrible, right?
Missing out on virtual social interaction with her peers?
In these formative teen years when friendships are everything?
Yikes!
I recognized this disconnect, and I took Addy aside and said, “Listen hon, I’m really sorry. I know your friends are all connecting on this channel, and you’re missing out, all because your dad and I won’t get you a phone. That can’t be easy, and I just want you to know that I see that.”
She laughed at me, shook her head, and told me what she was really missing out on:
Within hours of this awesomely intentional adult leader setting up the supervised group chat… a “shadow chat” was set up, which included all of the female peers… except one. They picked a girl they didn’t like, and excluded her from the group chat. And this shadow chat became henceforth the primary channel of the girls’ communication.
Addy, not being part of this virtual group of females, was not part of this exclusion. She wasn’t part of the singling-out. She wasn’t herself singled out & excluded. She missed out on the alienation. She missed out on extra teen-girl drama and politics (as if real life doesn’t bring enough of them!).
So while I am no parent’s judge – you do what works for you – if you can avoid the phone, please do. It will help your unique-looking child avoid that whole extra universe of “Even More Ways To Be A Stinky Teenager” (with all its accompanying messes, insults, comparisons, gossip, and exclusions). Real life has enough of that stuff; spare your odd-looking kid the extras, if you can.
We have many dear friends who struggle daily with their teenagers to stem the flow of negativity coming through their handheld portal to humanity’s cesspool. They set up blocks; they turn off their wi-fi; they add trackers; they search histories; they read texts… and they’re exhausted.
But avoiding that portal altogether is, in my experience, a simpler — if rarer — choice, and it’s one I heartily recommend for anyone launching a unique-looking teen into a world full of stinky humans.
It’s not that avoiding a phone will avoid all the drama. All the same dramas exist in real life; they just come in more manageable doses in any given day, because they’re limited to physical reality. (There are only so many humans we can encounter a single day. But virtual access is practically infinite.)
Avoiding the phone can help you stem the flow of overwhelming negativity long enough to help your unique-looking child make it through these vulnerable years of cognitive development with her identity and self-esteem intact.
Fun fact: We did recently break down and get a phone for our three kids (ages 12, 14, and 16)… but it wasn’t quite the phone they had been waiting for:
It’s right there in our kitchen / dining room / living room. (We have a small house, so it’s in the middle of EVERYTHING.)
Even the dog conspires to listen in to the teenagers’ conversations.
There have been moments, as above, where I’ve questioned the wisdom of keeping our kids out of the world of virtual interaction with their friends. But then, without fail, those virtual interactions unnecessarily go sour (exponentially more than in-real-life interactions going sour), and we’re reminded that it’s still okay to make our kids focus on the real world for now.
The real world has enough stares, questions, pointing, and sneering. We simply wanted to keep Addy (and her odd-looking face) shielded from an endless stream of more of it. And it’s turned out to be a fabulous choice for all three of our kids.
(Our 12-year-old daughter doesn’t agree, but she’ll be fine.)
So if you’ve been waiting for permission to stem your kid’s handheld access to the cesspool that is the modern internet… consider it granted. Your child might balk, whine, beg, or cry. That’s okay. They probably did that when you wouldn’t give them an entire jar of frosting to eat at once, too, because you were looking out for them. You do what’s best for your kid, even if they don’t like it.
And if you want them to exclusively focus on the real world now, then you can. It’s still the real world. Empower them there now. Teach them how to communicate and handle conflict in the real word. Teach them how to make eye contact and have a conversation. Teach them to observe the world around them and be aware of each situation. These skills aren’t easy for anyone to learn, and it can require even more daily intentionality when you add an odd-looking face to the mix.
These skills will translate to the virtual world at the right time, too. Your child will be perfectly capable of carrying on with life virtually when they’re ready to get their own personal portal to that world. But they will have skipped a lot of unnecessary heartache and drama and energy drains and time drains along the way, especially in that oh-so-tricky time of awkward teenagerhood and social drama.
I do find it funny (and perhaps ironic) that Addy’s face has been plastered on the internet for over a decade now. I’ve been blogging about her and posting pictures of her for many years. Obviously, I’m not averse to the internet; I love connecting with all of you! I’m more pragmatic than paranoid.
Therefore, this isn’t a matter of sheltering my kid from reality; it’s simply a matter of helping my child develop into the human she has the potential to become, without the trolls of the world having unlimited access to cut her down 24/7 in this most vulnerable time.
In all, it’s been a remarkably simple and easy way to keep our odd-looking teenager safe from online bullies: don’t allow them a portal to her at all.
No site-tracking, no time-blocking, no contact-tracing, no erased-history-recovering, no negotiating, no internet controlling, no Wi-Fi-password-changing, no text eavesdropping, and no long letters to senators about how dangerous Meta is to teens.
It’s been absolutely delightful.
If you have any questions about getting to (or through!) the teen years, please feel free to reach out & leave a comment below. I love hearing from and connecting with other parents like you, and I’d be happy to share more of what’s worked for Addy!
P.S. Yes, she has her driver’s license, and she’s driving. Without a cell phone. She has to know the route ahead of time. Like we all had to, once upon a time. 😁🚗🗺️📌
P.P.S. Yes, we sent her off with a group to travel for a couple of weeks this summer, and they traveled to Europe. So she traveled to Europe without a cell phone. Her birthday present ahead of that trip was a digital camera so she could take pictures. I didn’t know exactly where she was at every minute; she was fine with that.
Catching Up with Teen Addy
When Addy was born, there were a few different “future” seasons that made me nervous as a mother.
❣️I was terrified of her little heart being broken on the playground in early childhood – those moments where she would run to the swings to play with new friends, only to have bewildered stares and hold-everything “WHAT is THAT?” questions thrown at her instead.
(She survived those just fine. Kids may appear rude, but they’re just exhibiting unpolished curiosity. Once they know what “THAT” is and they’re assured she’s not in pain, the swing-pushing and new friendships carry on as normal.)
❣️I was terrified of her being THAT kid in grade school. You know the one – the easy target for the class bully, who’s usually too lazy to pick on everyone, so they fixate on that one weird-looking kid instead. I was worried she’d be THAT kid, every year, in every classroom.
(She was fine. She got a few power plays from wannabe bullies, but they were few and far between, and nothing stuck. Being unique got a LOT cooler sometime between my childhood and hers!)
❣️And I was definitely terrified of the teenage years. I saw those looming ahead when social-media culture was really taking off like a rocket. Constant comparison, airbrushed photos, self-loathing of flaws, body insecurity… it was rampant among teens, and I was deeply concerned about launching a teenage girl with an odd-looking face into that world.
Well.
Addy turned sixteen (!!) recently.
And the status of the teen years so far?
Fine.
She’s fine.
Awesome, in fact.
So, since I’m probably not the only parent looking ahead to the Teen Season with some trepidation, let me catch you up with Addy and how she’s doing, so that perhaps you, too, can breathe a sigh of relief for your own little one.
✨
First: How does she feel about her port wine stain at sixteen?
Addy LOVES her port wine stain. She wants to keep it and its current shape. Laser treatments will help it fade, and fade unevenly at that. (The vessels in the front of her port wine stain are thicker and tougher than the vessels on the side of her face, which will fade faster and cause the overall shape to change.)
So, since Addy has decided that she loves her port wine stain, we have done one – and only one – maintenance laser treatment in the last few years. I write more about Treatment #44 here; in summary, we did a clinic appointment (rather than a surgery under anesthesia), and she was awake the whole time.
The best part? The treatment successfully contained some of the growth while maintaining the shape of her port wine stain, to Addy’s liking.
✨
What about her social life?
Addy loves humans. She loves getting questions about her face. She loves talking about it. She loves asking other people about their unique features.
She knows that imperfect people ask imperfect questions, have bad days, act crabby and mean, and can exhibit some awful behavior. She grew up with that awareness, as we prepared her to handle the myriad questions about her face with humor and grace.
In the teen years, that humor and grace have been incredible assets. She’s been training for this! Teenagers have bad days, act crabby and mean, and can exhibit some awful behavior; she lets most of it roll off her back. It takes a lot to get under her skin now.
And there has been no uptick in bad social encounters. So to those parents who are especially worried about the teen years, let me reassure you that by the time your child gets to high school, there’s a very good chance that all the other teenagers have probably already seen a lot of unique-looking humans, and your child probably won’t turn any heads or attract any undue attention for their odd face.
I say “probably” because anything can happen, but teens seem to be a lot LESS curious about the world around them than small children are, and will probably not even notice an occasional odd face. (And if you have your child in the same school from preschool through high school, as we do, then her face will be old news and already ultra-familiar to all her classmates.)
In fact, the classmates (and even the teachers and administrators!) at Addy’s school recently celebrated Addy’s birthmark on Vascular Birthmark Awareness Day, which I wrote about here.
That said, we still have some hilarious encounters, but they’re usually with younger children (like those in grade school or early middle school).
✨
Here’s an example:
One evening recently, Addy was sitting next to me in the bleachers at a high school basketball game, and we were just a few rows up from the court. Two girls walked by in front of us (they were maybe 10 years old), and when the girl closest to us saw Addy, her eyes practically bulged out of her head and her jaw dropped open.
She kept walking to keep up with her friend, but I saw her tug on her friend’s elbow, turn back, and point toward us. Apparently, her friend hadn’t seen Addy, so when there was another lull in play a couple minutes later, these same two girls walked coolly and slowly in front of us, very intentionally walking ramrod-straight, facing forward, eyes STRAINING to the side to stare at Addy as they walked by. I chuckled – I knew exactly what was going on – and pointed it out to Addy. She thought it was adorable that they were trying to get another good look at her odd face.
A few minutes later, these girls returned with a third friend, and did the same thing, ostensibly ‘showing’ their friend the sight they’d discovered. It was hilarious. These girls were clearly thinking, “WOAH!” but they were also trying SO HARD to play it cool and not stare, but they were totally staring as they did the walk-by, and it was extremely funny to watch.
Addy made sure to turn her head slightly for full visibility to satisfy their curiosity. They were delighted; they still played it cool.
So overall, the social encounters have been fewer and farther between, and as funny as ever.
✨
What about makeup?
Addy has what I’d call a healthy relationship with makeup. She uses it to enhance her features, including her port wine stain. She uses a tad bit of foundation on her face, but avoids putting it over her port wine stain, choosing instead to leave it at its full natural color. She enjoys blush but usually leaves it off, preferring to maintain a high contrast between white cheek and port-wine-stain cheek.
She’s heavy on the sunscreen, knowing that her port wine stain will be a bit more sensitive to burning and she wants to avoid injuring that skin. Smart kid.
She loves to look elegant, dressing up for school dances like a modern-day Grace Kelly.
(Had to share: For her formal last year, this lucky girl got not one but TWO parents as chaperones! Every freshman’s dream, right?)
(She had no parents chaperoning this year’s dance.)
✨
Finding Likeness
Addy still loves to find likeness in the world around her, finding her port-wine-stain pattern in everything from plants to French macarons.
✨
Addy remains the same outgoing kid who loves to interact with humans. I call her a “human golden retriever,” after the one canine breed that’s as easily social as she is.
She doesn’t worry excessively about her appearance, perhaps because her face has already been the topic of so much conversation and work over the last sixteen years, from strangers’ questions to laser surgeries and doctor’s appointments.
She doesn’t worry excessively about what other people think, perhaps because we had to train her early to let go of any concerns there, and prepare her to turn heads (for better or for worse).
She does worry about other people’s hearts, knowing that when they exhibit mean behavior, they’re probably acting out something they’ve already received themselves along the way, and she wishes better for them.
✨
The teen years were an unknown factor in the early days of our journey with Addy. Now that they’re here, I want to reassure all of my fellow parents of odd-looking children that it’s SO much better here than I anticipated.
Perhaps it’s better because we’ve already been “in training” for so many of the teenage dynamics. After all, when you’re parenting an odd-looking child, you prepare them intentionally to handle things like meanness pretty early.
Now, here in the teen years, that humor and grace are paying dividends, and it’s awesome.
This is a really fun season.
Your kiddo will be fine.
.
.
✨
P.S. I want to mention one additional note about our approach to the teen years that has helped simplify the journey for us:
Addy has no cell phone.
She is sixteen.
I will write more about that strange choice soon.
(Please know that I’m NOT judging you if you make different choices. I know many parents who need to equip their kids with communication devices for various reasons! But I will tell you that it has made the teen years MUCH easier to keep that can of worms closed entirely.)
Glaucoma-Free (so far!)
When a port wine stain reaches up to the eye, some unique complications can result from the hypergrowth of blood vessels.
Because the blood vessels grow with the child, they continue growing ever bigger as the child grows. When the port wine stain crosses over the eye, this can lead to increasing pressure, or glaucoma. (I’ve met some port wine stain peers who have had glaucoma since childhood!)
Addy has been regularly checked for glaucoma since she was tiny, and the good news we got from her most recent ophthalmology appointment… is that she is glaucoma-free! Her eyes are working fabulously, and there is no additional pressure detected. This makes mom VERY happy. If she’s glaucoma-free now, then she’s probably in the clear. (She’ll still get checked throughout adulthood, but it’s much less of a concern as her growth slows down.)
Glaucoma hasn’t been the only concern, of course. Those big blood vessels in overdrive can cause other things, too — some of which are actually kind of funny.
In Addy’s case, when she was little, the overgrowth of blood vessels inside the port wine stain effectively close off her tear-drain-duct on the right side, causing regular overwatering of the right eye (when her normal ‘tears’ keeping her eye moist had nowhere to go). She looked like she was always crying, but only out of one eye!
To treat this, her ophthalmologist simply inserted of a drainage tube down below her right eye. They simply did this during a routine laser surgery, since Addy would already be under anesthesia. It helped to re-open the drain, and the excess tears on the right side were resolved. Easy, done.
Complications from her port wine stain will always be a concern, but as Addy gets older, our concerns shrink further. As her growth slows down, her Port Wine Stain slows down its growth, too.
(Of course, all bets are off at pregnancy, when growth goes into hyperdrive again! I know one woman who got zapped every month during her pregnancy because her Port Wine Stain started growing again like crazy.)
I expected the teen years to bring more concerns, not fewer — but as far as Addy’s face goes, it’s been nice to breathe a sigh of relief and see some of these worries settle themselves out. Her teeth (pushed to the side with all that extra blood flow and early growth on the right side) have been straightened with braces. Her right eye’s tear drain is fixed and draining normally, no longer overwatering. And her ophthalmologist says that we can pretty much not worry about glaucoma, since she’s in the clear there already.
So to all the parents out there of port-wine-stained littles, I can tell you that one by one, your worries will settle, and the menu of possible complications you might have to deal with — which seems overwhelming now — will shrink as your little one grows. There will be LESS to worry about, not more, as you reach new milestones and check these things off your list.
Your little one will be just fine.
Laser Treatment #44 for her Port Wine Stain
Addy recently underwent her forty-fourth laser treatment for her port wine stain!
Port wine stains like Addy’s need to be treated regularly, much like weed-whacking in a garden or yard. This is because the crazy overgrowth of blood vessels that originally created the port wine stain in utero also continues to grow with the rest of the body throughout childhood.
The laser treatment, in simplest terms (because I’m a mom, not a doctor), shoots a hyper-focused beam of light at the port wine stain; that light is absorbed by the blood vessels, which heat up and die. (Their bursting is what causes crazy purple bruising after a laser treatment.)
But port wine stains vary in their depth and breadth. If the error occurred early in utero while the body was developing, then the port wine stain will be deeper and/or cover more skin; these are harder to treat. If the error occurred later, then the port wine stain will be shallower, and probably smaller in size; these are easier to treat.
The lasers can only sizzle up & kill the top layer of blood vessels. So a deep port wine stain with a lot of layers of overgrown blood vessels will be tougher to treat; they’ll appear to be “resistant” to treatment, when in fact there are just a ton of layers to zap through.
It doesn’t help that the child’s natural growth fuels further blood-vessel growth, too — and that’s why port wine stains get thicker and darker and (and perhaps bring more complications) with age.
So between the deep layers and the constant growth, Addy’s treatment schedule has looked a lot like weed-whacking in an overgrown garden. We would take a whack at the overgrowth of weeds, then wait a month, and then take another whack at the next layer.
Addy’s first treatment happened when she was five weeks old, under full anesthesia. She continued to go to Children’s Hospital outpatient surgery almost every month for the first few years of her life, in order to get laser treatments for the port wine stain on her face.
Her stain was stubborn and deep! If you’re reading this and you have a baby with a port wine stain, please don’t fret — many port wine stains are NOT as deep as Addy’s, and they can go away with fewer treatments.
(And if you’re still worried that it won’t go way, you can read about Addy’s fabulous encounters with other humans here, here, and here, which only happened because her port wine stain was so visible! There are perks to being noticeable!)
Now that Addy is sixteen, she’s decided that she loves the shape and shade of her port wine stain, and wants to leave it just as is.
This means that she’ll need an occasional ‘maintenance’ treatment to contain (weed-whack!) its growth, but otherwise the treatment schedule has slowed down to maybe once a year.
This most recent laser treatment was unique: it was done in the clinic, and not in the hospital under full anesthesia.
This was new for us; her first 43 laser surgeries had all done at Children’s Hospital under full anesthesia. (This is because squirmy small children + big loud blinding laser machines pointed at their faces = sedation!)
For laser treatment #44, she saw the same dermatologist, but we went to his clinic for a quick procedure (no anesthesia).
Addy was a little bit scared going into this treatment, even at her age. She was nervous that the laser machine would be loud and would hurt her face.
She wasn’t wrong. The machine makes a loud zapping sound, which is a bit unnerving when your eyes are covered with a protective shield so you can’t see what’s coming. And the laser feels like a rubber band snapping the face a hundred times a second, so it’s not exactly painless.
But it was SO fast. She was done in about fifteen minutes. Easy.
And being a teenager, she grabbed my phone and took a selfie. Because, cool face.
So while she definitely prefers to be knocked out cold for the procedure, she appreciated the speed with which we were done. And there was no ‘anesthesia hangover’ (which can make a person a little wobbly emotionally and otherwise for a few days afterward). And there was no need for a pre-op physical (which is necessary within the week before they’ll be going under full anesthesia). I appreciated the simplicity of it all.
There are definitely perks to both treatment approaches (under anesthesia and in-clinic). Sometimes insurance guidelines or treatment availability dictates one approach over another, and you may not have too many options.
But either way, they work, and we’re grateful for it.
If you’re looking ahead to treatment options and you want to get into this a little bit deeper, please leave a comment below and I’ll be happy to answer any questions you have!
Thank you, and Happy Vascular Birthmark Day!
Addy informed me recently that we’re in Vascular Birthmark Awareness month (the month of May)! And apparently, on May 15, people put red hearts on their face or body wherever their loved one has a vascular birthmark, like a port wine stain or hemangioma. (Check out the difference between port wine stains and hemangiomas here.)
In a spectacular parenting faux pas, I totally forgot that this was coming. I got busy with other things as May 15 drew closer. My head was filled with all the things I had to do, like Zoom meetings with clients. And I forgot about Vascular Birthmark Day.
Until that day.
Addy asked me that morning: “MOM! Are you going to do the thing where you put the red stuff on your face?”
Me: “Honey, I have zoom calls today, I can’t be just putting something weird on my fa-“
[Realizing she was talking about vascular birthmark day, where people put red hearts on the spot their loved one has a port wine stain…]
[Awkward silence…]
Me: “Hand me that lipstick.”
And that’s how I ended up in meetings with a big red thing on my face (just like Addy)!
At School
When I dropped Addy off at school, her school director, Mr. Martinez, asked me for the story behind the heart on my cheek. I told him about vascular birthmark day for Addy… and that’s how Mr. Martinez ended up with a heart on his face, too!
And then… Addy’s friends added hearts to their faces.
And then… friends of Addy’s friends got in on the action, and added hearts to their faces, too.
And then… other teachers asked their students why so many kids had hearts on their faces, so they asked to be hearted-up, too.
And so, by the end of the day, there were A LOT of students, teachers, and staff with red hearts on their faces, for Addy’s sake.
Even “Francis the Mouse”!
I cannot overstate my awe at the love this community shows. I see it all the time as this little school community comes together for each other in different ways. I know the humans here are awesome. But the sheer volume of love we receive from them never ceases to amaze me.
When Addy was born, I feared for her. I feared that she’d be the easiest bullying target in the room — in every room she’d ever walk into. I feared that the pointing, the stares, and the poking of her face she was receiving regularly would make her want to hide away and not be seen. I feared for her confidence, for her mental health, for her perspective of her own beauty.
And while Keith and I have done a lot of work to get her to this point where she’s sixteen, confident, and comfortable (which I’ll write more about soon), we haven’t done the work alone. We haven’t walked this route alone. At every step, we’ve been accompanied by teachers, friends, staff, grandparents, extended family, and hundreds of other people who have spoken life and love and beauty into our odd-looking daughter’s ears.
This May 15 was overwhelming for this mom.
To everyone who put a heart on for Addy, thank you.
Thank you.
Happy Mother’s Day (to the Surprised Mothers)
A very happy Mother’s Day to everyone whose baby turned out a little bit… differently… than expected.
To the mother who met her baby for the first time and thought, “Uh-oh”, but didn’t say it out loud (and maybe even kicked herself later for having that instinctive first response).
To the mother who met her baby and asked, “…That will go away, right?“ but deep-down knew that it wouldn’t (and later pondered the ethics of trying to “fix” her child).
To the mother who met her baby and realized, “I haven’t the foggiest idea how to handle THIS” (and still kinda doesn’t).
I see you, and I wish you a Very Happy Mother’s Day.
Parenting is an exhilarating and terrifying ride in the best of circumstances. To those whose launch into motherhood included navigating this strange (and strange-looking) unforeseen new territory , I salute you.
You have fielded bad medical advice. You have fielded weird questions. You’ve over-thought every social encounter past, present, and future. You’ve wondered how the world will receive a child looking like yours.
And I’m here to tell you that it will be OK.
I’m in what is arguably the worst season of parenting – the teenage years. Body insecurity. Hormone swings. Friend drama. Social pressure. The dawn of dating. The rise of academic pressure. Sports schedules. And looking weird on top of it.
And it’s awesome. Truly – every. single. minute.
My teenage girl with the weird face is thriving. Yours will, too.
I know that doesn’t wipe away your fears, or keep you from feeling the stress right now. Your child looks unique. That brings unique fears.
But it also brings some uniquely fantastic adventures. There are bonuses to being memorable. The blessings your unique-looking kiddo brings this world are exactly what this world needs right now.
So take a deep breath. Your parenting path isn’t quite what you might have expected, but you’re doing great. Your child is gorgeous.
And they’ll be fine.
Parenting Strategy #9: Be Honest About the Error
Parenting Strategy # 9: Be Honest about the Error
In my last post, I said that it’s important to treat facts neutrally. Your child needs to know the basic facts about her face: you have a birthmark. The birthmark is a port wine stain. A port wine stain is extra blood vessels.
And (are you ready?): That birthmark is an error.
The port wine stain is an error. Something went wrong in utero, and the nerve that was supposed to send a signal to its related blood vessels to “Stop growing!” never did. So they kept growing, even though they weren’t supposed to.
That’s not negative commentary, it’s a fact. And we face that fact honestly and neutrally.
Let me stress that – you must be neutral when you’re honest! You don’t mope, groan, cry, exaggerate, or sigh when pointing out that an error occurred. It’s simply a value-neutral fact. It’s an error.
I can’t tell you how important this is. It is the foundation of grace. Addy knows that she’s beautiful and that she’s fearfully and wonderfully made, and that she is not perfect… Because no human is.
Let me repeat that: no human is perfect. That is the message your unique child needs to understand to the depth of their soul. We all have errors. None of us is living in the Platonic ideal of a human body. We have moles, we have quirks, we have genes, we have illnesses, we have mutations – many of them just too small or out-of-sight to notice. Someone like Addy might wear their error front & center, but everyone is flawed, somewhere, somehow.
That’s why the fact that a port wine stain is technically an error doesn’t have to be negative. I’m flawed, you’re flawed, everyone is flawed! Her port wine stain doesn’t have to be ‘better’ or ‘worse’ than any of your features. It simply is.
We can, and should, learn to appreciate the beauty in other humans’ traits, many of which are themselves errors. (Even adorable freckles, after all, are little bits of pigment gone awry.) But remember that you don’t have to erase the fact that an error exists in order to call it beautiful.
We’re afraid that if we call a feature less than perfect, we’re somehow being negative or derisive. And so we call it perfect instead – as if anything less than perfect can’t be beautiful.
But it’s okay to acknowledge an imperfection, even to the point of working to fix it with powerful lasers, and also see the beauty in it all the while. It’s not either-or. It’s both-and.
Don’t be afraid to call that beautiful birthmark an error. It may actually, unexpectedly, feel validating for your child to know that yes, something went wrong, and that’s okay. She doesn’t have to feel ‘perfect’ about it. This isn’t a big deal. Everyone’s got something. And even while the laser surgeries make progress on fixing the error, she can feel beautiful with it all the while.
As your child understands that this birthmark is an error, she may start noticing all the other errors around her. This is healthy; she’s finding camaraderie. Addy loves knowing that my spine is shaped like a long ‘S’ from scoliosis, and that her dad has a dark birthmark on his side. She loves finding strange markings and alopecia and missing limbs around us. Because she knows that everyone’s got something a little ‘off’, and she thinks that’s pretty awesome.
So when you’re talking to your child about their birthmark, go ahead and be honest about the fact that it’s an error. It’s an error, and that’s okay. That doesn’t mean it’s not beautiful; it’s absolutely beautiful. It simply means that she’s not perfect.
Which means, really, she’s just like everyone else after all.
.
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A few other “Strategies for Parenting a Unique Child”:
Parenting Strategy #8: On Talking
Parenting Strategy #7: Get Out
Parenting Strategy #6: Find Likeness
Parenting Strategy #5: On Makeup
Parenting Strategies, Part 2: On Beauty
A Few Parenting Strategies…
Parenting Strategy #8: On Talking
When you have a child with an odd-looking face, you realize that you’ll have to talk about it… with her… at some point…
And that’s a terrifying prospect.
You want to be the first voice and the last word your child hears about her face. But what do you say? How do you bring it up? You want her to know it’s not taboo, but you also want to avoid Making It Into An Issue.
So what do you do?
Parenting Strategy #8: Speak Neutrally.
You speak neutrally about the birthmark.
It’s not a beauty mark, and it’s not an ugly thing; it’s simply a birthmark.
Your job as parent is to teach your child what the thing on her face is. Provide facts. Keep it simple.
You may be tempted to pre-empt any sad feelings by skipping the facts and rushing straight to the compliments, like I was: “That’s your beauty mark!”
But if she only knows it as a ‘beauty mark’, then she won’t be emotionally prepared for another child bursting that bubble by blurting out that it’s not beautiful.
More importantly, if you only ever talk about the birthmark positively like it’s an absolutely awesome thing, then you may not be leaving the door open for your child to discuss a negative experience around it later. She needs to know that door is open.
The birthmark is a fact. It’s just there. Yes, you should also teach her that it’s beautiful, and that she’s extra beautiful with it. Yes, compliment her up and down a million different ways, but do not neglect to give her a foundation of dry facts. She needs to know what’s on her face.
Here’s what it sounds like: When she becomes more aware of the world around her (around toddlerhood), spend some time looking into a mirror with her. She might look curiously back and forth between your faces, or she might point to her birthmark for the first time. When she does, keep it neutral and factual: “That’s your port wine stain.”
That’s it. You may be afraid that if you’re not super-positive about the birthmark, she’ll feel negative about it. But that’s not true! Young children live in a black-and-white world of facts. Facts are incredibly reassuring as they order their universe. Don’t worry about being too dry and neutral. Keep it simple. She’s not doing a philosophy dissertation yet.
Tell her what it is: “That’s your birthmark.” “Your birthmark is a port wine stain.”
Help her differentiate: “You have a port wine stain.” “Mommy does not have a port wine stain.”
Empower her to pronounce: ‘blood vessels’, ‘laser surgery’, ‘bruise’, ‘pink’, ‘purple’.
At her laser surgeries, give her more facts for context: “A port wine stain is extra blood vessels.” “The laser zaps the extra blood vessels.” “Your laser surgery causes bruising.” “The purple is bruising from the laser surgery.”
Don’t get emotional. It’s SO tempting to jump to opinions, especially when your child looks in the mirror after a laser surgery, because it will feel like a knife to the gut when she stares in shock at her own purple face, and you will want to blurt out through a choked voice, “YOU ARE SO PRETTY AND YOUR FACE IS PERFECT AND I LOVE YOU SO MUCH!”
But she’s probably not upset by it yet – she’s just surprised at the change. If you jump in defensively, then she’ll conclude that something must be wrong with her face. So keep it neutral, and teach her the facts: “Your birthmark is purple now, because of your laser surgery.” Don’t assume she’ll figure that out on her own. Then compliment her on how awesome the purple is; after all, it is a pretty fantastic color. (As Addy told us one day before preschool, with a voice full of pity for her peers, “Not everyone gets to have purple on their face.”)
Talk to her about the likelihood that other people will wonder what’s on her face. Help her understand that it’s okay when they do. Don’t pre-empt negative encounters by saying something like, “If ANYONE ever makes fun of you for this, you just WALK AWAY!” You don’t need to go there yet. Don’t set her up to assume that encounters will be negative. Most of them aren’t.
Instead, just give her a neutral heads-up that people might ask about her face, and teach her the basic facts about why it’s unique. “Other kids don’t know what this is.” “Other kids don’t have one.” “Other kids might ask about this, because it’s different.”
Seriously. That’s it. That’s all you have to say.
And you can always debrief at the end of a school day or playground date with a simple question: “Did anyone ask about your face today?” But, again, be neutral! Don’t interrogate her with an attitude like, “People are idiots so I’m sure something bad must have happened and I need a full report, so sit down and spill it.” That’s too much pressure. Instead, use the same chilled-out tone of voice you might use to ask, “Oh hey, did anyone ask for your autograph today?” (Because it’s pretty much the same thing, right?)
Don’t jump ahead to being defensive. Don’t skip over the basics. While she’s little, linger in the dry, boring realm of neutral facts. Facts are reassuring and empowering as she learns how to speak about her birthmark.
This will tell her that the topic is open for discussion at home, without any pressure to feel one way or another. And this will equip her to answer the questions in public, factually, all by herself, without any stress.
Because at some point, the questions and comments will shift from being directed to you, the parent, to being directed to her and her face. And if you’ve equipped her with the neutral facts, then even when she’s little she will pipe up with an easy, relaxed, disarming answer: “Oh, this is my birthmark!”
And you’ll exhale the breath you hadn’t known you’d been holding, and with a flood of relief you’ll realize: she’s got it. She can handle this. She can speak for herself. She’ll be okay.
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Parenting Strategy #7: Get Out
“Parenting a Unique Child” Strategy #7: Get Out
Addy’s first two years of life saw her tagging along everywhere with my husband Keith while he constructed our house. He’d frequently plop her in the Baby Bjorn carrier, facing out, and take her along on errands to Lowe’s, Home Depot, and Menard’s (often all in one day).
He has a gift of interacting easily and casually with everyone; he small-talked with electricians in the wiring aisle and chatted up every awkward cashier. Addy learned, just by watching him, how to speak casually to other humans, no matter how different.
She joined the game, gleefully leaning forward in that carrier, kicking her chubby little legs and yelling an ever-louder, “Hi! HI! HI!!!!!” to every introverted plumber & roofer they passed in every aisle.
If I’d been on duty, I would never have taken her along on as many errands as Keith did, and I wouldn’t have broken out of my introvert’s shell with nearly as much small talk with strangers. In hindsight, I see the serendipitous value of all their trips outside the home. Through them, she watched and then copied all kinds of comfortable, casual, social interactions.
In the early years, be intentional about getting your unique-looking child out into the world, a lot, with you. They need to see many, many different interactions with the outside world, but they need to be safely in your arms while you handle every encounter with good humor and grace.
Your child needs to hear you say ‘please’ and ‘thank you’ to the cashier who’s a little slow. Your child needs to hear you make polite small talk with the plumber behind you in the checkout line. And your child needs to hear you answer “Is that a burn?” with grace and gratitude, because then she’ll know how to answer the same way someday.
It’s only by modeling it that you’ll teach it. Get your kid out to the store and out to the mall, put down your phone, make eye contact, say please and thank you, and let people ask about your kid’s strange face. Those encounters build up a repertoire of responses for her to use when someone asks her later. That’s how she will learn grace, confidence, and the ability to move on smoothly from awkward encounters.
You don’t want to send her to school having only overheard a dozen impromptu interactions about her face in her young life. The real world is the best place to learn it, and safely in your arms is the best way.
This kind of intentionality takes time and effort. It’s so much simpler to run errands alone on your lunch break! But your child will benefit from the tedious errand-running experiences that might otherwise be missed.
That might be you, your spouse, a grandma, or the daycare lady; whoever it is, give them permission to bring your little one out into the world for lots of little unplanned interactions. Over time, your child will be empowered to socialize gracefully, with a wonderful variety of other humans, regardless of how different she might be from them.
Jennica
What Happened To Her Face? 