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For Parents: How To Encounter Humans, Part 2 (of 2)

Last week, I shared a few embarrassing moments that have taught me respond with grace when people comment on my daughter’s face, even when they seem ‘ignorant’ at first glance.

“Is that a hemangioma?”

“What happened to her face?”

“What do they call that?”

I’ve learned over the years that the very people who are asking often know more than I do, or they wouldn’t be interacting at all.  Because of this, I welcome their questions.

 

But if they don’t? And they still remark on the stain?

“Oh, that’ll go away!”

“Wow, didja slap her?”

“Get some sunscreen on that baby, she’s burning!”

 

Yes, that will happen. And it’s totally okay.

You’ll want to feel indignant, you’ll want to reply with sass, you’ll want correct their manners… but: it is so, so much better to extend grace. Because it will keep you sane, and, really, the world needs a little less sass and a lot more grace.

 

But grace isn’t always easy.

So, to help, let me offer what we’ve found to be the typical sources of all those questions and comments.  Because in our experience (over a decade now), we’ve noticed that there are a few consistent reasons why people comment or ask about our child’s face.

This list I’m giving you may not be comprehensive, but these are the most common reasons that will pop up again and again, driving people to remark or inquire.  Remembering these will save your sanity when you get a comment or question from a stranger:

 

Reason #1

They comment because: They’re human.

I know, it’s a broad category to start with, but hear me out.

You know what a totally natural part of being human is? Awkwardness. We’re awkward. We’re imperfect; we make mistakes, all day, every day. No true conversation is scripted or rehearsed; it’s impromptu. It’s messy, it’s full of awkward missteps and blurtings-out that make you want to put your head in your hands and hide. But it’s Life Among Humans, and it’s all we have to work with if we want genuine interaction.

The inquiries, comments, and tips you’re getting may be awkward, but they’re spoken, open and honest. If awkwardness is the price of genuine human interaction, I’ll take it.

 

Reason #2

They comment because: They’re concerned.

Probably half of the inquiries, comments, and tips we’ve gotten, especially from young children, have been due to genuine concern that she was in pain.

When they bring it up, what they mean is: “Was she burned??” “Does it hurt??” “Is that a sunburn??” This is a blessing, and reminds us that the world hasn’t yet gone to hell in a handbasket. Thank them and the Good Lord for their unnecessary concern over your offspring.

 

Reason #3

They comment because: They’re curious.

This is not a bad thing! As humans, we’re wired to look at the world around us, take it in, assess it, and survive together. We want to know each other’s stories; we want to know what happened and why. We want to know each other. This is a good thing!

When we see a Different Human, we’re naturally curious: Why is he in a wheelchair? What is his Story? Why is she missing an arm? What is her Story?

Curiosity is good. It’s a cousin to Concern, above. Let them build empathy.

How did you become like that? Was it hard? Did it hurt? Did you fight the dragon and win? What’s your Story?

 

Reason #4

They comment because: They’re a cognitively or behaviorally challenged adult who looks normal on the outside but is in fact operating at a child’s maturity level.

Autism, closed head injuries, and other disorders look normal, but come out as socially ‘awkward’. These people may be totally blunt, and may even seem rude. If an otherwise normal-looking guy is mopping the floor and makes a weird comment on your child’s face, he may have had a motorcycle accident 20 years ago, and that’s why he’s mopping floors. Give him grace.

If you pay attention to exactly who is saying the seemingly ‘rude’ things regarding your child’s face, you’ll notice that a higher proportion of them seem more socially awkward than their outer appearance might otherwise command. They may have a cognitive or behavioral issue, and deserve your politeness as much as anyone with more developed social graces.

 

Reason #5

They comment because: They’re mean-spirited and enjoy making you feel bad.

We’ve had…one…maybe two, I think, in Addy’s first decade of life. With rates like that, they’re easy to shrug off.

As your child grows, you can teach her both pity and concern for the poor souls who have such a miserable life that they treat others miserably.  Teach her how to keep them at arm’s length, but kindly.  Pray for them together, and I don’t mean in a patronizing way – truly plant seeds of concern in her heart for their misery, and she’ll learn to let their miserable comments roll off her back with wisdom beyond her years.  The mean child might be the girl who hears she’s ugly from her own parents; it might be the boy who’s been bullied as long as he can remember; it might be the spoiled brat whose lazy parents ensure his imminent failure in adulthood. In any case, they deserve our grace, not our fire.

 

Reason #6

They comment because: They know someone who “had one just like it!” Listen for these carefully; as you can tell with my own humble experiences, they don’t always start out sounding wise & experienced; they usually start out quiet & awkward (because, you know, humans). These encounters are as valuable as gold – learn all you can from them, for these folks know what it’s like to be in your shoes.

 

In my experience, just about every comment & inquiry you’ll receive will fall into one of these 6 categories, with most being good-hearted & awkward attempts at conversation.

It might be the old lady at the checkout line making Awkward Human Conversation by commenting, “Boy, you need to use more sunscreen on that baby’s face!” because she doesn’t know what else to say, and in the seven years since her husband’s death, she hasn’t gotten out much and is starved for Human interaction and is lobbing what she can over the conversation ‘net’.

It might be the normal-looking guy mopping floors who ‘rudely’ asks, “Woah, didja slap her?” because, in his childlike mind, it’s a funny thing to joke.

It might be the mom just a bit older than you, giving your child those sidelong, judgy-looking glances that you hate so much, who’s really just glancing over discreetly to see if it’s the same thing her own daughter has, wishing she could strike up a conversation about it if she weren’t so introverted.

 

Grace, grace, and more grace. We taught Addy early on to take every interaction openly and with a smile; “Yes, that’s my port wine stain! I just had a laser surgery.” It’s not a secret, it’s not shameful; it is a fact, and we’re okay with it.

When an adult tells me, “Oh, my son had a hemangioma like that, and it went away,” my exhaustion could easily respond with: “For the millionth time, this is NOT a HEMANGIOMA and it WILL NOT go away on its own!” But instead I reply: “Oh, that’s awesome! This will go away, too, but only with laser surgeries.” There: I’ve affirmed their kind attempt at conversation (probably meant to encourage me), and I’ve responded with warmth and truth.

 

So. When I’m out in public with my kiddo, when she gets some stares, when I hear the old: “Wow, what a sunburn!”, my indignant Mommyhood could easily respond with: “So help me, for the LAST time, this is NOT A SUNBURN, it’s a birthmark, and it WILL NOT HEAL, and not only will it not heal, but she’s had FORTY-THREE – did you hear that, FORTY-THREE! – laser surgeries to try to zap it off AND IT’S STILL THERE. NO! IT IS NOT A SUNBURN!”

But I’ve trained myself to observe who is making the sunburn comment. It’s an awkward cashier — the old lady starved for conversation. It’s an awkward guy mopping the gas station floor, too awkward to be cognitively healthy. It’s a bank teller who has to make conversation because her computer is processing too slowly, and it’s a fine opening attempt.

So instead, I smile and with a quick laugh say, “Actually, it’s a port wine stain, but it totally looks like a sunburn! We get that a lot.” And then either the conversation is done (transaction over), or they want to know more (inquisitive Humans), and I oblige.

After all, they’re taking time out of their day to learn about my offspring, and what mother doesn’t want to talk about her perfect & precocious offspring?

I’m grateful that they lobbed an attempt over the conversation net. I’m grateful that they’re open enough to the world around them to look at other humans. And more than anything, I’m grateful for their ever-human curiosity and concern over a child they didn’t have to notice. To me, all of their comments and questions are beautiful things.

 

Our Influence

A while back, I wrote of two encounters: a port-wined-stained girl hiding in her hoodie, and a confidently lovely Starbucks barista.

These two encounters have always reminded me and Keith that our influence matters as we guide Addy through her identity with a port wine stain.  Because Addy could end up like either girl.

Knowing that we wield considerable power when it comes to this mark, we want to parent it right.

Are there factors other than parenting?  Certainly – the Hoodie girl might have had crueler classmates in school, been subject to more relentless teasing and bullying, or experienced some other heartbreak entirely.  The Starbucks barista might have skipped through life among daises and kittens.  I don’t know the whole story.

I simply know that we, as parents, face the challenge of using our influence to build Addy up.  To be frank and honest with her, to build her self-esteem, to prepare her for a world full of flawed, and sometimes cruel, humans.

But really (and this is what intrigues me)… isn’t that what every parent faces?  These challenges are universal among parents who want to launch a confident, well-adjusted and healthy-self-esteemed child into the world, while protecting them from its cruelty in the meantime.

Not every child is born with an obvious malformation on their face, but the challenge still rests quietly on the parents’ shoulders to wield their influence wisely, simultaneously shielding and empowering, striking the right balance between shelter and exposure.

It’s not something we want to get wrong.  Someday, it may mean the difference between a confident smile and a tucked-up hoodie.

I’ve thought through parenting tactics inside and out, backward and forward, in an effort to empower my lovely daughter, with a Thing on her Face, to face the world confidently.  That hoodie terrifies me.

And I’m glad to share my insights here.  Many of my loyal readers are themselves parents of uniquely marked children, and they’re afraid of the same things I am.

But I also realize that many readers here are simply parents… and because you’re parents, you, too, face these very same fears.  And so I hope my insights encourage you, too.  Your path is no less precarious than ours; I’ve just had more occasion than most to sit down and think through these things.

May we encourage each other to raise children who confidently know their own beauty, whether they’re birthmarked or not.

 

You’ll Be Okay

 

 

Congratulations!  You have welcomed a new baby into this world.  You are excited, happy, terrified, uncertain.

And that baby looks nothing like what you expected.

If you, too, have been surprised by your perfect newborn’s unexpected face, I can perhaps offer some insight into the things you’re worrying and wondering about.

You already knew that you’d have to navigate the challenges of raising a child in this complicated modern world, but you weren’t prepared to do it with a strange-looking face.

You may be torn between calling your perfect little infant “perfect” and wondering what to do about this looming flaw.  Should you call it a flaw?  Will she think she’s not perfect?  Should you mention it to her at all?

You will Google this condition, and when you see all the ways these errant blood vessels can invade the brain, the eyes, the nose, and the gums, you will start watching for every daily milestone to make sure all systems are working the way they should.  At least, for now; those vessels will keep growing.

You will feel guilt at your concern over your baby’s face while other parents are dealing with issues so much more deep, painful, and immediate than this ‘cosmetic’ issue; yet, when someone else tells you to be thankful that you have “only a cosmetic issue” to deal with (and maybe even that “it’ll go away”), you’ll want to cry.

You will worry over every contact sport, every scratch, and every nosebleed, along with her eyes, gums, tongue, teeth, brain, and anything else these overgrown blood vessels touch.

And then, you will wonder what you’ll eventually say to her.  How will you talk to her about it?  And it will feel a lot like vanity, worrying about her looks, and surely, you’ve never been this vain before…

When it comes to her looks, you will struggle in the balance between truths – the truths that other people tell you, and the truths you discover for yourself.

People will tell you your baby is beautiful, and that’s true.  They will tell you that your child will be absolutely fine sporting a birthmark in our enlightened modern era, and that’s true.  They will tell you that beauty is so much deeper than skin, and that’s true.  They will even tell you that people hardly notice it after they meet your child, and that’s true, too.

But it’s also true that the uniqueness of each birthmark means that your child may never see another human being like them, and that’s isolating.  It’s also true that your decision to treat, eliminate, remove, or otherwise ‘fix’ this error will haunt your parenting conscience whether you choose to leave it or not, and that’s sobering.   It’s also true that our human instinct to spot aberrations in nature means that your child’s errant face will never not be spotted, and that’s overwhelming.

It’s a worrisome thing to raise a child with a strange face.  It’s okay that you’re dealing with those worries; it doesn’t make you a shallow person.  And you may not feel validated when people encourage you with all the truths about how cool it is to have a birthmark now; they’re not wrong; it just doesn’t feel validating.  That’s okay, too.  Take their encouragement; consume the truth they’re giving you.

You will think ahead to the first day of preschool, and the first day of kindergarten, and all the other firsts that she will walk into.  How will she carry herself into the room?  What will she say?

You will find yourself noticing all the unique features in other humans now.  And every time you see another human with a Thing on their Face, you’ll devour every hint that might give you clues to your own daughter’s future, all the way down to the way that one birthmarked guy orders his ice cream, and the way that one birthmarked girl slouches into her hoodie.   Ashamed?  Is that what your perfect, brilliant, precocious infant daughter will become?

People can assuage you all they want, but let me tell you, when you think ahead to all the things you have to prepare a daughter for these days, and then plan on having a weird face on top of it, it’s overwhelming.

You may not know what to do with all the overwhelmingness.  You may be quick to feel indignance: How dare Disney not have a princess that looks like my daughter?  You may be quick to feel offense: How dare that ignorant idiot ask my daughter what’s on her face?

Take a deep breath; be patient with all the other flawed humans around you.  They may not validate your concerns; they may not accommodate your daughter’s face, or even anticipate it.  They may ask loud questions.  That’s okay.

Have grace for other humans; give them room to err, because they’re imperfect, too.

Have a sense of humor; dress your baby up as a Dalmatian puppy on Halloween and call her ‘Spot’, because you only live once.

We’re reluctant to embrace vanity, but when we’re honest, we would admit that we desperately want to conform, we want to look “like”, and we want to be seen as pretty.  This is our vanity, and we feel guilty for it, and a facial mark rocks that guilt.  It may feel better to preemptively blame other humans for not accommodating your daughter in their princess lineup, but I think it’s healthier to admit that a natural dose of vanity comes with being human.  It doesn’t make you a bad person.

It’s okay to worry about all of this, and then it’s okay to let it all go and take “Spot” trick-or-treating.

Parenting is always uncharted territory.  Every child is unique, and every day is new.  I can give you advice, I can tell you what we’ve learned; but, ultimately, you will make your own path.  I’ve walked some of your steps, but not all of them.

And as I learn from each of our steps, I will continue sharing what we’ve learned with you, here.  But in the meantime, please know that I’ve felt what you’re feeling, and I can tell you, after more than a decade of parenting a Kid with a Thing on her Face, that it’s all okay.

Addy may not remember being dressed up as a Dalmatian puppy named ‘Spot’, but she thinks the pictures are hilarious.  She’s fine.  It’s all good.

You’ll be fine, too.

Medical Comfort

Addy-IV

For Addy’s first few years of life, she lived by a cycle of monthly laser surgeries: she was at Children’s Hospital for a new surgery every month; three weeks later, she’d go to the clinic for a pre-op checkup, then go back to the hospital for another surgery the following week.  Three weeks later, another pre-op, then another surgery; then another pre-op, and another surgery… you get the cycle.

The surgeries are minor, thank goodness, but many.  She’s had 43 laser treatments (so far) under anesthesia beginning at 5 weeks of age, each one variously bringing IVs, yucky-tasting drugs, and masks covering her face, and each one preceded by a pre-op appointment with a clinic doctor the week before.

Every medical encounter, with all its variables, carried the risk that Something might happen to turn her off from medical appointments.  Shots, exams, drugs, questions, strange surroundings, weird lights, being transported in a moving bed – all of these things can be painful or disorienting, and the likelihood that Addy might end up hating all things medical was always high.

Yet you’ve probably noticed (here, here, and here) that for Adelaide and her Port Wine Stain, medical settings are happy places.

So how did she arrive at her love of all things medical?  Why is she so comfortable as a patient?  I hope that for any parent reading this who has a child requiring a minor (if frequent) medical procedure, our insights here might help smooth the experience.

 

It comes down, broadly, to two things:

1) medical providers who understand children, and

2) some very intentional parenting at every single appointment.

 

First, those providers:

Seek out children’s medicine if at all possible.  All of Addy’s surgeries have taken place at a Children’s Hospital, where every single worker is oriented to children, not just as smaller versions of adults (which they’re not), but as their own species.  Their bodies are different.  Their brains are different.  One can’t always explain things to a kid, one usually can’t reason with a kid, and one forgets what frightens a kid’s brain, but at Children’s, all these things are on the radar of every nurse, receptionist, doctor, assistant, and specialist.  That’s not to say that they’re all perfect all the time, but it’s a great place to start.

Outside of Children’s Hospital, our other providers ‘get’ kids, too.  Her primary care doctor is a pediatrician.  Her dermatologist, while not a pediatrician, is a laser expert who specifically treats children with port wine stains.  Her ophthalmologist is a pediatric ophthalmologist (glaucoma is one of the possible complications from a port wine stain), and I can’t imagine trying to do that long, strange appointment with anyone other than a children’s eye doctor.

At these appointments, we’re just as likely to be asked about favorite cartoons as we are about recent colds.  The pediatrician doesn’t just look in her ears at a checkup, he ‘looks for’ Disney princesses or Marvel characters.  The ophthalmologist speaks more to Addy during her eye check than to me, and that’s perfectly fine.

With so many opportunities for bad experiences, taking your child to a provider that understands children is a great place to start.

 

The second major factor: the parenting.

If you want (or need) your child to be comfortable in medical settings, then you need to intentionally parent through every medical encounter, even the small ones.  You’ve seen some of my specific tips before, but this provides some wider context.

Always, always, remember this: You are the parent.  You run the show. Therefore, when you take your child into any medical setting, here are 5 things I want you to keep in mind:

 

  1. Choose your attitude wisely, for your child will absorb it and then reflect it. Be positive. 

When you visit a Children’s hospital a lot, you pick up on certain patterns, like this one: no matter the personality of the child, they’ll always end up reflecting their parents in the waiting room.

Pre-procedure parents are either Relaxed & Happy, or they’re Nervous About What’s Coming (complete with pursed lips and bulging neck veins).  They’re either smiling with their child, or tensing up like a guitar string about to snap.

Can you guess what happens to the child in those few minutes in the waiting area?

Within moments, they absorb the signals emanating from their parent, and then they unconsciously match them.  Happy parents?  Happy kid keeps playing.  Tense parents?  Kid does a double-take at the awesome toys in front of him, decides that maybe there’s something sinister about them, gets really quiet, goes over to Mom & Dad, and sits quietly, whining occasionally.

When it comes to your child in medical settings, remember that YOU set the tone.  You are the sky, and your child is the lake.  If you’re sunny and bright, then the water shines brightly, too; if you’re cloud-covered and gloomy, then the water is grey and cloudy, too.

You carry immense responsibility.  Your child will reflect you.  If you want them to come out of a clinic appointment happy, then you can’t walk in like you’re about to get that awful shot you got back in 1998.  If you want this surgery to not be a negative experience, then you can’t walk into the hospital looking like you’re on your way to a funeral.   If you want your child to comfortable in medical settings, then you must first be comfortable here.

And if you have to fake it ‘til you make it, then fake it, because your little copycat is taking their cue to be either happy or terrified from you.  Don’t lie about anything (more on that below); just make sure that their starting point isn’t “terror”.

 

  1. Remember your child’s natural ignorance.

Look around the hospital or examination room at all the strange objects from a kid’s perspective: you may be familiar with the blood pressure cuff, but your child is not.  For all he knows, it’s a torture device.   Preempt his fears by telling him what everything is.  Explain, explain, explain, and always with a positive attitude.  Good nurses and assistants are great at this; when one of them takes Addy’s blood pressure, they first hold the cuff up and say, “Do you know what this does?” with big smile and an air of intrigue, piquing the child’s curiosity.  “It’s going to give your arm a tight hug.”

There.  Done.  The strange object has been acknowledged and explained, just enough to reassure the child that it won’t be used for anything sinister.  Can you imagine trying to get a blood pressure reading without doing that first?  The poor kid has this thing strapped on his arm, there’s a buzzing sound, and then all of a sudden it cinches tighter and tighter and tighter and he’s wondering, “Where are we going with this?  Give me back my arm!”

Now, this ignorance comes with a bonus: Kids aren’t born knowing that medical stuff is bad.  That’s the burden we adults carry because we’ve visited hospitals when loved ones are at death’s door, when accidents change our lives forever, when babies are born dangerously early.  We understand life and death, and we know that the treatment can hurt more than the disease; if we had to check ourselves in today, we’d probably freak out.  So we expect the same trepidation from our children.

But to your child, all of this is new.  And a child is accustomed to encountering new things every day; that’s part of being a young human.  They’re constantly facing unfamiliar people and experiences and objects, whether at the grocery store or the hospital.  There’s no need for any of it to be negative at the start, so don’t heap that upon them.  They’re starting fresh.

Marvel at the blood pressure cuff with them – isn’t that cool how it works?  Handle the mask together and laugh about how it looks on your face.  Explain what these things do.  Mysterious unknown objects can be scary; familiar everyday objects aren’t.  Get a ‘play doctor’ kit with a stethoscope and blood-pressure cuff.  Ask the hospital if you can take home a mask so you can play ‘surgery’ at home and have a blast.  Let them be curious, help them explore, and keep everything positive.

 

  1. No surprises. Ever.

Some people want to distract a child so they don’t see a shot coming, and then they sneak it in, thinking that it makes the overall experience shorter and easier.  Trust me, that only works once.  The child cannot logically process, “Well, gee, that was SO much more efficient.”  All they know is, “OWW!! What?!?!”, and they will never, ever, ever again trust that stranger in the white coat, or even you in that environment.  Which means that the next time you carry them into a clinic or hospital, they’ll be inconsolable.

When I was a child, I was a patient in a hospital that wasn’t a children’s hospital.  No one there knew how to handle kids, and they administered shots by the ‘distract & surprise’ method.  It didn’t take long for me to distrust every white-coated person I encountered thereafter; I even freaked out if I saw a white winter jacket outside the hospital.

Do not let anyone (nurse, tech, or doctor) surprise your child with something unpleasant.  Take an extra moment ahead of time to warn your child what’s coming.  Note the word, ‘moment’ – no need to linger on the idea, just a few extra seconds to clearly, openly, and (most important) matter-of-factly tell your child what’s coming.  (Remember, if you freak out, they’ll freak out.)

Keith was the master of this disclosure.  Knowing we had a long medical road ahead of us, he left nothing to chance, even seasonal flu shots and routine blood draws.  Whenever a procedure came, here’s how it would go down:

The tech would prepare the shot.

Keith would turn to little Addy and say:

  • “Sweetie, you’re going to get a shot now.” [tell ‘em what’s coming]
  • “It might hurt, and that’s okay.” [matter-of-fact warning, NEVER negative]
  • “We’ll count to three,” [a consistent system she can rely on each time]
  • “…she’ll poke you once, and then we’ll be all done.” [finite ending – the light at the end of the tunnel]

He’d nod to the tech; they’d gently anchor her and count to three together, and the tech would poke Addy on “three.”  Addy might cry for a moment, but Keith would immediately scoop her up and affirm her: “There, see?  All done!  All done, just like we told you.”  [Remind her that it went down exactly as you said; she can trust you.]

“Now, tell the nice lady ‘thank you’.”

That’s right, he made her politely thank every tech and nurse who took care of her, even those who administered shots.  An attitude of thanks may sound crazy, but for a little toddler, the effort of articulating polite words of gratitude provided enough of a distraction (after all, that’s a lot of work when you’re two) to get her mind off any lingering pain from the quick shot.  And it fended off any possible “poor me” wallowing that could creep in among her many medical visits, to acknowledge the role of all caregivers around her, even those stuck doing thankless tasks.

Sniff, sniff, “Tay too [thank you].”

And with that, the event is done.  Your child knows that you’re trustworthy, consistent, and dependable.  We haven’t been allowed to wallow.  The pain is disappearing.  What were we crying about again?  Now, go get a sticker, and the day is made.  (If we’ve gone under anesthesia, then go get a popsicle, and the whole WEEK is made.)

No surprises.  Medical procedures don’t have to be pleasant, but they definitely should not be a surprise.  Ever.

 

  1. Be your child’s activist when it comes to details of treatment.

Even in these great settings, we occasionally encountered providers who weren’t perfect.  One clinic nurse was so nervous around kids that she clumsily administered a “surprise” shot to the leg really hard, without giving Keith a chance to count Addy to three.  Bad idea.  Addy felt shocked & betrayed, it took Keith over an hour to calm her down, and the poor kid limped for a week.  Not a good thing when we were bringing her in for a medical appointment or procedure every 1-3 weeks.

Needless to say, we were more demanding of procedure thereafter.  We had a lot grace for the nice nurse’s nervousness (after all, no sweet soul actually wants to administer shots to children), but we did discreetly discuss the event with the clinic, and they were awesome.  They understood that we couldn’t afford to have Addy not trust us, and they helped ensure that all shots thereafter followed a trustworthy procedure.

Remember, again, you’re in control.  Your child takes their cue from you, and the providers take their cue from you; if you’re not comfortable with some aspect of treatment, they’ll probably work with you until there’s some resolution.  But they can’t read your mind, so speak up.  Be kind and courteous, and they’ll work with you.

 

  1. Empower your child to do things themselves

I was surprised one morning when a nurse at Children’s Hospital offered to let Addy take out her own IV after a surgery.  Taking out the IV has always been a nasty moment, mostly because of the adhesive sticking to the skin.  (The needle is nothing compared to that sticky hand-hair-grabbing tape!)  Addy was always apprehensive about getting the IV out.

But then the nurse showed Addy how to pull it out herself, and it turned that moment from one of apprehension to one of empowerment.  Addy learned exactly how the IV worked, where the line was, and how fast to pull off the tape.  Altogether, it made her feel awesome.  No more tears.

Expect great things of a kid, and they’ll rise to the occasion.  I’m grateful for that nurse’s wisdom; she knew Addy could handle the task herself, even if I didn’t.

Keep your eyes open for opportunities to let your child do things for themselves in medical settings; ask the provider if a task can be done or assisted by the patient herself.  The IV task has been rather empowering for Addy, and there might be others.  The providers can help you find ways to empower your child to do things themselves, especially if they’re used to working with children.

 

Yes, perhaps you’d rather be at a tropical beach than at yet another procedure, but honestly, it could be worse, and in the grand scheme, it’s really not so bad.  So enjoy the little stuff; get excited about stickers and pumped about popsicles, because then your kid will, too.  Savor the time with your child (and a good book during those precious quiet minutes when they’re under anesthesia).  Life is beautiful, this laser treatment stuff isn’t so bad, there’s a whole team of people taking care of your offspring.  And with luck, your offspring will realize that it’s all quite lovely, too.

 

**Post script:  I will never forget the evening we went out to dinner to celebrate Addy’s 5th birthday.  By chance, we ended up seated in a booth just behind Dr. Steelman, the pediatrician who has seen her through all of her medical ‘stuff’ since she was a newborn – and therefore a provider she could either love or loathe.  When Addy caught a glimpse of him out of the usual medical context, her face lit up like a Christmas tree and she stammered excitedly, “Uncle Steelman!”

Priceless.

 

Going in for a Laser Treatment

So, you’re going to bring your child in to get zapped! Congratulations. I always applaud treatment, because I know that some parents have struggled to get sufficient medical advice to understand that, no, this birthmark isn’t going away on its own, and will in fact only grow with the child. So treatment is an excellent step forward.

Let me walk you through a few points related to treatments, based on our own experiences. (Again, I’m a lay person, not a doctor, and this is anecdotal advice, but hey – that’s what the internet is for, right?)

1. Get it done under anesthesia.
There are doctors who treat port wine stains without general anesthesia. I think they’re crazy. Here’s why.

A few years ago, my son developed a little red-dot hematoma on his cheek. It, too, needed a laser treatment. Since it was so small, Dr. Z. (Addy’s dermatologist) told us to just come into his clinic, where he would do a quick zapping with a bit of topical anesthetic. That’s the normal practice for the fancy clients who want their unwanted capillaries zapped. It gave me a chance to see what’s usually done behind closed operating-room doors. So we went in, put on special sunglasses, and helped hold Clarence while the laser zapped him.

It was noisy! And powerful! Like lightning suddenly exploding: BZZZZ! BZZZZ! BZZZZ! Pause. Then again: BZZZZ! BZZZZ! BZZZZ! The impact to the skin is often described to us by adults as “being snapped by a rubber band over and over, a hundred times a second.” BZZZZ! I could see the impact on the skin.

We had to wait through a moment of silence, then: BZZZZ! Another moment of silence, then BZZZZ!

Clarence was a trooper, but he did cry a bit.

That was zapping just a tiny spot on his cheek. When we were all done, Dr. Z. looked at me and said, “Now you can see why we do port wine stains under anesthesia.” Yes, sir, INDEED, I can. The sheer acreage of a port wine stain demands it. These are not little varicose veins or spotty hematomas – they’re big and spacious, and need *gridwork*, not *spotwork*.

Why am I telling you this? So that you can feel confident in your provider’s choice to put your child under anesthesia. Some parents (and even some professionals, and definitely the coverage providers) feel uncomfortable putting children under anesthesia. They may quote a report that came out a few years ago vaguely linking multiple trips under anesthesia in a child’s first two years with later behavioral issues like ADD. But what usually isn’t addressed in those conversations is the fact that children who require multiple surgeries in their first two years of life might have complicated medical issues, and that it’s just as likely that the later behavioral issues are caused by the underlying medical condition, the effects of it, or simply growing up in a hospital, and not by any long-term effect of anesthesia. Port wine stain cases are unusual in that, in spite of the need for multiple surgeries, there usually isn’t a major underlying medical condition affecting development (except for Sturge-Weber Syndrome), so we really don’t have much to worry about.

Addy’s had forty-three trips under anesthesia, and she is (in my humble opinion), a well-adjusted genius.

I can’t recommend anesthesia heartily enough. Anesthesia takes what could be a difficult and stressful experience (“BZZZZ!”), and turns it into a glorified nap.

2. The Day Of Treatment
Let me repeat something from the last sentence above: from your child’s perspective, all she will experience is *a glorified nap*.

Parents, please remember that when you bring your child in for a laser treatment under anesthesia. There is no great terror here. You will be STRESSED BEYOND BELIEF. That’s okay, you’re her parent, you’re *supposed* to be stressed when your offspring is taken from you and given a gas to knock her out. Totally natural.

But when she comes in for an outpatient surgery, your child will experience something like this sequence of events, all of which are pretty harmless from her perspective:

  • Arrive at hospital. (There’s a colorful mural on a wall. Pretty!)
  • Check in; the nurse dotes on you by taking your height & weight and giving you hospital pajamas to change into. (What an AWESOME COLOR.)
  • You wait for the various doctors and nurses to come and pre-check you. (Which gives you time to PLAY WITH TOYS. )
  • Various doctors and nurses come to pre-check you. (Excellent opportunity to practice your pleases & thank-yous, and say your name & birthday a lot, while they smile at you. SO MUCH ATTENTION!)
  • They wheel you back to the room. (A RIDE! AWESOME!)
  • They put a mask on your face and help you sleep. (Zzzzzzzz)
  • You wake up from your nap.
  • You eat popsicles after your nap. BEST. DAY. EVER.

That’s pretty much it, from your child’s perspective.

Here’s the key: whether this is a positive or negative experience rests in your hands, parents. No matter how stressed you are, you must help your child see everything new in a positive light. You are the sky, she is the water, and she’ll reflect your attitude. Be sunny.

Think of a first ride on a rollercoaster – it could either be terrifying or exhilarating, and a child watches their parent’s reaction to help determine whether the New Thing is terrifying or exhilarating.

Help her enjoy her day by pointing out the pretty mural on the wall. Help her get excited about the hospital pajamas, no matter how ugly they are. Tell her to thank every nurse and tech and doctor who dotes on her, even if they’re just flatly doing their job. Point out how awesome it is that she gets to play with toys, even if she has the same ones at home. Act like the mask with the crazy gases is worth smiling about. When she wakes up, help her procure popsicles and be amazed together that she’s eating popsicles at that time of day, without even eating lunch, and make it sound like the best day ever.

Okay, so that’s her perspective. Now yours:

  • You’re gonna cry. Accept that, make peace with it, stash a tissue in your pocket, and be ready. They’re knocking your baby out. The tears come, whether you want them or not.
  • Your maternal instinct will DEMAND that you tackle the people wheeling away or putting a mask on your baby. “YOU TOUCH MY BABY, YOU DIE.” It comes up suddenly. It’s unexpected. And you were feeling so civilized today. To avoid getting arrested, suppress this instinct as much as you can. Good luck.
  • Allow yourself to glance at the other families, patients, anyone else you see. Pretty much every single one is fighting a harder battle. This helps keep you grounded & sane.

Addy has enjoyed something about every surgery. She looks forward to each one. She wants to go back to see Dr. Z. and all the wonderful people at Children’s who dote on her and give her toys to play with and popsicles.

Next week, I’ll share a bit more insight on how we got her to like medical procedures, because a lot of intentional parenting went into it. But in the meantime, let me share a few other things to keep in mind that will help your whole week go better.

3. A few final medical tips

  • In the days leading up to a surgery, play around with putting things in front of your mouth and your child’s, like an anesthesia mask. Make something out of a brown paper lunch bag if you have to – the point is to get her comfortable with something safe in front of her face. (Okay, here’s the obvious but necessary caveat: don’t use plastic bags or anything unsafe. Feel free to teach her the difference here.) Make it a trumpet; try breathing into it; play doctor. Play, play, play! Then, when an anesthesia mask is really put on her face, rather than freaking out (“Get that weird thing away from my face!”), she’ll recognize the game.
  • Listen to the anesthesiologist when they tell you what they plan to do. There are many variations of the anesthesia cocktail they could give her (with or without anti-nausea, with or without steroid, with or without amnesia); take notes here so that you can, over time, determine what cocktail works best. (For Addy, it’s no steroids, no amnesia drugs, but with something for pain and sometimes a little something extra to help her sleep longer.)
  • There’s an “anesthesia hangover” that lasts about 3-5 days. Your child might be weirdly more emotional than usual. More likely to break down and cry. Emotionally fragile. That’s just the anesthesia hangover, and it will pass. Warn her teachers, warn her caregivers, and warn yourself. She’s fine, just a little emotional. Give her grace.
  • You probably won’t experience this, but there’s such a thing as “emergent delirium”; this affects mostly 3- and 4-year-olds, and occurs when a child ‘wakes up’ and appears functional, but their brain is still anesthetized. This happened to Addy at age 3; she seemed to wake up, but was still weirdly fogged. The ‘disconnect’ between awake & asleep brings on some unexpected behavior. (In our case, massive tantrums.) If you see your child completely breaking down post-anesthesia, don’t worry; she’s probably just processing the rest of the anesthesia, and IT WILL PASS SOON. Suddenly, the clouds part, and the child is normal again. The nurses can help you navigate this if it happens, but again, it’s unlikely.

These laser surgeries are nothing. No scalpel, no stitches, no chemo, no major complications. And yet they’re a big deal; you’re watching your child get knocked out for a medical issue, and your Maternal Instinct will be aroused. (DOWN, Mama Bear!) Allow yourself to maintain the perspective that this is a light burden, and that it comes with the blessed opportunity to help our children navigate the modern world with lovely marks on their faces, and to endow them with depth of character early in their young lives.

But just, like, try not to punch the nurse. Okay? Okay.

Decisions…

.Sleeping Addy PWS

After Addy was born, Keith and I had to decide whether or not to pursue treatment for her port wine stain.

It’s odd – you have this beautiful baby girl, and you know she’s absolutely perfect, but there’s something you have to “fix.”

We were 90% certain we would treat the stain… In hindsight, I realize the only reason it wasn’t 100% was because we felt that, by treating it, we were acknowledging that it was a blemish.  And we didn’t want her to see it as a blemish.

But over time, I learned something rather profound: you can both call the error and call it beautiful.  An the fact is, the port wine stain is an error, a mistake that occurred in development; trying to label it anything else deviates from the truth.  But that doesn’t mean it’s not beautiful.

And once you wake up to that truth, you realize how much of this beautiful world is so, not in spite of, but because of the errors.  It’s the deviations from “perfect” that we find interesting, lovely, attractive.  A towering, twisting oak tree gnarled by age and storm; the jagged edges of a rock cleft by violent wind and ancient water; those tiny little pigment mutations sprinkled on the nose that we affectionately call “freckles”.  The tree, the rock, the skin… all deviate from their error-free Platonic ideal, and yet all are more beautiful for those deviations.

So, we face the error honestly.  We zap the invasive blood vessels that have masked our daughter’s face from birth. And yet, every step of the way, we affirm not only her beauty in general, but the unique beauty of her face for the lovely error she she’s blessed to bear.

“In nature, nothing is perfect and everything is perfect. Trees can be contorted, bent in weird ways, and they’re still beautiful.”

— Alice Walker

 

Addy sleeping

Baby Addy Port Wine Stain beauty

Addy and Daddy

Siblings & Classmates

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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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The Best of Times, and the Worst of Times…

(That’s Addy trying to play it cool while telling me what she’s looking forward to at this surgery.  Before I pulled out my phone, she had been talking a million miles an hour, almost bouncing off the bed with enthusiasm.)

Addy had another laser surgery in January. She had looked forward to it for MONTHS. We try to do them every three months now that she’s older, but occasionally we have to push it back an extra month for scheduling conflicts, like this round. So with 4 months between surgeries here, she had an extra month to get excited about going into Children’s hospital.

“Mom! When do we go to the hospital?”
“Another 6 weeks, sweetie.”
“But I thought we were going sooooooner!”

“Mom! We go see Doctor Zelickson THIS MONTH!”

“Only 3 weeks until we go to Children’s!”

“I get to go see him in 2 weeks!”

“MOM! Only 1 week left!”

“GUESS WHAT!! Only 3 days until I see Doctor Zelickson!”

We came this close to making a paper chain like we do for countdowns to vacations.

This kid loves going to Children’s hospital for her laser surgeries. Her love of all things medical is the result of both some intentional parenting during her early procedures and the awesome folks at Children’s. (I’ll post more details about the parenting side later, in another post.)

Addy underwent her first laser surgery at 5 weeks old, and she’s had over 30 so far. She knows the faces of Doctor Zelickson, the nurses, the anesthesiologists, and the Child Life Specialists, and they all know her. She knows the routine by heart and looks forward to it each time.

Here’s the routine: We get to the hospital early in the morning and check in, where she chats up the receptionist. We wait in the waiting room for a few minutes until they call her name, then we follow them back to the pre-op ward. We stop in the hallway to check her weight and get her some hospital jammies. We settle into the pre-op room, she changes clothes and gets comfy on the hospital bed, and then the nurse starts the Q&A session (“Any loose teeth? Recent colds?”) while checking Addy’s blood pressure, etc. As an hour or so passes, we see a parade of people: the pre-op nurse, the pre-op nursing assistant, the Child Life Specialist (Geri, of whom you’ll see more later here), the nurse anesthetist, the anesthesiologist, and, of course, Dr. Zelickson. Everyone verifies what we’re doing (“laser surgery”) and where (“to the right side of the face”). Somewhere in that hour, either the nurse or Geri hooks Addy up with toys, even remembering from visit to visit which toys are Addy’s favorite (princesses, of course). Then, when it’s time for the procedure, they wheel her back to the Operating Room, and I give her a kiss while they drug her and then leave once she’s asleep so they can do the zapping. They wheel her back to the room within 20 minutes. (It’s a fast procedure.)

I should pause here to explain that in the past, we’ve had some trouble coming out of anesthesia. Addy was 3 or 4 when she experienced ‘emergent delerium’, which means that her body woke up before her brain. Anesthesia is steadily breathed out of the system, and if the body wakes up before it’s all out, the brain is still fogged, drugged, and weird. With Addy, this manifested first as weepiness, then quickly turned to an angry, inconsolable tantrum that lasted an hour. It was like being on the set of “The Exorcist.” It. Was. Miserable.

After that, I’ve always asked the anesthesia team to please keep her asleep as long as possible, to let her sleep off the drugs. At September’s surgery, they gave her Versed, which is a hilariously loopy drug that helped knock her out until her brain was de-fogged. Worked like a dream, and I got some very cute videos of a trippy Addy.

This time, we did the same thing. The nurse gave her Versed at 7:25a.m., and because Versed wipes out memory, he reminded me: “Her memory stopped at seven-fifteen.” Ok, cool, whatever.

Wrong.

When Versed wiped Addy’s memory, she lost the memory of seeing Dr. Zelickson, of being wheeled down to the O.R., and really, of most of the routine she had so intently looked forward to.

When she came out of anesthesia, she was confused and weepy and demanded that we do it all again! She cried because she didn’t believe us when we told her that we’d already done everything, and it was over now. “No, we haven’t! I haven’t seen Doctor Zelickson! You haven’t wheeled me down the hall yet! You need to wheel me down the hall!”

This is where Geri (the Child Life Specialist) comes in. As soon as the staff saw that Addy was distressed, Geri stepped up. Planted next to Addy’s bed, she calmly and clearly spoke to the confused little girl, firmly reiterating that yes, we’ve already done all of that, and then she reminded Addy of the yucky-tasting drug she took earlier, explained to her that it wipes out memory, asked Mommy to pull out the phone with which we’d taken a few pictures ahead of time (to show Addy evidence of the routine that did in fact take place), and explained to Addy in clear step-by-step terms that her big-girl brain doesn’t like being confused about sequence and routine, and that it’s okay to be a little stressed about it. She didn’t mince words, she held her ground when Addy insisted that we do it all again, she was kind, she was patient, she was empathetic, she was firm, she was clear, she was basically everything you’d want someone to be when they’re giving your kid a pep talk like this.

She helped catch Dr. Zelickson between procedures, so he could come back into Addy’s room and we could check that off Addy’s mental checklist (again). She even arranged for the two of us to wheel Addy’s bed down to an induction room (which looked like an O.R. but wasn’t in use) to fill in some of the routine ‘gaps’ in Addy’s brain. Check.

Can you see why I love going to a Children’s Hospital?  These people know their clientele.

When we were all done and Addy was ready to go, I took her down to the hospital cafeteria for a special breakfast, just the two of us. (A rare treat when you’re the eldest of 3 kids.) Her brain was de-fogged and she enjoyed herself.

All in all, I felt awful about wiping Addy’s memory of the experience that she had so wonderfully anticipated. She’s already counting down to the next one, and we’ve all agreed (me, Keith, Children’s staff, and especially Addy) that we’ll skip the Versed next time. Apparently, the risk of emergent delirium peaks around ages 3-4, so it’s less of a risk now anyway.

Each year of treating Addy’s port wine stain brings something different; we’ll see what Age 7 has in store for us.  (So far, it appears we’ll be dealing with a strange tear-drainage problem around the eye, but more on that later.)  Whatever it brings, I know that Addy’s in good hands at Children’s, and that we’ll figure it out together.

 

Having breakfast after Addy's latest laser treatment.

Having breakfast after Addy’s latest laser treatment.

Talking to Addy (part 2)

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In response to a dear reader’s inquiry, my last post discussed how we prepared Addy for the concept of having a huge dark-pink mark on her face; in this one, I tell how we actually talked about the port wine stain itself in more concrete terms.

As you’ve probably noticed in parenting, kids are oblivious to some things for an amazingly long time. For your child with a port wine stain, as long as she ignores it (or is oblivious to it), you can ignore it, too. You don’t want to force the topic and make it ‘An Issue’ before she’s ready. As I mentioned in my last post, only worry about laying the groundwork for her to believe that a distinguishing mark is a *good* thing.

But that oblivion doesn’t last forever, and at some point she notices it. She also becomes aware that all those comments from other kids and adults do, in fact, refer to her. She realizes that there’s something on her face, something others don’t have. This stage I found very, very tricky; you want to beat the world to the punch, you want to be the first voice she hears regarding her stain, her first impression and the last word. But you don’t want to make it ‘An Issue.’

So what do you say? Facts. This is the stage to be factual, neutral, and yet still calmly positive. Let her absorb the facts: That her face is pink (or purple). That it is a port wine stain. That she has a port wine stain. That Mommy does not have a port wine stain. Simple facts can be profound to a toddlers and preschoolers as they order their universe, so offer factual comments with a positive, contented attitude. The universe is in order; all is good.

If you catch her staring in the mirror at her port wine stain, offer a simple comment: “That’s your port wine stain.” Say it with quiet gladness, like you’re a garden-tour guide answering a question about local flora on a summer day: “That’s a purple lilac bush.” Pleasant, and neutral. Just a nice fact.

I found it helpful to focus on the words themselves: make this a language lesson. Toddlers are constantly learning how to speak and annunciate, and they’re thrilled with their accomplishment. “Can you say Port Wine Stain? Good! That’s right, po-oh-rr-t, make sure you say the ‘t’ there…” This accomplishes 4 things: 1) she knows it’s not a taboo topic, 2) you open the door to any questions that might be simmering in the back of her little mind that she keeps forgetting to ask you, 3) you’re empowering her to answer strangers’ questions for herself by speaking it clearly, and 4) there’s no pressure to Have A Talk about it. You’re just working on speech, that’s all. Happily.

After a surgery, she might stare longer at her reflection, observing the new shade of purple on her cheek. Sometimes just a solidly honest “You are so beautiful” is all she needs to hear; it’s enough to tell her that all is good with the world. “Yep, whew, I’m still beautiful, good, moving on.” Sometimes she’ll need a little more from you, as Addy did when she stared bug-eyed at the mirror at some especially intense post-surgery bruising: the reaction I used is the quietly-rolling “Oooooo!” that we adults use when we see an intriguingly lovely exotic fish in an aquarium: calm, admiring, hushed, and affirming yet neutral – “Ooooo, look at that amazing shade of blue.” “Ooooo, look at that, Dr. Zelickson really did a wonderful job with the laser surgery today.”

Then immediately start another language lesson: “Can you say, ‘laser surgery with doctor Zelickson’? That’s right – lay-zerr…” and so on, until she accomplishes the sentence. Then she’ll proudly show her accomplishment off by announcing “It my lay-zer zur-dur-ee wit doctuh Zeckickdon” to anyone who’ll listen. And when you see your daughter proudly (proudly!) telling others that her face is purple from a port wine stain treatment… it feels pretty awesome.

One last piece of advice I got from my mom: don’t call it a beauty mark. I called it that a few times when Addy was a toddler, in an attempt to soften the topic and make her feel good about it. As my mom pointed out, if I were to tell Addy that it was a beauty mark, I’d be setting her up for disappointment at the first reality check when a blunt playground kid impulsively responds: “No, it’s not.” Don’t attach beauty to its title. Call it what it is – a port wine stain. You can separately help her understand that her port wine stain is beautiful (as in my last post), but don’t tie its presence or absence to beauty. Just be factual and honest, with a pleasant demeanor every time. She’ll learn to accept the stain matter-of-factly, she’ll understand that it’s not a bad thing, and she’ll be equipped to face the world herself, big words and all.

Talking to Addy (part 1)

FacePainting

Back after a long hiatus!

In my last post (long ago), I responded to a dear reader’s question regarding what we tell others about the port wine stain. In this one, I’m belatedly following up to respond to the same reader’s question regarding what we tell Addy:

“…Any advice on how you talked to Adelaide about her PWS when she was Sylvie’s age [23 months]? Sylvie doesn’t notice it normally, but after this last treatment, she did touch her face when she looked in the mirror, so she notices that it looks “different.””

Ah, childhood oblivion; it’s a lovely thing.

As I was writing a response to this question, I found my answer to be getting ridiculously long, so I’m splitting it into two blog posts. Number 1 here is how we prepared Addy for the concept of having a huge dark-pink mark on her face; Number 2 will be how we actually talked about the port wine stain in more concrete terms when she was little. So if I seem vague here, or like I’m coming at the question from a 30,000-foot view, don’t worry – I’ll get more specific in my next post.

First, let’s cover the advice I won’t give you. When it comes to facing a blunt world with a unique face, other parents may empower their darling with the same indignance that soaks our culture. When Junior stares at the mirror confused, the parent crashes in with, “You’re PERFECT, don’t ever let ANYONE tell you otherwise.” Before Junior even sees a stranger doing a second take, Indignant Parent chimes in with, “ReMEMber, some people are just plain ignorant. Keep moving.”

I’m not that kind of parent. Indignation is great for making a sassy kid, but I don’t think it empowers them to be comfortable in their own skin. I’m a realist, and the reality is that you don’t need a sassy attitude to have positive encounters with other humans in the world; in fact, if anything, it hinders that goal.

My big-picture advice? Give your daughter a head start on feeling comfortable with her different, stained face. Start early, while she’s still mostly oblivious, and be subtle. We didn’t directly talk about the Port Wine Stain with Addy until she was in preschool, so in her early years I basically trained her to believe that having a different, marked, pink face is a good thing. Then I hoped that, when it finally dawned on her that *she* had a different, marked, pink face, it would be a happy and comfortable realization. So far, it’s worked.

To do this, send lots of little messages gradually, consistently, and frequently. You want to subtly convince her that port wine stains are awesome.

To begin with, I applied blush during my morning makeup routine when Addy was present. A lot of blush. Often. And I made sure to admire myself (think “exaggerated Hollywood starlet” kind of self-admiration) in the mirror. “Ooh, how lovely!” “Do you think that’s pink enough?” “I really want my cheeks to be nice and dark.” “Hm, I should make them pinker.” “Well, a classy lady needs nice pink cheeks!” And then I called in reinforcements: my mother, my mother-in-law, and the daycare lady each admired their pink-blushed cheeks in the mirror when Addy happened to be with them, applying rouge liberally and happily. “You can never have too much pink!”

(I know what some of you may be thinking – “What kind of message is she sending her daughter by relying on something as superficial and false as blush for beauty? True beauty should come from within!” That’s fine and dandy, but in our case, Mother Nature and Cultural Norms conspired together and slapped Addy with a big birthmark in the very color that women around the world aspire to have on their cheeks, so I’m pushing Addy to the front of the pack on this one. We all want pink cheeks? SHE WINS. And I’m not taking that away from her.)

So play up the pink-cheek thing; she might not realize yet that she herself has a super-pink cheek, but for now it’s adequate that she absorb the knowledge that it’s a very, very good thing to have.

Another thing we did was embrace face-painting at every single festival we attended. This one was harder for me at first; I don’t like anything touching my own face, and on top of that I’m a little nervous to have her port wine stain touched or pressured. But once I saw how happy she was to have her (other) cheek painted with elaborate girly unicorns and hearts and stars, I knew we could use this to our advantage.

So we made face-painting into this huge deal, this happy thing that happens at summer festivals. She looks forward to it throughout the year, and when those festivals come, we celebrate with painted faces. Because painted faces are awesome. Because it’s a desirable thing, a worthy thing, a beautiful thing to have SOMETHING on your FACE. And pick your words so that, again, she absorbs the knowledge that having a mark on her cheek can be a good thing: you don’t just say, “I’ll get my face painted, too!” -– you say, “I want something on my cheek, too!”

We also started using more wardrobe statement pieces for ourselves. I realized that my little toddler was watching everything I did down to dressing for the day. And the sweet little copycat would later go into my closet and stand in front of my mirror and mimic my actions, clomping around in my heels. So I decided to talk out loud while choosing an outfit: “Hm, I like this shirt… and I’ll wear these pants because they look nice…Very classy… But, hmm, I think I need to have something noticeable, something bright that will get people’s attention -– here, I’ll wear this!” And I’d grab one of my hundred brightly-colored accessory scarves and tie it around my neck, or my biggest, shiniest, cheapest earrings and secure them saying, “There, this will make people say ‘WOW!’”

I’m a conservative dresser; no one ever said “Wow!” But day after day I told the mirror (and my copycat) that I wanted something to catch peoples’ attention and set me apart, even if just for a moment. Some days it was a bright scarf, other days those big cheap earrings, and sometimes a lovely hat, because no one really wears hats and I said it would make me ‘stand out.’ (Likewise, my husband occasionally started wearing a nice hat, too, telling Addy that he wanted something to distinguish himself from other men that day.)

Her port wine stain never came up while we were dressing in front of that mirror. But now, when her port wine stain comes up in conversation and we mention that it’s ‘a little different’ from the other kids, her face lights up like she’s just won a beauty pageant. And when she was getting ready to go to preschool with a bruised face a couple years ago, she expressed sympathy that the other kids didn’t “get to have purple” on their face like she did.

Embrace distinguishing characteristics; if you wear glasses, then you can tell the mirror (and your copycat) proudly that “not everyone gets to wear glasses,” as if you’re lucky for standing out from the crowd. I showed her my little cross tattoo to prove that I had wanted something unique so badly that I actually employed needles to get it (and I hate needles). I bought face paints and let the kids have a blast painting their cheeks (and noses and foreheads and ears) crazy colors, because face color is fabulous and beautiful and fun and happy. When Addy whispers loudly that she sees a stranger with something different (“Mom LOOK! He’s missing a leg!”) I whisper back like we just saw a movie star (“WHAT?! No WAY!”).

With effort, luck, and time, you can help her know that distinguishing marks are awesome, and that pink cheeks are awesome, and that purple is even more awesome. With that knowledge in place, talking about the port wine stain itself will be easier. Instead of being defensive toward the world, she’ll be comfortable in it with her own unique skin, because she’ll know that unique is fabulous.

FacePaintingComplete

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