Category Archives: 3. Addy Stories & Experiences
Our life, blogged.
My dear readers, this happened:
That is a picture of Addy, standing up in front of thousands of people, to give a speech and handle a live Q&A.
My darling birthmarked baby, whose port wine stain made us wonder how she’d face life, got up and did this three times in a row, overall speaking to 30,000-35,000 people last weekend.
Addy had the immense privilege of being asked to speak at Eagle Brook Church, one of the largest churches in our metro area, as part of a sermon on God’s strength showing up in our weaknesses. This was our first time being there.
Here is the link to the recorded service; I recommend the whole message (38:06 if you click the “Message Only” button), but if you want to skip ahead, Addy’s segment starts at about 24:30.
Dr. Merritt (“Pastor Bob”) researched meticulously. I only met him shortly before Addy went up on stage. I didn’t even provide the photos; he picked them from my blog. I didn’t provide him much commentary at all. Everything he said about our story, he distilled himself from the words I’ve written here – and I couldn’t have distilled my own words better if I’d tried. This man isn’t kidding when he says he’s anxious about speaking his messages; it makes him prepare carefully, and God moves powerfully through it. His message resonated. Addy may have helped it resonate, but it was deeply moving long before she ever got there.
I was touched by how well he told her story. He and his staff warmly welcomed & closely shepherded us through the weekend, and I am immensely grateful for it.
I now understand the immense anxiety of powerlessness. This event, this speech, this privilege, this moment was in the hands of a ten-year-old kid, and there was nothing I could do to prevent disaster or help mitigate a single thing. Once she left the backstage ‘green room’ with her mic clipped to her little uniform jumper, it was all on her.
This wasn’t life-or-death. This wasn’t major surgery, handing off the car keys, or freshman year of college. But I was sending out my little girl, so tiny on that stage, to speak a speech and to handle live Q&A in front of thousands. If she froze mid-speech, if she fell off the chair, if her jumper caught, if she got sick, if she answered awkwardly, if anything happened to her that we’ve all seen happen to other people in public, there was nothing I could do. Thousands were watching. How much will therapy cost if this goes sour?
She remembered her speech. She even remembered to do the shortened version. Twice she accidentally launched into the longer version, but soon caught herself and smoothly jumped down to the right spot in the speech without anyone even noticing.
She answered Pastor Bob’s questions. It’s so easy for humans to give mistaken answers, to blurt out something embarrassing by accident; adults do it all the time, and even professional talking heads do it and lose their jobs. But she answered them just fine.
I don’t think I breathed until the applause began and she could leave the stage. She got three standing ovations, from a quiet northern congregation that doesn’t do standing ovations.
What do I say, after such a weekend? I am rarely stuck for commentary, but I’m coming up short right now.
Readers, you know Addy’s journey. Many of you are parents of unique children, too. You’ve hoped, like we have, that your baby will be able to simply walk into a classroom someday without feeling embarrassment or shame. That’s a high-water mark that we don’t take for granted. We can’t.
Moments of this exhilarating magnitude are definitely not guaranteed, let alone expected.
But they’re possible. And not just in spite of, but perhaps because of, that uniqueness.
May her words (and Dr. Merritt’s) encourage you.
Had to share this before I forget!
Addy came home from dance class last night and told me, “Mom! I got a compliment today!”
Wait for it…
I’m excited to share these with you! (To my followers, sorry for the double-publishing snafu – my videos didn’t embed properly on first attempt…)
It only took me 6 months, but I’m finally sharing three videos I compiled when Addy had a recent laser surgery.
This is the first time I’m sharing a video glimpse into our conversations, so this will be a chance for our far-flung readers to meet Addy in action.
(They’re on my tiny little YouTube channel, so that all of my videos can be in one place at WhatHappenedToHerFace.)
The context: For the first time, Addy would walk into her dance class with a very bruised face. And there would be some at school who might notice the change.
So, since she’s old enough, I conversed with her about the experiences and tried to catch as much as I could on camera.
First, I share my thoughts on how to approach these conversations.
Parents, you hold a significant responsibility as the person your child looks to for help judging if an encounter is positive or negative. And no matter how indignant your adult-with-baggage self may feel when you see your precious child fielding questions, remember that these encounters don’t have to be negative!
Handle life with humor and grace, and your child will absorb your attitude.
Then: going to school! I caught a few minutes with her before we got in the car:
Finally: after dance class, with some help from Elly. We debriefed the experience, and I intentionally kept my attitude up for her sake.
(And perspective is everything! Movie stars!!!!)
Enjoy! I hope they encourage you in your own conversations. Her 41st laser surgery is coming up next week, so I’ll update you on that soon…
Over a year ago, a gorgeous young woman from London named Millie found my blog and sent me a wonderful note. We corresponded a bit and I’m copying excerpts of that correspondence here, because it’s context for the beauty you’ll see below.
But the real reason I’m sharing Millie with you, dear reader, is her beauty, her creativity and her confidence.
(And her incredible ART PROJECT. You’ll see that below. READ WHAT SHE SAID ABOUT IT. All the rest is context.)
Here is Millie’s first note to me last year:
I’ve written out three different messages and failed to send them but I will send this one!
Your daughter’s confidence and smile have been the light in my life when I’m feeling low about my port wine stain (uncannily similar as mine covers also my right cheek, lip, nose and forehead slightly!).
Regrettably, I have covered my birthmark with makeup since the age of 11 (starting high school – now 17) but previously felt no real qualms about my appearance; I was a confident, happy, feisty little girl.
Hitting such a low of wanting facial reconstruction surgery a few months ago, the beauty of your daughter has been my inspiration to accept myself and use my suffering as a tool for creativity and awareness.
Turning 18 in May, I’ve decided I won’t let something which I have no control over determine my life, and have been practicing looking people straight on and in the eye (something unthinkable less than a year ago). I am trying to diagnose my reasons for hiding part of myself and my consequential shame of my appearance.
I am using my final A-level art project to look at changing society’s perceptions of physical differences. Your website and Adelaide have been a huge inspiration for this. I hope to someday meet my role model!
My sincere gratitude,
Even without ever having seen Millie, I grabbed the chance to point out the beauty in a birthmark like Addy’s (after all, I know the shape of that stain by heart):
“… Parenting [Addy], and pondering her stain, I’ve come to appreciate that every human, no matter what their appearance, struggles with their uniqueness. None among us is anatomically perfect; some simply have more obvious imperfections. Slender runway supermodels wish that they had Sofia Vergara’s curves, while Vergara-esque curvaceous babes wish they had Heidi Klum’s legs. Even the greatest beauties can point to another human’s unique features with envy.
…Or, said a different way, any beauty can point to her own unique features with contentment. I wish more would; so few do.
I want to share with you something that occurred to me shortly after Addy was born: look at the*sweep* of her (and your) port wine stain. The way it starts in the middle, then sweeps upward as it goes toward the hairline?
Now look again at all those makeup advertisements in magazines and on billboards. Look at what they tell you to do with your blush, your bronzer, your eyeliner, your eyeshadow, even your hair: “Sweep up” for the most flattering effect on feminine features.
Look for “the sweep” in other places, too – the shape of a basic Venetian carnival mask, for example; it sweeps away from the eyes, out and up toward the hairline. Instant glamour.
Everyone else needs masks, makeup and hairdos to approximate nature’s flattery; you and Addy were born with it.”
After Millie’s final art project was complete, she sent us THIS:
“…I have just handed in my A-Level art sketch book and final piece, and, as I mentioned, decided to look at changing society’s perceptions of beauty. I ended up using this as a tool for experimenting with my own appearance and difference: my port wine stain.
I played with typically beautiful images in society (BAFTA awards, the cover of Vogue, art work, etc. that we automatically accept as beautiful) to display differences. I played with the idea of symmetry, using a butterfly, and used makeup to emphasise rather than hide my birthmark.
I decided to do a final piece which celebrated my birthmark, using the artists Gustav Klimt and Chris Ofili as decor inspiration.
This was a strange, terrifying and liberating experience, but I am so glad I have done it. Your blog really was a turning point for me; rather than crying about my mark and wishing it wasn’t there, I am now seeing it as an opportunity. I think about what you said – the upward swish complementing natural beauty where others need makeup.
When I went for my last laser, I couldn’t wear makeup; so even in the car to the hospital I didn’t allow myself to make eye contact with anyone for fear of seeing them stare… Every time I do this it’s very strange but again, liberating, especially this time because I didn’t try to hide… After a few weeks (of not wearing makeup while the bruising went down) I actually went for a no-makeup run with my sister — the adrenaline made me run faster!
… I have grown in the sense that I now wear makeup for society rather than for myself… When I’ve cried to my mum, she said ‘patrons and people who change the world don’t have it easy.’ I want to somehow help society see that different doesn’t automatically mean bad.
After picking myself up off the floor at the gorgeousness of her face and Klimt-inspired work, I replied:
“Thank you so much for sending!! …I’m thrilled, inspired, and humbled to have served as any sort of encouragement on your journey! It can be hard to forge something new. So many people tie beauty to perfection without realizing it, and even those who are trying to embrace imperfections make the same mistake by hushing any admission of ‘error’; it feels quite liberating to admit that something’s an error, and still see that it’s beautiful.
I’d love to see more of your project!”
Luckily, she obliged, and explained her project in a bit more detail:
“I have [attached] a photograph of the BAFTA award I made using a cast of my face, then sprayed bronze and filled in my port wine stain with gold leaf. (I purposefully made the birthmark worth the most).
[BRILLIANT, no?! Read that part again – she made the birthmark worth the most…
There is a picture of my final piece: a mixture of oil painting, collage, gold leaf and mosaic. I included the butterfly picture I worked from as well.
…The theme set by the exam board was ‘Flaws, Perfection, Ideals and Compromise’ which basically set up a stomping ground for me to play around with this, which I’ve wanted to before in my art but couldn’t out of fear and shame. This time it felt a little different…
(We’ve enjoyed more correspondence since then, but for the sake of brevity I will leave this exchange as is here.)
Enjoy Millie’s art, dear reader. She is a treasure!
Our three kids (Addy, Clarence, and Eloise) and I went to the farmer’s market early Saturday morning. Halfway through, a kind flower vendor handed each child a free daisy – lovely, rich yellow with strong green stems. The children received the gifts with wonder (apparently, I don’t do enough cut flowers in my house) and carried their treasures around the market carefully.
Not 10 minutes later, I heard Eloise shriek with a stumble and saw her hunched on the pavement sobbing. I tried to help her up (at age four, random falls aren’t uncommon), but she pushed away my help: the injury was not to her but to her daisy, and she wanted to protect the scattered yellow petals for rehabilitation, panicking that I might step on them. Her grief was intense as she grappled desperately for the petals and tried to stick them back on her flower, and she sobbed even more when they fell back down.
I squatted down to join her and helped her cradle her daisy protectively. I softly agreed that it was very, very sad that the daisy lost its petals. “But, Eloise, look – it still has petals. It still has a lot of petals, doesn’t it?” A choked sob was all I could get for a ‘yes’.
So I went a little deeper, talking quietly and asking her questions while trying to talk her off her ledge:
“Eloise, your flower is going to die, right? All flowers will wilt and lose their petals and eventually die. Even Addy’s and Clarence’s flowers will lose their petals. It’s natural, and it’s okay. But we enjoy them now, and we still think they’re pretty. Even people get damaged, and are still lovely. You know how we get scrapes and cuts that turn into scars? That’s part of life, isn’t it? There’s damage, and there’s still beauty. I have scars and I’m still beautiful, right? If people can be beautiful with our scars and damage, a flower can be, too. Look how pretty your flower still is!”
Addy had been listening next to me, and she cut in with gusto: “Elly, my face is kinda-like-damaged with a port wine stain, right? And I’m still beautiful, aren’t I? So, you know, even though my face has something on it that shouldn’t be there, kinda like damage or a scar, I’m still totally beautiful! Right?”
Elly, who admires her Beautiful Big Sister as only a little sister can, nodded thoughtfully and sniffed, “Right”. She let me help her up, still cradling the daisy, and we continued through the market.
I heard no more sorrow about the damaged flower. If you know Eloise, who inherited all our passionate Irish blood, you know how rare it is for her to let an injury go without further comment. But she enjoyed her flower for the rest of the morning as if nothing had happened, and let it go when it finally faded later that day.
Sometimes I simply hand the parenting baton off to my eight-year-old Addy, knowing that I’m no longer needed at a particular moment. In her love of Truth, she acknowledged honest damage; in her wisdom, she saw its beauty, and in her confidence she pushed that vision out to her sister. And little Eloise got her flower back.
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.)
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:
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!”
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.
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:
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.
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.
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.
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.