Category Archives: 3. Addy Stories & Experiences

Our life, blogged.

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.

 

For Parents: How to Encounter Humans, Part 1 (of 2)

When you encounter other humans and they comment on your child’s face, there’s an overwhelming array of responses, not all of them nice, running through your head.

 

I have been there.

I have heard the misinformed, “Oh, that’ll go away!”

I have heard variations on the ever-humorous, “Wow, didja slap her?”

I have heard meddling old ladies tell me, “Get some sunscreen on that baby, she’s burning!”

I have felt defensive.  I have felt like screaming.  I have felt like rolling my eyes and snarking.

 

But.

I don’t.  In spite of overwhelming temptation (and a culture that tells us to be offended by every word and look), I don’t.  I give them room to be human.  Because I’ve been deeply humbled in a few encounters with other humans myself.

Allow me to share 3 of those encounters with you here; three times when I’ve embarrassed myself with my own indignance and pride.

I’ll continue the theme of how we ‘encounter others’ in my next post, but for now, just let me share my embarrassment with you today.

Parents, I hope these encounters help ease your mind and empower you with grace when encountering humans in the world, even when you’re not feeling very gracious.

 

1. I’ve written about this one before, but it bears revisiting.

One day, I was standing in line for ice cream at a crowded, noisy, charming small-town candy shop.  Little Addy (probably almost 2 at the time) was in my arms, looking backward over my shoulder.  Suddenly, a guy behind me boomed out with a loud voice (BOOMED! AUDIBLY!): “HEY!  SHE HAS A BIRTHMARK!”  My back stiffened, my arms tightened, my jaw locked; I checked Addy to see if she’d heard, and began turning around slowly (expecting, I suppose, to death-glare the nitwit into submission, because acting on any other maternal instinct would have gotten me arrested).

Before I could turn all the way around to glare down this ignoramus, he continued, “JUST LIKE ME!”  And, voila, there before me stood a tall, handsome, confident young man, maybe 30 or so, with a HUGE port wine stain on his face that was indeed just like Addy’s, only even bigger and even darker.  It wrapped up onto his scalp, which was proudly clean-shaven.

He wasn’t ignorant.  He was confident – and I saw in one glance that it must have been a hard-won confidence.  He had earned it.  He definitely knew more than I did.  His enthusiasm was contagious, and it was exactly what I needed.

This marked stranger was generous and happy to welcome us into his club.  I was ready to crawl into a hole, but we struck up a conversation about laser treatments instead, and he warmly answered my many questions about his experiences growing up with his stain.

I have never forgotten that feeling of welcome, of relief in finding the camaraderie I hadn’t even realized I’d been seeking.

And I’ve also never forgotten how close I came to shutting out such a rich experience, simply because I ignorantly assumed that anyone speaking a single word about my daughter’s birthmark must know less than I do.

 

2. Addy underwent her first laser surgery when she was 5 weeks old, and then for the next two years she had a surgery each month. So we spent a lot of time at Children’s hospital, hanging out in the pre-surgery waiting room with other families about to be admitted for various minor outpatient surgeries.  Dr. Z. scheduled his laser surgeries for the same day each month, and the play area was often dotted with other port-wine-stained kids and their apprehensive parents.

One morning in that waiting room, around her 9th surgery, I struck up a conversation with a mom whose healthy-looking 12-year-old daughter was sitting beside her.  Addy was crawling all over my lap, and her unique face came up naturally in conversation.  I began telling the mom what Addy was here for, and how Addy’s had a number of surgeries already, and how her face gets bruised every time.  (At this point, we had more experience than many other laser-surgery parents there, so I was used to answering questions.)

This mom replied that her daughter was also here for a laser surgery with Dr. Z.  I pointed to the play area and inquired which little one was hers, since the older kid next to her was clearly fine.  “Oh, no, it’s this one,” she said with a laugh, putting her hand on her twelve-year-old.  “She’s got a port wine stain all over her back, and also all the way down both legs, and it’s really thick, and she’s had a ton of laser surgeries already.  We lost track ages ago.  She’s on swim team, since contact sports aren’t great for her, and she used to get embarrassed about wearing a swim suit, but she’s just had to make peace with it now that she’s on the team.  We try to laser it whenever we can…”

I was amazed.  This healthy girl was hiding a stain like Addy’s?  And an even bigger one?  And I can’t see it?  And an even thicker one?  And she’s had more surgeries?  And she’s struggling with uncovering it for swim team?

The whole time I’d been talking to this mom, I’d been assuming that she probably didn’t know much about port wine stains, and that I was ‘informing’ her, while in fact she knew much more than I did.  Again, I wanted to crawl into a hole, but she was gracious and warm.

 

3. When Addy was just a month old and her port wine stain was still very dark, Keith & I brought her over to a friend’s home to meet his whole family, including his parents and his younger siblings (whom we ourselves didn’t yet know very well).

In that first month of Addy’s life, I had already received a lot of warm but maddeningly erroneous encouragement from ignorant people telling me, “Oh, don’t you worry, that birthmark will go away.”  Even the nurses at Addy’s birth had said it.  I had wanted to scream at every single wrong one of them: “No it won’t!  Not without laser treatments!  A LOT of laser treatments!”  They’d meant well, but they’d been confusing port wine stains with hemangiomas, and by the time that first month had passed, I’d had it *up to here* with bad advice, and was ready to snap if, so help me, I had to hear to that glib dismissal one more time.

We arrived at our friend’s house, and two younger sisters enthusiastically began giving me & Addy a tour of the house, talking over each other as we went.  “Ooo, what’s that thing on her face?”  “Is that a birthmark?”  “That’s so cool! Our little brother has one—“  “Yeah, but it’s like almost gone now—“  “Yeah, it’s like SO MUCH lighter than it was when he was born—“  “Because it was SO DARK when he was born—“  “But it went away!”  “Yeah!  Hers’ll go away, too!”

There it was.  I wanted to snap.  If they hadn’t been so charmingly exuberant, I would’ve just about lost it.  But I kept my cool because I love this clan.  I tried to diplomatically cut in with, “Well, you know, this isn’t a hemangioma, it’s a port wine stain and –“  “Yeah!  Yeah!  That’s what he had!”  And they were off again, chattering on the tour, completely oblivious to their own ignorance.

Later, we all gathered back in the kitchen to chat and to “ooh” and “aah” over Baby Addy, who was now asleep in her car seat.  Our friend’s mom gently pulled me aside and asked me with a sidelong glance at my baby, “So… Have they told you about Sturge-Weber syndrome?”

I looked at her, dumbfounded that she would know about Sturge-Weber, a series of difficult complications unique to port wine stains.  She called over her youngest son, brushed his hair off his forehead and said, “This is where his port wine stain was; you can still see spots of it.”

The other siblings started excitedly talking over each other again: “Yeah, it was really dark!”  “And he had LOTS of surgeries!”  “And he had other problems from it, too!”  “Oh yeah, he definitely had other problems, too!”

Ahhhhhh… okay…  So, when the sisters had said it had gotten lighter… they’d actually meant that it was lighter *after* a lot of laser surgeries… And they were trying to encourage me, to tell that me that it could get lighter with those surgeries… And they were living with Sturge Weber Syndrome on top of it.

They’d known exactly what a port wine stain was.  They were walking that same path, many steps ahead of me.  With many, many more bumps along that path.  And I had tuned them out, not even hearing their wisdom between the lines.

 

In each of the three moments above, I had assumed, without even trying, that the people around me were somehow more ‘ignorant’ than I; that they somehow needed to be ‘educated’ on My Baby.

The truth, in each instance, was that their bumbling hid not ignorance, but wisdom – which I could heed or ignore at my peril.

 

There’s a 4th story here – but in this one, the tables were turned.  It has nothing to do with birthmarks, but it definitely made me chuckle.

Back when I worked in banking, I got into the elevator at the end of a workday.  I worked on the 26th floor of a building filled largely with bankers and lawyers, and every stop on the end-of-day descent added another suit.

The doors opened to a law firm floor, where a family was waiting to get on – a lawyer, his wife, and their young son.  It appeared that Mom and toddler had visited Dad’s office at the end of the day to pick him up, and now they were all leaving together.

This mom looked tired and frazzled, and she spoke just a bit sharply at her toddler when he ran into our crowded elevator.  I smiled at the boy; he was cute, and he wasn’t doing anything naughty (other than being a toddler, and he could hardly help that).

As she navigated his empty stroller into the elevator with deep sighs, she looked at my obviously pregnant belly and my indulgent smile, and said to me with pursed lips, “Ahh, well, this will be you soon.”

Ohhhh, sweetheart.  I laughed out loud with my hand on my belly: “This is number three,” I clarified for everyone.

The suits around us chuckled.  She turned beet red.

She had probably assumed by my suit, age and departure time that I must be expecting my first child.  Not an unreasonable assumption.  And she had therefore assumed that she knew more than I did about toddlers; this clearly left her indignant that I, an ignorant stranger, would dare to silently comment on her mothering with my naiively indulgent smile.

In fact, I’d been in her shoes (twice already), and I’d had those days (twice as many).  I’d had many, many of those days.  Only with, ahem, TWO toddlers at once and a very pregnant self, thank you very much.

 

So even when you think that someone’s behaving ‘ignorantly’ and you’re annoyed, take a deep breath and give them room to be human.  Not only will you keep yourself from saying something that hurts them, but you’ll keep yourself from saying something that embarrasses you.

Because if they’re interacting with you at all, there’s probably a reason why.  They probably see some common ground.  And there’s a good chance that they might actually know more than you do.  Assume the best, give them grace, and listen for their wisdom between the lines.

 

 

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.

Port Wine Stains, Hemangiomas, and (some) Complications

Parents, if your darling new baby has a red birthmark, you will want to know the difference between a port wine stain and a hemangioma, two common types of vascular birthmarks, and what some of the related complications might be.

I can tell you what I know – which, admittedly, isn’t much, and is, I’m afraid, heavily anecdotal. But, no matter; I’ll still share it.

Port Wine Stain vs. Hemangioma

A port wine stain, which is what Addy has, is usually flat at birth, but then it grows over time. That growth means that a port wine stain will often become raised & nodular, especially if left untreated.

A port wine stain is a proliferation of blood vessels associated with a particular nerve. That nerve, otherwise responsible for telling its partner blood vessels in utero to “Stop growing!”, missed giving that critical signal at some point during development – so the blood vessels kept growing and growing. (In Addy’s case, the error is associated with the middle branch of the trigeminal nerve, on the right side of the face.) As a result, the capillaries are abnormally wide in diameter (like, over 40x wider).

A hemangioma, on the other hand, is raised at birth – you can feel it if you run your finger over the skin – and it may grow a bit in the first year, but then it will recede or ‘implode’ on its own.

A hemangioma is a cluster of blood vessels by the surface of the skin, sometimes medically referred to as a benign ‘tumor’ of blood vessels. It’s often very bright red. These are the common “strawberry marks” we all know on babies. They usually fade on their own.

I can’t tell you how many birthmark misdiagnoses I’ve heard. Many of them were directed to us by well-wishers, including nurses who told us “Oh, that’s just a hemangioma, it’ll go away!”; others have been directed to some of my readers by aloof primary-care doctors who weren’t familiar with port wine stains. Get your child to a specialist who understands vascular malformations (a good dermatologist should know the difference), and get the right diagnosis.

Here’s why: if your child has a hemangioma, it will probably disappear on its own, and if it doesn’t, well, you can cross that bridge when you get there. But they usually go away without intervention.

If your child has a port wine stain, though, it will not go away on its own; in fact, it will grow with your child. And as your child develops, their blood vessels and the skin above them will only develop & toughen, making it harder to eliminate the stain later. The worst medical advice in that critical first year is “Ehhh, let’s just see if it goes away on its own.” It won’t. It will only toughen. We were lucky – Addy went in for her first surgery at 5 weeks old, and had 9 more before her first birthday.

Complications

Complications can arise depending on how ‘deep’ the birthmark is, and where it’s located, which are determined by when the error occurred in utero.

If the error of a port wine stain occurred earlier (i.e., the nerve missed giving that critical signal to “Stop Growing!” to its associated blood vessels), then the port wine stain will be deeper in the skin, and wider on the body.  For example: Addy’s stain covers much of the right side of her face (along the V2 branch of the trigeminal nerve), and is relatively difficult to treat, hence the 43 surgeries so far.  It’s deep.

Meanwhile, her friend has a small stain along the exact same V2 branch of the trigeminal nerve, but it’s the size of a half-dollar coin on her cheek, and it disappeared after a half-dozen laser treatments. That’s because the friend’s error occurred later in utero, while Addy’s occurred earlier.

Other kids have massive vascular malformations that erred even earlier than Addy’s; one young woman told me that her brother was born with a large one that totally covered one shoulder and down onto his back, and it was so large (and deep, and thick) at birth that the doctors weren’t sure if he would be okay. He avoided contact sports, but otherwise has been living a healthy life.

Depending on where the stain is, a port wine stain can cause other complications. For example, if the stain is on the V1 branch of the trigeminal nerve (the optical branch, along the forehead), the risk is significantly higher for Sturge-Weber syndrome, which is a constellation of issues stemming from having malformed blood vessels in the head, including calcifications in the brain (which can hinder brain development) and seizures. An MRI helps diagnose Sturge-Weber issues in the brain.

Since Addy’s port wine stain touches onto her forehead, she had an MRI at 5 months of age, to make sure that there were no vascular malformations in her brain; all was clear.

But glaucoma is definitely a concern, since the proliferation of blood vessels can also cause undue pressure on her eye. She is checked for glaucoma annually.

Of course, glaucoma isn’t the only eye issue; as you’ve read here, Addy’s tear drain was pinched off by the pressure of all the encroaching blood vessels around it. She had a tube put in a few years ago to try to prop it open. Even though it fell out shortly afterward, it did successfully open up the plumbing for a while, and it bought her some development time. Unfortunately, she’s been tearing up again in her right eye, so we may have to do it again.

The port wine stain is also in her mouth. This is fascinating! As the right and left sides of the head develop in utero, they ‘meet’ in the middle; thus, any error tends to only show up on one side of the face. Addy’s face is split down the middle, even down to her tongue and uvula! If you ask her to open up her mouth, you’ll see her tongue is half red, half pink – and if you look farther back, even her uvula is precisely half red, half pink.

The extra bloodflow to the right side of her mouth meant that her teeth developed earlier, and popped out of her gums earlier. (And, luckily, they popped out fast. Teething wasn’t so bad!) As a baby, she had an adorably lopsided smile for a short time until her left side came in.

But now, all that extra bloodflow and tooth development means a lot of crowding; the well-populated, well-nourished right side of her mouth is crowding out the left, and an extra tooth is popping in above the others (affectionately called ‘The Snaggletooth’), because it doesn’t have any place to go. So, we can add significant orthodontia to our 2019 budget.

When she brushes her teeth, bleeding from the right side isn’t uncommon. In the wintertime, she gets one-nostril nosebleeds on the right side. We try to minimize all possible injury to her face, gums, nose, and scalp on the right side, because she bleeds more than the average bear in those places. And, if you look closely, you’ll see that her bones are actually a bit bigger on the right side of her face, due to the extra bloodflow. It’s not actually a problem (or even noticeable) for Addy, but I know another little girl with a port wine stain who had to see a craniofacial surgeon to see if anything could be done about some too-fast bone growth along her stain.

So, there are complications to these port wine stains. Hemangiomas probably bring various complications, too, especially very large ones, but my experience is limited to port wine stains on the face. These are simply some of the things we’ve watched & worried over with Addy. Each birthmark is unique, so please don’t hesitate to contact me with questions and pictures if you want a mom’s advice. I’m not a doctor, and I will tell you to ‘get thee to a dermatologist’ if you haven’t yet, but I’m happy to navigate these waters with you.

For the sake of trivial interest in birthmarks, I can tell you that there’s another type of birthmark called a nevus, which is a proliferation of skin pigmentation, rather than blood vessels. (Have you ever seen someone with a really dark brown or black birthmark? Sometimes hairy? That’s a nevus.) We know a little girl with a nevus on her forehead, and the complication her parents have to worry about is skin cancer. Their pre-emptive treatment is skin grafting. (I’ll take lasers any day!)

Also, among blood-red marks, there’s even a third type after Port Wine Stain and Hemangioma: Hematoma.  In short, a hematoma is a red spot that looks like a hemangioma, but it usually comes about by injury or disease. Clarence ended up with a small hematoma on his face after an injury, and he got to have a laser session with Dr. Z., but I’ll tell you more about that in another post.

So, there: you’re ready to win obscure trivia questions about birthmarks! You’re welcome.

Addy_Port_wine_stain_at_fair

It’s not always easy to see, but check out the way her teeth are pushed over from the port wine stain on her right to the left — lots of activity on the right side! Lots of extra blood flow for growth.

Addy_PWS_in_mouth

Addy graciously let me photograph the inside of her mouth; the port wine stain invades her mouth, but only on the right side.

The Stranger in Macy’s

It’s good to be back!  For the last year, I’ve been writing more for my mother than my daughter over at CaringBridge (FYI — she’s doing great!).

But Addy’s EBC speech (below) brought me back here, and I’ve been wanting to share a sweet story with you from a recent outing.

Keith and I were walking with the kids through a Macy’s department store one afternoon.  We move slowly as a herd, and passing all the shiny things in the jewelry department slowed us down even more.  With plenty of time to glance around at the other patrons, I saw a woman standing with her husband at the jewelry counter.  As she turned her head back and forth in conversation between her husband and the employee helping them, I noticed a big, dark, red splotch on the front of her face.

I stared, like any good 5-year-old would do, but tried to be at least a little bit discreet while I determined if it was a birthmark or a burn scar or something else.  With each mark being so personalized & unique, it can be hard to identify from a distance; you just know there’s something big there.

She didn’t notice me staring, thank goodness, but I quickly realized that it was because she had locked in on Addy.  She was staring at Addy.

I nudged Addy to get her attention from the shiny things for a second, turned her toward me, and whispered excitedly, “Don’t turn and stare, but I’m pretty sure there’s a lady over there with the exact same stain you have.”

Whenever we encounter someone else with a unique feature, like the darkness of a birthmark, the baldness of alopecia, the stature of dwarfism, or the gap of a missing limb, I treat it like a celebrity sighting.  It’s all in the attitude – a combo of “Ohmygoodness they have something super-unique too!  Agh!” and “Be cool, be cool.”  With that, my children have learned that people who ‘stick out’ (like celebrities, or Addy) are totally positively awesome, and that they might (like a celebrity) not want to be disturbed.  With small children, one can never teach too much discretion.

So when I told Addy there was another person just like her nearby, her eyes got big and excited and she got twitchy as she itched to turn and look but knew better.  She stage-whispered, “Where?”  “Behind you.”  Addy turned naturally as if to look at more jewelry, glanced at the woman discreetly, then played it cool, turning to me, “It’s even on the same side!”

I got the impression that the same thing was happening between the couple buying jewelry.  I thought about introducing ourselves, but hesitated; this woman was a bit older than I was, which means she had grown up before the unique-is-awesome attitude pervaded the culture as widely as it has by now.  People from Generation X and earlier don’t always have good memories of growing up with their unique feature; some came from families that never spoke of the birthmark at all.  They’ve made reluctant peace with it, but they’re sick of being noticed in public; in their experience, being noticed isn’t a good thing.

There wasn’t much time to think about it, though, because the next thing I knew, the woman was leaving her bag with her husband and walking toward us.  I turned expectantly, as if we were going to engage in the usual polite grown-up introductions, but she walked right by me and, without saying a word, engulfed my daughter in a bear hug.

Addy hugged her right back.  They stayed there for a long, long moment, and I heard this stranger speak quietly into Addy’s hair: “You are so beautiful.  You are so beautiful.  Don’t ever let anyone tell you otherwise.  You are so beautiful.”

And that’s how we met.  After detangling from Addy, the woman said to us, “I’m so excited!  I mean, I often see other birthmarks, but it’s really rare to see someone with a stain, just like mine, on the right side!”  We talked about how pretty it is, the way it ‘sweeps’ up to the hairline.  Addy told her proudly that she’s had forty-something surgeries, and the woman nodded: “I had thirty-seven.”  I just about fell over – this woman’s stain was really dark!  These two birthmarks were similar even in their resistance to treatment.  “Keep zapping!” she encouraged.  Addy told her about having a tube down her eye, and getting checked for glaucoma, and the woman nodded, “Yep! Me too.”

I’m so grateful that this woman came over.  I’m grateful for her confidence.  I’m grateful for her willingness to bear-hug a stranger’s kid.  My daughter got to meet someone like her, someone she could identify with, someone who’s walked in her shoes first.

Addy talked about it afterward like she’d been personally approached by a celebrity.

And, in a way, she had.

 

 

Chance of a Lifetime

My dear readers, this happened:

Addy EBC screen 1

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.

https://eaglebrookchurch.com/media/past-messages/when-im-weak/?fbclid=IwAR0TyMu27tVBx2bZVsG89KxW-QEv12oK1DhmVF5H5MhpAQmgXLWDQI1ZeBY

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.

Addy EBC screen 8

“I got a compliment today!”

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…

 

 

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