Her Eye

I have some catching up to do here!

In August, Addy went in for her 38th laser surgery at Children’s Hospital to zap off her Port Wine Stain.  It was more complicated than usual: we added a minor eye procedure.

Addy’s port wine stain wraps around her right eye; all those blood vessels (which I compare to weeds) grow with her, building up and adding pressure to the surrounding tissues.  It’s for this reason that we have to check her for glaucoma every year — the blood vessels often add significant pressure to the eye itself, affecting eyesight.

In her case, she’s been cleared of of glaucoma (so far), but her right eye stopped draining tears.  Apparently, the port wine stain was squeezing the tissue around her tear duct drain, which runs from that little hole in your bottom eyelid down the nasal passages to rid your eye of all the tears it constantly produces throughout the day.

Addy’s drain had been squeezed shut by all the blood vessel ‘weeds’ growing around it.  The issue was diagnosed after we noticed that her right eye was always watery, to the point where random tears would run down her face when she wasn’t crying.

To fix the problem, her ophthalmologist (the same wonderful Dr. P. who has been checking her for glaucoma every year since babyhood) suggested that at Addy’s next surgery, as long as she was already under anesthesia, she would simply insert a tube that would stay in Addy’s drain, propping it open like a stent.  Then, about 3 months later, we would visit her clinic, and she would do a simple procedure to pull it out through the nose.

Easy enough.  Addy went into the surgery as excited as ever.  (This kid has the best attitude about medical procedures.)

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They marked her face with an arrow to indicate the correct eye to mess with (as if her port wine stain wasn’t obvious enough an indicator, but hey, I’m all for being careful):

However.  Turns out that the port wine stain complicated the issue a bit…

Dr. P. tried to thread the tube through the top tear duct first (for plumbing reasons I can’t explain).  Turns out Addy’s top duct was either missing or blocked by a granuloma she discovered there.  Which means we now needed to schedule a follow-up within the next two weeks, rather than 3 months…

So she went down that bottom drain instead.  She first threaded a ‘probe’ down the drain to open it up, ahead of the actual ‘tube’ that would remain in place.

The probe went in just fine; Dr. P. threaded it down, then pulled it out…  But in the few seconds it took to get the tubing ready, Addy’s drain completely closed off.  There was so much sudden inflammation (blood) that the tube would NOT go in.

Turns out all those crazy weed-like blood vessels of her port wine stain are deep inside, and the first probe irritated them.  (Helllooooo, bloody nose!)

So she had to apply something that they use to shrink blood vessels in the nose to get the inflammation down before the tube could go in.

She finally got the tube in place.   Addy went to a post-op recovery room to wake up slowly (my request, after some previous anesthesia adventures), and then was delivered to me groggy.

She felt much worse than normal.  The right side of her face hurt.  There were painkillers for the ‘owies’, but nothing to help the general discomfort of having been ‘messed with’.  A cold compress was applied.  She asked for low light, kept both eyes closed, and groped to put my hand on her face; the gentle pressure soothed her:

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While I usually use having ‘been in a bar fight’ as an apt description of her face after a laser surgery, she even had the swollen puffy-eye look going this time  after all was said and done:

And yes, I’ll admit to feeling a bit emotional at this procedure.  She had never needed me (or my hand) as much as she did this time.

As usual, I took my sweet time scheduling that follow-up appointment… and when I finally did, this was the catalyst:

Yep – the tube came out!

Aggghh!!  I’m freaked out by most medical issues (almost fainted getting my blood drawn; I honestly have no idea how I’ve brought three children into this world), but anything eye-related *especially* freaks me out.

I thought I might pass out when Addy, playing with other kids at a festival, stopped, pulled something out of her eye, then ran up to Daddy and presented The Tubing: “Dad, I think this came out of my eye!”

*faint*

I went ahead and scheduled that appointment.

Long story short, all good news.  The granuloma up top is nothing to worry about, and the fact that the tube slid out so easily means that it’s already done its work opening up that drain.  No need to put it back in.  Her tears are draining again.

Excellent.  Done.

Her eyes are fine.  Life is good.  And of the million things that could possibly worry parents, we are incredibly, ridiculously blessed to hold this one.  We can worry about the developmental effects of going under anesthesia so times in early childhood; we can worry about equipping our gorgeous daughter for a flawed world full of flawed humans who may see her error cruelly; we can worry about her perfect eyesight being blighted by a zealous overgrowth of errant blood vessels.  But not once do we have to worry about her death, disfigurement, dismemberment, or impairment from any of these things.

That’s what all those visits to Children’s Hospital give one (I’d hope) — perspective.  Of all the things that worry parents, I thank God in his gracious mercy for handing us this; it’s a beautifully light burden to carry.

That doesn’t mean I didn’t choke up in the recovery room there.  But how blessed I am that my parental instinct is piqued by something so slight that my daughter ends up looking like this at the end of such a long morning:

 



Blessed, indeed.

Not-so-Uniquely Flawed

In the seven years that I’ve been pondering unique marks and distinguishing characteristics since Addy’s birth, I’ve come to appreciate the simple yet profound truth: every human is unique.  And therefore beautiful.  And vulnerable.

Addy doesn’t hold a monopoly on being different.  She may have a more obvious imperfection than you, but you’ve also been singled out, felt embarrassed, tried to hide, and wanted desperately to blend in.

Haven’t we all?

Keith pointed out to me early in baby Addy’s life that a bully will find anything to bully – in other words, even if our daughter didn’t have a port wine stain, she could be made fun of for being short, or being tall, for being outgoing and happy, for wearing glasses, or even getting the highest score on a test in school.

We decided early to find the silver lining in baby Addy’s port wine stain: knowing that any child can (and will, at some point) be singled out & made fun of for some uniqueness, we’re intentionally grateful that our brilliant daughter has a mark on her face; we would prefer that life’s bullies fixate on something skin-deep (for which we can prepare her, as you’ve read on this blog here), rather than her intellect, joy, or exuberance (which are so deeply tied to her soul).

In other words, our journey isn’t unique.  And yet, it is.  Addy entered the world with a giant, attention-grabbing stain on her face, and even after almost 40 mark-lightening laser treatments, it still gets questions.  If a bully’s looking for something to single out, here it is.  We face the challenge of building her up to be simultaneously aware of and comfortable with her flaw, both humble and confident.  We must be honest with her, build her self-esteem, and prepare her for a world full of flawed, and sometimes cruel, humans.

But really… This is what every parent faces.  Your challenge, as much as mine, is to launch a confident, well-adjusted, healthy-self-esteemed child into the world, while protecting them from its cruelty in the meantime.   Not every child is born with an obvious splotch on their face, but every parent still shoulders the burden to guide wisely, and dances that line between shielding and exposing, protecting and empowering.

If we do our job well, Addy will know that she may be uniquely flawed, but that every other human around her is, too – and that they deserve the same grace and kindness from her that she might ever hope to receive from them.

Our Silver Lining

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The scariest kid-social-encounters moments I’ve encountered in parenting have had absolutely nothing to do with Addy’s face.

They’ve been at the playground, when Addy runs up to a small group of older girls, joyfully shouting “Will you play with me?”  My world stops: Will they turn their backs on my earnest big-hearted extrovert and break her little heart?  Or will they play?

They’ve been at festivals, when Addy finds other children dancing to the music, and jumps in to join them without invitation.  I watch intently: Will they look at her like she’s an alien and break her little heart?  Or will they dance with her?

They’ve been at school, when Addy comes to class wearing a uniform that’s older, more worn and ill-fitting than some of her classmates’.  Will they point the differences out?  Or will they be blissfully oblivious to their meaning – that we can’t afford a new set of uniforms, and had to sift through the secondhand bin?

Yes, I bring my own baggage to the table.  Addy may be outgoing, but I’m an introvert. I’m still intimidated by any group of children over the age of 3.  I’m an adult who wants to be a lot better-off financially than I am, and it kills me that Addy’s stuck with a wardrobe that is a window to our budget.

But none of these has anything to do with her face.  I’m almost relieved when it’s the reason a kid looks at her strangely at the playground.  I can’t handle the thought of her being rejected for her gracious, extroverted, loving soul, and it would break my heart if she’s rejected for a budget that’s out of her hands.

But her face?  That’s easy.  She’s got that.  She just points to her cheek and says, “Oh, that’s my port wine stain,” or “It’s purple from my laser surgery.”

Keith and I know that a kid can be made fun of for anything.  And that they will be, at some point.  We count it a blessing that Addy was practically given a flag, like a matador’s red cape among the bulls, to both attract and deflect attention.  As long as that mask is visible, it may perhaps be a bully’s go-to flaw, and I’d rather they latch onto that than any quality of her extraordinary soul.

 

Please Ask!

For all those lucky folks out there who encounter my gregarious social butterfly Adelaide and her Port Wine Stain, I tell you: Go ahead, Ask.

Seriously, mention it.  Ask about it.  Don’t worry about ‘shush’-ing your kid when they ask Addy what’s on her face.  It’s good for her, and, honestly, my favorite topic in the WHOLE ENTIRE WORLD is my offspring, so, naturally, anything to do with them is a fabulous topic for me to talk on.

I want to talk about it.  I want to tell you about Addy.  To tell you what it was like to see her face for the first time.  To share all my rookie scientific knowledge of those blood vessels and nerves and treatment options and research.  And how awesome Children’s hospital has been to us.  And how we’ve navigated her self-esteem so far.  And what I’m afraid of in the future.

Because in my experience, all my chattering will prompt you to remember some long-forgotten relative or acquaintance with a port wine stain or something like it, and when you tell me all about your uncle, I’ll learn just a little bit more about how to raise a kid whose face carries a mutation, and how to do it better.

So please, ask.  I want to answer.

Addy Flying Port Wine Stain Baby

 

Addy Wired Port Wine Stain Baby

Addy Mommy Port Wine Stain Baby

Addy Playing Port Wine Stain Baby

Addy Daddy Port Wine Stain Baby

Addy Laughing Port Wine Stain Baby

Addy Kitty Port Wine Stain Toddler

Addy Festival Port Wine Stain Toddler

Addy Dancing Por Wine Stain Toddler

Addy Playing Port Wine Stain Toddler

Siblings

SocialAddy

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“Another port wine stain! Sshhh…”

Confession: As you’ve seen here, I get excited when I see someone else with a port wine stain.  Really excited.  But suddenly, I face That Dilemma, now from the other side: do I ask them about it?

Running through my head: Will they think I’m too forward?  Am I touching on childhood trauma?  Do they hate their port wine stain and hate their life and hate their bullies and hate their parents?  Will I bring all that up by being one *more* person to remark on it?  Or, worse, will they think I’m a backward hick who’s never seen someone different?  Will they patronize me and give me a lecture about how we’re all alike inside in spite of our physical differences and I shouldn’t even notice differences like that?

But… I’m on your team, man!  I want to know about your stain!  What’s your story??  What have you learned?  What should I tell my daughter?  Did you treat it?  Why?  What was it like?  Would you do it again?  Do you ever cover it up?  What else do you know about it?

Usually, all this panicked thinking takes too much time and I just end up casting long, meaningful glances in their general direction while we’re standing in line, and hoping they’ll look up and suddenly notice a comrade in my daughter’s lovely similarly-port-wine-stained face, but instead they pay for their latte and walk out, perhaps vaguely aware of some stalker-like presence nearby.

Maybe next time.

“I’m Glad My Port Wine Stain Was So Dark!”

Three days after her latest laser surgery, Addy sang a solo in her school play while sporting the usual purple bruising that follows each treatment.

The color of her face never came up in the days between her surgery and her solo; honestly, I’m never quite sure if she’s oblivious to her darker face or if she’s aware and just doesn’t care.  (After 37 rounds of this, I’m guessing she’s blasé.). Sometimes she remarks on the difference in the mirror after a zapping, and sometimes she doesn’t. This time, no commentary.  So we didn’t say anything, either.  (Such is the eternal balancing act of a parent, right?  Making it clear that it’s an Open Topic, but not bringing it up prematurely and making an Issue of it…)

So, she hit the stage as “Mouse” in her school play based on the classic tale, “The Mitten”. She got to sing a solo, then scowl at the other animals who wouldn’t make room for the little Mouse in the Mitten.  (Yes, she enjoyed every moment on stage.)

Did I mention the process by which a kid ended up with a solo here? The teachers didn’t arbitrarily assign parts; instead, they first asked: “Okay, who wants to sing by themselves onstage at Art and Drama night?”  So Addy’s here because she wanted to put herself out there.  (A thousand points to the beautiful teachers and graceful families at her little school, for building an environment of safe creativity and self-expression; you know who you are, and we are grateful every day for you.)

I shot this video as a keepsake.  When Addy watched it for the first time, her eyebrows rose upon seeing the dark side of her face. “Oh! Wow,” she said, giggling. “Boy… Thank goodness my port wine stain was so dark, so I could look angry!”

Laser Surgery Number 37

Addy recently went in for her 37th laser surgery at Children’s Hospital!  She had a blast.  And no Versed this time, so she remembered the whole thing.

I had lost track of counting these procedures somewhere in the mid-20s, so I was very glad when our curious anesthesiologist, having seen the volume of records in her file, took the effort to count up the number of procedures leading up to this one.  I’d been planning such an investigation but hated the thought (so much paperwork to sift through!), so it made my day to have the work done for me.  Thirty-seven!  How time flies.

It was a perfect day for Addy.  The routine was followed by all, and that made my organized eldest very happy.  We arrived early enough for her to spend a few minutes playing with toys in the waiting room.  The nurse called her back to the pre-op area and took her height and weight.  Armed with hospital jammies, Addy settled into her hospital bed and changed clothes so the medical stuff could begin.  “Here’s my arm, so can you take my blood pressure now.”  She played with her favorite Princess toys (yes, she has favorites here).  Everyone asked their routine questions: the pre-op nurse, the dermatologist, the anesthesiologist, and the nurse anesthetist. No recent colds, history of bleeding, only one slightly loose tooth (not enough to worry about).  Addy’s bed was wheeled into the O.R., she got a combination of bubble gum AND cherry flavors in her mask, and she went to sleep.  She woke up groggily in the recovery area (though with great manners, according to the nurse there), and was returned to me to spend the next hour de-fogging, nibbling on crackers, and eating three popsicles in three different bright hues while Disney Junior played on the room’s TV high up in the corner.

She thought it was a perfectly lovely way to spend the morning.

As her mother, I found it to be a bit more work.  Thinking about our anesthesia options; watching for any signs of a bad reaction somewhere; talking to the dermatologist about the degree of zapping we should try this time (too little means little progress, but too intense will burn patches of skin permanently); verifying the semi-loose tooth myself to see how much the anesthesiologist should concern himself with it; wracking my brain for any recent fevers in our family of five, because heaven knows my mommy memory is so short that my toddler could’ve been puking yesterday and I would’ve forgotten.

It all went smoothly.

Annnnd, not gonna lie, any time spent with only one of my three children is basically two-thirds of the way to a day off…  So I, too, thought it was a perfectly lovely (and refreshingly quiet) way to spend the morning.


            

The Dappled Things of Beauty

Continuing the last post’s theme, I share a poem with you:


Glory be to God for dappled things –
   For skies of couple-colour as a brinded cow;

For rose-moles all in stipple upon trout that swim;
Fresh-firecoal chestnut-falls; finches’ wings;
   Landscape plotted and pieced – fold, fallow, and plough;

And áll trádes, their gear and tackle and trim.

All things counter, original, spare, strange;
   Whatever is fickle, freckled (who knows how?)

With swift, slow; sweet, sour; adazzle, dim;
He fathers-forth whose beauty is past change:

Praise him.

– “Pied Beauty”

Gerard Manley Hopkins


(These pictures are from the days following one of Addy’s recent surgeries, when “dappled” is an apt and lovely adjective.)

Addy dappled

Addy dappled after surgery

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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