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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…

Taming Mother Bear

Last night we went out to eat at Noodles.  It was dinnertime, so there were lots of families with kids.  We found a table in the back, by a family with a couple of little girls who were somewhere between kindergarten and third grade. (I can’t tell kids’ ages, so that’s a guess; older than Addy, still quite a bit younger than tweens.)  While we approached and were getting settled, one of the girls noticed Addy’s face, still quite bruised from laser surgery.  The girl caught her friend’s attention and gestured toward Addy.  They stared wide-eyed.  Then they started whispering furtively together; one kept touching her own cheek while they were discussing the sight.

There was something about their manner that brought back every memory of junior-high-female cattiness – that kind of “Ohmygosh, did you SEE her outfit?” posturing, leaning forward to whisper together importantly, stopping to turn and stare, then ducking back into the gossip.  And it infuriated me.

I could a) ignore them, b) obey my ursine maternal instinct and cross the eight feet between us to give each one a good smack upside the head, c) find a happy medium and just stand there glaring at them until they got uncomfortable, which would have looked weird in public but still been at least mildly satisfying in a passive-aggressive way.

Since I’m not writing this from the local jail, you can assume I went (reluctantly) with Option A.

There were three factors that caused me to pick ‘self-control’ over ‘mother bear’:

1) The girls’ parents were sitting right there, and would have noticed me.  Darn it.

2) Addy was completely oblivious, so… if I’m honest with myself, I’ll admit… no harm done there.

3) There’s a solid possibility that these were actually, truly, good girls.  Girls who would never in a million years intend to hurt anyone’s feelings.  Girls who are too little to understand that their innocent whispering could be noticed, let alone misconstrued.  Girls who have never seen a half-purple face before and are simply trying to figure out what might have happened to it by talking about it together.  Girls who are just old enough to start innocently adopting those chattering female mannerisms that carry such baggage for those of us who survived junior high.

So, I sat down at our table and ate dinner like an adult.  Every once in a while I glanced over to observe the girls, and they seemed to be normal.  I’m not sure exactly what that means (like how nasty the normal ones can get), but at least they weren’t running around hitting old ladies or laughing at people in wheelchairs.  So, maybe I can give them some room to be curious.

I guess I’m learning that it’s a lot easier to handle the questions with humor, than with grace…

A Pleasant Surprise

We recently took a daytrip to a historic small town about an hour away.  After walking around on Main Street for an hour or two on a ridiculously hot day, we popped into the local confectionary for ice cream.  It was crazy busy in there, and while we were focusing on keeping the kiddos away from the colorful displays of treats, I heard the guy next to me in line say “Ah, she has a birthmark!”  I cringed slightly, pasted a smile on my face and looked down at Addy to see if she had heard.  But before I could do or say anything, the guy continued: “Just like me!”

My head snapped up to look at him, and sure enough, this guy in his mid-thirties had a dark red stain on his face, and it was even bigger than Addy’s, wrapping around his shaved head.  I broke into a smile: “Port wine?”  “Yep!”  “Ha, that’s exactly what she has!  Did you ever do any treatments?”  (No questions are ‘too personal’ after finding common ground like that!)  He shook his head: “Nah.  I did one treatment when I was older, but that’s it.”  Then he smiled: “Now I really like having it on my face; you know, it’s something different, no one else has it.”

So here’s a guy with a deep-red stain on his face, darkened a bit with age, wrapping around his skull, and he’s saying he likes it.  Awesome.  I wish I’d had time to get tips from him on how to encourage that kind of confidence, but we were too rushed.  Oh, well.  He still made my day!

Have you ever run across someone who shared a particularly odd trait with you?  Were you as excited as I was to find them?

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