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…
Okay, kudos to the parents of a Starbucks barista who was working down in Indianapolis sometime between 2008 and 2010 (and may still be there) – you did it right. Not sure what you did, because I have no idea who you are, but I know you did parenting right.
Here’s the story: a few days after Addy was born back in 2008, my uncle from Indianapolis called to tell us that he had just been served by a Starbucks barista sporting a port wine stain like Addy’s, and that she was supremely outgoing, lovely and confident. Her parents, he said, had clearly raised her to be comfortable with herself, in spite of (or especially with?) the port wine stain painted on her face. Our family here in the Twin Cities cheered – then we could do that, too!
Randomly, two years later, my husband’s mother’s cousin (seriously) traveled through Indianapolis, stopped at a Starbucks, and saw a lovely barista with a booming personality and a distinct port wine stain, who clearly loved herself and her face. Cousin was so impressed, she just had to tell our family. And we cheered again.
So, well done, Starbucks barista – your beautiful personality and confidence in yourself have inspired our family. And kudos to your parents, whoever they are, for whatever they did to raise you well. You’re lovely and you know it. Keep it up.
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!!
Addy receives laser treatments on her port wine stain at Children’s Hospital. She underwent her first treatment at 5 weeks old; now, she’s had about thirty. (I lost count somewhere in the mid-20s.)
I can go into more detail about these procedures later, in case other parents are interested; for now, I just want to use this post here to say thanks to Children’s hospital; even after 30-some trips there, we (especially Addy) still look forward to going in each time.
– At Addy’s last surgery, they removed a (very, very) loose tooth while she was under anesthesia, so that it wouldn’t suddenly fall out during the procedure and become an airway risk. So… the awesome Dr. Zelickson sent her back post-op with a pink box holding the tooth and some tooth-fairy money. (Including a $1,000,000 bill.) 🙂
– The staff in the surgery area know us so well that they helped come up with baby names for little Eloise when I was pregnant, they ask where her little brother is if I leave him with a babysitter, they bring Addy’s favorite toys before she even has to ask, and they remember that her favorite flavor for the anesthesia mask is pink bubblegum. I know they see a ton of patients, so the fact that they’ve gotten to know and remember Addy makes her mama feel good.
– This one may be obvious, but it’s worth pointing out: these folks know kids. They know them, they understand them, and they treat them as their own species, and not as small adults. Their physical needs and risks are completely different than adults’, and they carry the potential to develop a lifelong fear of medicine with a single bad experience. No pressure, right? And even after all her trips, Addy still loves doctors, nurses, techs, and anyone in scrubs.
– Through “Dream Night,” Children’s invited us, along with other kids (& their families) to spend an evening at the Minnesota zoo: free zoo pass, dinner, stuffed animal, access after closing time, and all sorts of fun, with other families from Children’s, Gillette’s and other hospitals. Needless to say, it was awesome.
So, thank you, Children’s Hospital (and all patrons, donors and supporters) for taking such good care of us. Even after 30-odd trips, Addy’s already asking me when we get to go in for another treatment.
I almost forgot the follow-up!
After the brief Q&A with the neighbor girl (prior blog post), we got back to our house and I made a point of openly talking about the encounter to Daddy, in front of Adelaide.
I said, “By the way, Daddy, the neighbor asked about Addy’s port wine stain!” “Really? [Happily, like I just gave him good news.] And what did she say?” Addy piped up: “I said it was my port wine stain from Dr. Zelickson.” “That’s wonderful, Addy! It’s cool that she was curious about it.” To which Addy nodded slowly, processing, then agreed happily: “Yes, it is!”
Why debrief? Because I want Addy 1) to know it’s fair game for open conversation – something she can bring up casually with us, 2) to get into the habit of debriefing us after those little conversations (keeping us in the loop when any negative ones come up), and 3) to put a positive spin on it.
Did I want to? No. I feel awkward talking about it, honestly. But I don’t want to spread that feeling to Addy. So it took some effort to bring it up, but I’m glad we did. Just seeing her absorb Daddy’s enthusiasm was worth it. 🙂
(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.”
Today Addy went to preschool with her face bruised from Monday’s surgery. It’s been six months since her last treatment, so we were a little concerned that she’d be more sensitive to her classmates’ stares/questions/comments (if they said anything at all) than she was last time. So Keith had a little pep talk with her this morning right before we raced out of the house (we were running late):
Keith: “Sweetie, you know how you had your laser treatment on Monday?”
Keith: “And you know how it makes your face look… different… than it usually does?”
Keith: “Well, your classmates aren’t used to seeing it like this, so they might wonder why, and they might ask you.”
… Noticing that each answer was increasingly distant or forlorn, he thought she might be worried about her face, so he delayed our departure by another minute to find out:
Keith: “Honey, are you sad?”
Keith: “Okay… Do you want to tell me about it?”
Addy: “I’m disappointed.”
Keith: “All right. And why are you feeling disappointed?”
She looked at him with a “duh” expression: “Because I want to go to preschool. Right now.”
So much for a pep talk. 🙂
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…
Okay, I chickened out.
I was going to talk to Addy about her stain, in order to preempt any comments from the other kids at preschool. (“Why is your face pink?” “What’s on your face?”) But, when I’ve seen her get questions in the past, she has generally just looked blankly at the interrogator and kept playing… so I figured I’d just see if we could keep that ‘blissfully ignorant’ stage going for a while longer.
As far as I can tell, she hasn’t received any comments or questions at preschool – yet. But she had a laser treatment on Monday, so the stain is looking mottled and dark purple. (When the laser kills blood vessels, they get temporarily darker, leaving the stain noticeably darker and bruised for a few days.) She’ll probably get questions today.
So, last night we decided to put it on her radar, and Keith had a “big-girl talk” with her at dinner. “Addy, you know how you had a laser surgery on Monday?” [she nods enthusiastically – she really likes her hospital visits] “Well, you know how your port wine stain is darker now? Like where it’s usually pink, and now it’s more purple?” [she nods blankly…like, what pink?]
So they go to the bathroom, where he holds her in front of the mirror. “See, Addy? You know how normally your port wine stain is a little bit pink? What color is it now?” She lights up like a Christmas tree: “PURPLE!!”
I had forgotten… purple is her second-favorite color. “And, and, and, my nose is PINK!” Pink is her absolute favorite color, ever.
“So you know the other kids at preschool? They – ” “They don’t have purple.” (She says it with sympathy. Poor kids.) “Well, they might ask you why you have purple. Do you know what you’ll say?” “It’s from my laser surgery with doctor Zelickson.”
Okay, so the kid’s picked up more than we’ve given her credit for. She knows and understands that the laser treatments lead to some bruising (about as much as a 3-year old can, I guess), and she knows that other kids don’t get the privilege of sporting pink noses or purple cheeks.
Can’t argue with that, I guess. We’ll see how it goes today; I’ll probably linger over the drop-off, just to watch the other kids’ first impressions, and to see if I can overhear any questions and watch her respond. Given her ‘big-girl talk’ with Daddy last night, I’m not too concerned… just really curious!