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Siblings & Classmates

Mar 5

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

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

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

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

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

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

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

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

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

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

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

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Posted in 3. Addy Stories & Experiences

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Talking to Others

Dec 17

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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.

Posted in 3. Addy Stories & Experiences

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Keith’s Summary of Last Week’s Dropoff:

Dec 1

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

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

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

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

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

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

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

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

Posted in 3. Addy Stories & Experiences

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Ask? Better not…

Sep 5

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A few weeks ago I took my two youngest kids on a routine trip to Wal-Mart. (Don’t judge – as soon as Trader Joe’s offers carts with locking straps for multiple kids and enough inventory to render further errands unnecessary, I’ll be the first one in the door; until then, it’s Wal-Mart.)

As I was saying – I took the two little kids shopping and, as usual, one of them had to go to the bathroom halfway through the shopping trip. So we made our way alllllllll the way to the back of the store, past the bikes and kid toys (seriously, I know your game, Wal-Mart), to the Family Bathroom right next to the employee break area and the “Apply for a Job Here” kiosk. While I was unloading my offspring from the Awesome Multi-Kid Cart, I noticed that the guy at the computer kiosk applying for a job had a port wine stain JUST LIKE Addy’s. But darker. It was pretty cool. And I wanted to know more.

But wait… I don’t dare ask about it. But, man, I WANT TO. I really want to know about this guy and his port wine stain, and on a scientific side I’m FASCINATED by the resemblance to Addy’s – this must be what Addy’s would look like if it was never treated… and it’s dark… really dark… which means it was never treated… So, I wonder if he suffered through it before treatment options were available, and therefore hates the very mention of it… or if he chose to keep it even after treatment options became available, and therefore loves it…?

Ahh, crap. Never mind, kid’s gotta pee; we disappear into the restroom, and when we see him sitting there a few minutes later, I still have no idea what to do, so I just keep walking and say nothing, leaving him there to click away at the kiosk alone.

I wonder what his story was.

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Close Call

Jun 26

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In Wal-Mart today, we passed a little girl, maybe a year or two older than Addy. My little social butterfly gave her a smile and a small wave from our cart, and the little stranger returned the favor, studying Addy closely as we passed by. Before we had completely passed, the girl turned to her mom and said in a loud, excited stage whisper: “Mom!! Did you see her face?!”

I kept pushing the cart nonchalantly, watching Addy closely to see if she had heard. Seemed not to. Just to be safe, I casually said to her, “Addy, you really are a beautiful girl. I’m so glad to be seen with you.” (We compliment our kids a lot, so this wouldn’t be unusual.) She smiled: “Thanks.”

I wonder how she would have responded.

Funny – the port wine stain is so much lighter than it was when she was born, I’ve just assumed that no one really notices it. But over the last year, those blood vessels have grown along with her, making the port wine stain a bit darker (and wiping out some of the fabulous progress we’ve made with all those laser surgeries). So we’re getting more comments than we were, say, a year ago.

Speaking of surgeries, I’ll post soon about the awesome treatment we got at Children’s hospital last month. 🙂

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“Hi! I Have a Port Wine Stain.”

Jun 12

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Tonight Addy was playing with friends outside when she walked up to the other girls’ mother and announced: “I have a port wine stain.”

It was random, but that’s not unheard of with Addy, a social butterfly who will grasp at any possible seeds of conversation. (She once greeted a friend of mine with: “I’m just wearing undies under my dress, no shorts or leggings or tights, because it’s too hot for leggings now that it’s summertime, so just undies.”)

So I’m used to the random conversation starters, but this was THE first time she’s ever announced her stain. To anyone. She’s talked about it recently, yes, but never announced it first.

Which makes me wonder: is she just aware of it more now (with the recent treatment and Dream Night, each of which I’ll tell you about in posts soon), or more self-conscious of it now?

Self-awareness or self-consciousness? And how do I keep the one from becoming the other?

(Note: As in my last post, I openly ‘debriefed’ my mom about it when Addy and I were back inside Nana’s house, I proudly/nonchalantly told Nana about it in front of Addy. Just trying to set a precedent…)

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Addy’s Answer

Jun 7

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Addy has become more aware (and conversant) of her port wine stain – the other day we were walking down our street when a little 3-year old girl politely asked Addy “What’s on your face?” With great self-control, I kept my talkative mouth zipped shut and waited to see what Addy, now 5, could say on her own. A moment’s thought, then: “It’s my port wine stain from Dr. Zelickson.”

(Sweetie, he didn’t give it to you, he just treats it, but whatever, close enough.)

It was a small milestone! She was directly asked about it (instead of me) , and she answered it herself, matter-of-factly and (almost) correctly. She didn’t stumble, she didn’t seem embarrassed.

I know she’ll have more of those conversations (especially with school starting in the fall), so Mommy is glad to see her handle the simple question all by herself. 🙂

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The Tables Are Turned…

Oct 31

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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…

Posted in 3. Addy Stories & Experiences

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Taming Mother Bear

Oct 22

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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…

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The Outcome

Oct 21

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When I dropped Addy off at preschool on Wednesday (the first day after her surgery), I lingered out of curiosity, vaguely chatting with other the other moms and the teacher while watching Addy out of the corner of my eye.  Addy was happily getting settled, greeting the teacher and the other kids, getting into the playtime rhythm.  I noticed that the little kids by us were watching her closely.  A couple even started to follow her, to get a better look at her face while she was walking around.  (Either she was oblivious, or she doesn’t mind an entourage.)  One little boy finally stood right in front of her, stopping her, and stared hard for a minute – then he raised his hand, pointed to her face and asked “What’s that?”

Instinctively, her hand flew up… to the pink barrette in her hair, and she enthusiastically responded with “Oh, that to keep my hair out of the goop.”  [Goop = post-laser ointment applied to cheek]

The boy just stared blankly.  Addy tried again: “GOOP” – saying it clearly, as if the poor kid didn’t hear the first time).  Another blank stare.  “GOO-OOP!”  Nothing.  “GOO-OO-PUH!”

She finally gave up; clearly, he just wasn’t getting it, so she went off to play.

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