“Hi! I Have a Port Wine Stain.”
Posted by Jennica
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…)
The ‘Debriefing’
Posted by Jennica
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. đ
Addy’s Answer
Posted by Jennica
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. đ
“A Painting”
Posted by Jennica
(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.”
Posted in 3. Addy Stories & Experiences
Tags: Grace, Perspective, Port Wine Stain, Treatments
2nd Surgery during Preschool
Posted by Jennica
Today Addy went to preschool with her face bruised from Mondayâs surgery. Itâs been six months since her last treatment, so we were a little concerned that sheâd be more sensitive to her classmatesâ 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: âSweetie, you know how you had your laser treatment on Monday?â
Addy: âYeah.â
Keith: âAnd you know how it makes your face look⌠different⌠than it usually does?â
Addy: âYeah.â
Keith: âWell, your classmates arenât used to seeing it like this, so they might wonder why, and they might ask you.â
Addy: âYeah.â
⌠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: âHoney, are you sad?â
Addy: âYeah.â
Keith: âOkay⌠Do you want to tell me about it?â
Addy: âIâm disappointed.â
Keith: âAll right. And why are you feeling disappointed?â
She looked at him with a âduhâ expression: âBecause I want to go to preschool. Right now.â
So much for a pep talk. đ
The Tables Are TurnedâŚ
Posted by Jennica
I took my kids to the doctorâs 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 âMommy! Why that girl not have any arms?â I froze. She jabbed her arm out to clearly point: âRight there! Why she not have arms?â
Well, this was a completely new experience for me. Ever since Addy was born, weâve experienced staring kids, curious adults, and parentsâ awkward reactions when their kid asked them loudly âHEY! MOM! Why does that girl have a RED FACE?â 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. Itâs okay, weâre 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-oldâs 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 canât 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 âshush!!â (yeah, smooth), muttering something about needing to sit down and wait âvery, very quietlyâ 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, âItâs okay, she can ask me anything she wants. Iâm used to questions.â  [âPHEW!  So she doesnât hate us. Good.â] I smiled and thanked her. She continued, âI donât mind it when little kids ask me. Itâs the older ones who arenât nice.â
Hmmm. Maybe thatâs why Iâve never minded kidsâ questions; until recently, itâs usually just been the young ones who have noticed and asked about the stain. So before I label us as the âconfidently proud and matter-of-factâ modern parents I thought we were, I have to admit that weâve never really been the target of any malicious teasing. Maybe thereâs an inner âshaken and insecureâ parent waiting to emerge with the right prodding? Probably.
At least now I understand better why parents silently freak out at their kidsâ noisy observations â theyâre afraid theyâll be branded as terribly incompetent parents. And, like the graceful young girl in the waiting room, Iâll reassure them that itâs okay to ask. No, I donât think youâre backward or insensitive or a bad parent. Even the most hypersensitive, postmodern parents have curious three-year olds…
Taming Mother Bear
Posted by Jennica
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 canât tell kidsâ ages, so thatâs a guess; older than Addy, still quite a bit younger than tweens.) While we approached and were getting settled, one of the girls noticed Addyâs face, still quite bruised from laser surgery. The girl caught her friendâs 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 â that kind of âOhmygosh, did you SEE her outfit?â 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 Iâm 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 âself-controlâ over âmother bearâ:
1) The girlsâ parents were sitting right there, and would have noticed me. Darn it.
2) Addy was completely oblivious, so⌠if Iâm honest with myself, Iâll admit⌠no harm done there.
3) Thereâs a solid possibility that these were actually, truly, good girls. Girls who would never in a million years intend to hurt anyoneâs 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. Iâm not sure exactly what that means (like how nasty the normal ones can get), but at least they werenât running around hitting old ladies or laughing at people in wheelchairs. So, maybe I can give them some room to be curious.
I guess Iâm learning that itâs a lot easier to handle the questions with humor, than with graceâŚ
Posted in 3. Addy Stories & Experiences
Tags: Encounters, Grace, Parenting, Perspective
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 doesnât mind an entourage.) One little boy finally stood right in front of her, stopping her, and stared hard for a minute â then he raised his hand, pointed to her face and asked âWhatâs that?â
Instinctively, her hand flew up⌠to the pink barrette in her hair, and she enthusiastically responded with âOh, that to keep my hair out of the goop.â [Goop = post-laser ointment applied to cheek]
The boy just stared blankly. Addy tried again: âGOOPâ â saying it clearly, as if the poor kid didnât hear the first time). Another blank stare. âGOO-OOP!â Nothing. âGOO-OO-PUH!â
She finally gave up; clearly, he just wasnât getting it, so she went off to play.
Big-Girl Chat
Posted by Jennica
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. (âWhy is your face pink?â âWhatâs on your face?â) But, when Iâve seen her get questions in the past, she has generally just looked blankly at the interrogator and kept playing⌠so I figured Iâd just see if we could keep that âblissfully ignorantâ stage going for a while longer.
As far as I can tell, she hasnât received any comments or questions at preschool â 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.) Sheâll probably get questions today.
So, last night we decided to put it on her radar, and Keith had a âbig-girl talkâ with her at dinner. âAddy, you know how you had a laser surgery on Monday?â [she nods enthusiastically â she really likes her hospital visits] âWell, you know how your port wine stain is darker now? Like where itâs usually pink, and now itâs more purple?â [she nods blanklyâŚlike, what pink?]
So they go to the bathroom, where he holds her in front of the mirror. âSee, Addy? You know how normally your port wine stain is a little bit pink? What color is it now?â She lights up like a Christmas tree: âPURPLE!!â
I had forgotten⌠purple is her second-favorite color. âAnd, and, and, my nose is PINK!â Pink is her absolute favorite color, ever.
âSo you know the other kids at preschool? They â â âThey donât have purple.â (She says it with sympathy. Poor kids.) âWell, they might ask you why you have purple. Do you know what youâll say?â âItâs from my laser surgery with doctor Zelickson.â
Okay, so the kidâs picked up more than weâve 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 donât get the privilege of sporting pink noses or purple cheeks.
Canât argue with that, I guess. Weâll see how it goes today; Iâll probably linger over the drop-off, just to watch the other kidsâ first impressions, and to see if I can overhear any questions and watch her respond. Given her âbig-girl talkâ with Daddy last night, Iâm not too concerned⌠just really curious!
Preschool!
Posted by Jennica
Addy has officially started preschool! And aside from the normal mom-isms (“how did she grow up so fast?!”), I’m wondering: how should I handle her stain? She never seems to notice it; she never talks about it at home, she’s never asked us about it. She’s very matter-of-fact when it comes up indirectly (like putting cream on that side of her face after a treatment).
So… do I a) bring it up with her to pre-emptively deal with any potential classmates’ questions? Or b) do I stay mum and just wait for her to ask me?
I’m mildly concerned that if I say nothing, then I’m not preparing her well; after all, I don’t want her to be suddenly surprised by a barrage of questions without warning. (Fast-forward 15 years: “You threw me to the lions that day!”) On the other hand, if I do try to prepare her (like how? role-play? she’s 3…), then am I just planting seeds of worry, making a bigger deal of it than her classmates would?
When she started last Monday, I opted to stay mum.  And after two days of preschool (she only goes twice a week), she still seems happy and well-adjusted. Excellent. But… should I still bring it up? After all, aren’t parents supposed to be the first ones to talk to their kids about stuff? “When they offer drugs, just say no.” “When they ask about your face, just say __.” Or does that just give the kid fodder for discussions with their therapist in 20 years?
Jennica
What Happened To Her Face? 