Blog Archives
Comfortable
Posted by Jennica
After Addy de-fogged from her last surgery, she wanted to see what her face looked like. She knows that each laser treatment brings bruising – sometimes darker, sometimes lighter. I didn’t have a mirror with me in the hospital room, so I grabbed my phone and flipped the camera on so it could act as a mirror. She stared at herself for a minute, then observed the bruising with a matter-of-fact, “Well, that’s purple.”
And with that, she moved on to silly selfies. I love her comfort level here, so I thought I’d share a few. She’s post-op, she’s bruised, she’s aware of it, and she’s over it. Her face will definitely garner some double takes when we leave, and that’s okay.
Talking to Others
Posted by Jennica
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
Tags: Encounters, Grace, Humor, Perspective, Port Wine Stain, Treatments
Halloween of Yesteryear
Posted by Jennica
In honor of last week’s Halloween festivities, I thought I would share our family pic from Addy’s first Halloween five years ago, in 2008.
Keith and I had realized that, with all her laser surgeries, it might be the only Halloween in which Addy’s port wine stain was visible enough to be part of a costume.
So we decided to have fun with it.
We figure we can either make her port wine stain into something to be hidden (and therefore ashamed of), or something to be openly acknowledged and celebrated. And our choice has been to accept life, and the stain, as it is. And to have fun with it.
So, yes – I dressed her up as a Dalmatian puppy. And called her “Spot.” You can probably figure out my costume. 🙂
Hey, I have to give her something to hold against me as a teenager…
When We Thought About Treating Baby Addy’s Port Wine Stain…
Posted by Jennica
When a parent ponders whether or not to treat their child’s port wine stain (or any other malformation), they face a conundrum: they’re making a decision *for* their child that will have a HUGE impact on that kid’s emotional development, self-image, self-esteem, and school experience… annnd there’s a slim chance that their child will eventually hate them for it. (So, I guess it’s the same as most of our parenting decisions… Hm.)
A) If we treat this, then she won’t get made fun of as much in school – yay! But then again, maybe someday she’ll hate us for taking away a distinguishing mark that was rightfully hers…? B) If we leave it so that she alone can decide its fate when she’s older, then the damage will be done, both physical (as it may have grown too thick to treat completely) and emotional (as she will have already endured early childhood with immature classmates and the inevitable questions and teasings).
So there we are, with the fate of our daughter’s face in our hands. Obviously, we’ve decided to zap it off. (And we don’t regret it.) We’ll either get a sincere “Whew, thank you, Mom and Dad, for thoughtfully removing the mask so that people can see the true beauty of my face! I’m so glad I get to look like everyone else at prom!” …Or, we’ll get a dramatic “I CAN’T beliEVE you took away the ONE THING that made me unique! Now NO ONE will EVER notice me!” and then she’ll run upstairs and slam her bedroom door and blast whatever emo music the teenagers will be listening to at that point.
No pressure.
Treatment Tips
Posted by Jennica
So, I decided to throw a few treatment tips on here, for those of you looking at treating your child for his or her port wine stain (or, really, anything).
#1: If you bring your kid in for a laser treatment, or ANY treatment, in ANY medical setting, remember this: YOUR CHILD’S CONFIDENCE WILL REFLECT YOURS, SO CHOOSE YOUR ATTITUDE WISELY.
Think of your kid as a lake; you’re the sky. If you’re sunny and bright, they’ll reflect sun & brightness, too. If you’re cloudy & moody, they’ll turn grey & moody, too.
We see this all the time with kids at Children’s Hospital. Kids come happy, ready to play with the toys in the surgery waiting area, and within 10 minutes they’ve absorbed their parents’ tension and worry. They know Something Bad is coming. Something Scary. They’d better sober up and look serious.
Meanwhile, the kids with relaxed parents are carefree, having fun playing with toys and chatting up the nurses. I’m lucky that my husband, who was a stay-at-home dad for Addy’s first two years, is naturally relaxed and very social. So whenever he took Addy in for surgery or shots or anything stressful, he talked her through the whole process (even when she was a baby), straightforwardly counted to three to warn her of each shot (since surprise shots are NEVER good), laughed with her when they were over, and chatted with the medical people so that she could see him being at ease with all these medical strangers.
Knowing that we had a lot of treatments ahead of us, we couldn’t afford for her to be anxious in the medical world. It made a difference; Addy loves going in for treatments, since each one is An Occasion: they’re fun, they’re social, and she gets to play with new toys. She loves doctors and nurses. She talks to patients and personnel. She knows that Everyone is There to Take Care of Her.
A few months ago we ran into her pediatrician, Dr. Steelman, (whom she has seen for each pre-op appointment for every laser surgery since she was 5 weeks old, along with all of her normal well-child visits since she was born) at a restaurant. Surprised and excited to bump into him, her eyes widened and the first words to tumble out of her mouth were: “UNCLE STEELMAN!” That’s how much affection she has for her doctor.
Your child’s watching you, ready to reflect whatever face you present. Have fun with this. Nurse offers you guys some stickers? AWESOME!! A popsicle? BEST DAY EVER!!
Port Wine… Sunburn?
Posted by Jennica
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.)
The Outcome
Posted by Jennica
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.