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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.

Not-so-Uniquely Flawed

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

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

Haven’t we all?

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

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

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

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

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

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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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.

Kindergarten (preparing for that first day back)

Last week was our first experience sending Addy to Kindergarten with a purple face (bruised from Monday’s laser surgery).

And we have heard from many (more experienced parents, teachers) that kindergarten is around that age when kids transition from cute little ‘Curious Preschoolers’ to largely self-aware and potentially cruel ‘Big Kids’.

Yes, we were apprehensive. Here’s how we handled it ahead of time:

1) Control the Big Picture: We’re sending her to the same little K-12 school she attended for preschool. Which means small classes (like, a dozen kids here), some familiar classmates, and similarly religious families, all of which help tilt the odds in favor of a kindly reception. It’s not foolproof, but I’d be more apprehensive launching her purple-faced into a kindergarten full of 30 young semi-strangers.

2) Talk to the Teacher: We spoke to the teacher, Mrs. K., a month or two ago to give her the heads-up that this would be coming. She (awesome lady!) offered to let Addy speak to the class in a sort of “Q&A session” to explain her bruising when it occurred. (A chance to be the star? Diva? Center stage? Yes, please!) That way, all the questions can be openly asked, the kids can get all the stares out of their system, and Addy’s in control while it happens. Brilliant woman, this teacher.

3) Teacher to Students: When Keith brought Addy to school, Mrs. K. told him that she had spoken to her students the day before (while Addy was at Children’s Hospital) and given them a heads-up that Addy will look different, and she told them to all be polite. I’ll share Keith’s perspective of his morning drop-off in my next post; in the meantime, I can tell you that it worked.

4) Talk to Addy: The thing about talking to a child is that they have the attention span of a ferret, so we had lots of small conversations leading up to her laser surgery, rather than one Big One. We brought it up multiple times in various settings, making sure to be positive and graceful each time.

Again, this is her 30-somethingth treatment, so she knows what happens at Children’s Hospital – it’s kindergarten we were preparing her for.

“Addy, do you remember what happens at your laser surgery?”
“I get popsicles!”
“Yesss… what else?”
“I … get an IV.”
“Mm-hmm… Okay, do you remember what happens to your face?”
“I have a port wine stain.”
“Yep, you do. But… what happens to it at your laser surgery?”
[blank stare]
“Addy, your port wine stain will turn from pink to…”
“PURPLE!” [her favorite color after pink]
“Exactly. But, the other kids in your class, they’re used to seeing your port wine stain be pink… Do you think they’ll be surprised when they see it be purple?”
“Haha! Yeah, they’ll probably be like ‘Wow! It’s purple! How did that happen?’” [she laughs]
“Right! And what will you say?”
[thinking…]
“You can tell them it’s from your laser surgery.” [repeating that line with her a few times so she can say it comfortably] “La-ser sur-ger-“
“HEY!!! MOM!!! Do you remember when we were watching ‘Finding Nemo’ and the little fish swam away from the shark like…” [and she’s off, reenacting a Pixar scene]

That’s about as much as we could do in one sitting. Later, we would bring it up again, casually, and always (ALWAYS) with genuine smiles, because we want it to be ingrained in every fiber of her being that this is not a negative or worrisome thing:

“Hey Addy! When you have your laser surgery tomorrow, what will happen to your port wine stain?”
“It’ll turn purple!”
“Right! And remember, the other kids won’t be used to it. So they might go “Woah! What’s that?!” [laughing, to keep it light]
“Dad, they know what it is. It’s my port wine stain. Remember? They asked about it before, like that one time at the playground when -“
“That’s right, silly me. But…they might ask why it’s purple.”
“Oh, yeah. I’ll tell them it’s my la-ser-sur-ger-y.”
“Good! And… are you going to tell them about the awesome popsicles you’ll get?”
“Yeah! And my princess toys and pink flavor, too!” [Children’s Hospital has some pretty cool princess toys that she loves playing with every time, and they let her pick out a flavor for her anesthesia mask. It’s a ritual, she loves it.]
“Sure, tell them all about that!”
“Dad, I have a question.”
“Okay, sweetie; what is it?”
“How do mermaids poop?”
…Good talk.

We also tried to broach the subject of possible negative reactions. My mom (Nana) handled this one.

“Addy, when you go to school on Tuesday, what do you think the other kids will say?”
“Hmmm. They might be like “Wow, why is your port wine stain purple?”
“Right… And, sweetie, some people might be rude. They might say impolite things, just because they’re surprised. And that’s okay.”
“Yeah, sometimes people are rude. They might not know how to say ‘please’ and ‘thank you’. But other people know how to be polite and then they’re really polite in restaurants and they know how to keep their elbows off the table and – ”
“That’s right, Addy! Addy? Focus on Nana here. Yep, sometimes people are polite, sometimes they’re rude, and that’s okay.
“Okay.” [pause] “Can I drink your hot chocolate?”

And with that, we released her back into the wild.

All in all, we over-prepared her. Her classmates are kind, their parents are raising them well, her teachers handled the situation beautifully. It was almost a non-event to walk into kindergarten with a suddenly-purple face.

I’ll include more from Keith’s perspective of that morning’s drop-off in an upcoming post, but for now I just wanted to share some of our ideas, in case any of you are wondering how to ‘chat’ with your own little ferret. And I’ll post more ideas over time; for now, just know that the overarching theme in any such conversation is to be positive and relaxed. Your child will absorb your attitude. So remember that life is good; talk openly, talk like they’re lucky to be special, laugh about all the reactions they may get, and mention negative reactions with grace and empathy.

Just keep the conversations short, before they derail into Pixar reenactments or deep musings about mermaid butts. Once they start down that path, there’s no turning back…

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Port Wine… Sunburn?

Today I walked the girls down to our local Dairy Queen – it was hot and humid and a perfect day for ice cream. We arrived sweating and flushed. Another customer pointed out to me that Addy might be getting sunburned.

I smiled to myself, knowing that it’s no sunburn, it’s only on one side of her face, and it won’t fade tomorrow. 🙂 It felt nice to have it mistaken for a sunburn. Reminds me that we’ve made progress with those laser treatments – after all, when she was born, it was more ‘mask’ than ‘sunburn.’

(I didn’t correct the lady, I just smiled and nodded and laughed about the hot weather. I don’t mind some good-natured concern.)

“A Painting”

(It’s been a while – sorry.)

Siblings. They’re as honest as every other kid out there.

Addy (who is now 5) just had a laser surgery, which makes her port wine stain darker and a bit blotchy with bruising. Clarence, her 3-year old brother, just noticed it – he pointed to the stain and said “That’s blood!” Addy corrected him nicely: “No, it’s not.” “Yes, it blood.” I interrupted: “No, buddy, Addy’s not bleeding.” “Yes, it blood.”

So Addy explained, “It’s my port wine stain from Dr. Zelickson.” (Close enough.)

Then she added (repeating what she had told me a few days earlier when we talked about going in for another treatment), smiling and touching her cheek delicately, “I pretend that this is a painting.”

The Tables Are Turned…

I took my kids to the doctor’s office for a checkup recently.  While I stood at the desk (in the super-quiet lobby area) filling out forms, Addy suddenly turned to me and asked in a loud voice “Mommy! Why that girl not have any arms?”  I froze.  She jabbed her arm out to clearly point: “Right there!  Why she not have arms?”

Well, this was a completely new experience for me.  Ever since Addy was born, we’ve experienced staring kids, curious adults, and parents’ awkward reactions when their kid asked them loudly “HEY! MOM! Why does that girl have a RED FACE?”  No problem; until recently, Addy was too young to hear the inquiries, and we know little kids are curious.  We often just reassured the other parents with a smile, not sure why they felt so awkward around us.  It’s okay, we’re cool with it.

But that day in the waiting room, the tables were turned; suddenly, I was the parent who was terrified that my curious three-year-old’s questions would be overheard by the girl who was, in fact, missing both arms, and I wanted to do anything to shut her up before I was branded as some backward, insensitive, ignorant lazy parent who can’t even teach her kids to accept other human beings for what they are in our postmodern hypersensitive age of diversity!  (*gasp*) What would people think?! ?

I halted her questions with an awkward combination of The Mommy Death Stare and a loud “shush!!” (yeah, smooth), muttering something about needing to sit down and wait “very, very quietly” for the appointment.  Go figure – the only place to sit down was right next to the young girl who, sure enough, was using her toes to leaf through the pages of the book she was reading, as there were no arms beyond the shoulders.

Then the girl looked up from her book with a soft smile and said quietly to me, “It’s okay, she can ask me anything she wants.  I’m used to questions.”  [“PHEW!  So she doesn’t hate us.  Good.”]  I smiled and thanked her.  She continued, “I don’t mind it when little kids ask me.  It’s the older ones who aren’t nice.”

Hmmm.  Maybe that’s why I’ve never minded kids’ questions; until recently, it’s usually just been the young ones who have noticed and asked about the stain.  So before I label us as the ‘confidently proud and matter-of-fact’ modern parents I thought we were, I have to admit that we’ve never really been the target of any malicious teasing.  Maybe there’s an inner ‘shaken and insecure’ parent waiting to emerge with the right prodding?  Probably.

At least now I understand better why parents silently freak out at their kids’ noisy observations – they’re afraid they’ll be branded as terribly incompetent parents.  And, like the graceful young girl in the waiting room, I’ll reassure them that it’s okay to ask.  No, I don’t think you’re backward or insensitive or a bad parent.  Even the most hypersensitive, postmodern parents have curious three-year olds…

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