Thursday, March 31, 2011

My Son Was Born "Imperfect" - What Would You Do?

I am really excited to be joining Connected Mom as a writer. I have three wonderful children, one of whom is 9 and in Elementary school. His name is Styles and he is the most wonderful, sweet boy I could have ever hoped for. I will be writing a lot about issues regarding his age range so I'd like to use my first post as a way to introduce Styles and to also address one of the most difficult parenting decisions I've ever had to make.

This post has the potential to be the longest blog post in all of history, simply because there is SO much history and science behind Styles’ birthmark. However, I want to keep this more about my emotions and less about history or science so I’ll do my best to do just that.
Styles was born after 3 hours and 6 minutes of labor, from first contraction to finish. No lie. Nobody expected him to be born so quickly; I was young, he was my first child, yadda yadda yadda. That said, everyone and their mother was in the room when he was delivered because the nurses didn’t have time to kick ANYONE out. And the entire thing is documented in photographs. I’ll gladly send you a picture if you’d like
to see. Or not.
When he was born, he was pink and beautiful and had a very prominent purple stain on his face. I was in shock that I had just delivered a baby so I didn’t notice it at first but everyone around me seemed to see nothing else. They didn’t care that he had perfect Agpar scores, or that he was breathing, or that he had 10 toes, and 10 fingers. They were more concerned about this “thing” on his face. Questions swirled around us, “Would it fade?” ”Would it grow?” ”What will you do?” ”People are going to stare…what will you say?” ”Maybe the OB rubbed his face like that as he massaged your perineum during delivery?” “Will you sue?” I could go on for another thousand words but I’ll stop now. His pediatrician came in the next morning with the news. There were two “Worst Case Scenarios”. One was that it was a “Strawberry Hemangioma” where it would grow in size and become raised, possibly blocking his vision due to its placement on his face. Treatment for this would include shots of steroids in the hemangioma, causing it to shrink so that it wouldn’t hinder his eye sight. The second scenario was that it was just a port wine stain. That in and of itself is not so bad. What he was
concerned about was that because of its placement, it could very well be associated with Sturge-Weber
Syndrome. SWS is not life-threatening and many kids with it have relatively normal lives. It can cause calcification in the brain leading to some learning difficulties, delayed or difficult speech, seizures, and possible paralysis or weakness on one side of the body. We would have to wait with both diagnosis to see if either presented itself. This was all VERY overwhelming for me. I was young, this was my first baby, and I just didn’t know how to handle the news. I still didn’t really “see” the birthmark. He was my beautiful baby no matter what. I was aware of the stares in public and I couldn’t close my ears to judgmental remarks from my family. But our pediatrician was certain that it would fade after puberty, and urged me to let it be.
After a few MRIs and CT scans, Sturge-Weber was ruled out and Styles’ birthmark never did grow in size. It
has actually faded quite a bit from its original magenta, but still covers the same percentage of his face as it always has. It has been determined that it is a simple port wine stain, strategically placed like a slap across the face, absolutely cosmetic in nature. I decided when he was very young that I didn’t want to put him through the surgery necessary to have it removed. It involves pulse-dye lasers and many, many treatments. Because of its proximity to his eye and his age, they would have had to put him under general anesthesia for treatment. Yes, the younger the skin, the better the healing but I couldn’t risk putting my child under general anesthesia for a cosmetic “flaw”. To me it felt like giving a 2 year old breast implants or liposuction. Was it really necessary?
I fretted over what people would think as he grew up. Kids can be cruel. I was laughed at because of my name. When I moved to Alaska at the age of 9, people teased me because of my southern accent. My last name rhymed with “butt” so I often heard, “Summer Northcutt has a big butt” (which is/was TRUE – can you blame
them?) I was also called “Winter” and endured endless snickers as we learned about the seasons. There is always something to tease a kid about. But was I setting my son up for failure by allowing this birthmark to remain on his face? I decided no. His name is “Styles”. He has WHITE hair and a birthmark on his face. He’s going to be teased about SOMETHING at some point in his life. What doesn’t kill you makes you stronger, right?
I still wasn’t convinced but I waited. People came up to us in public and often asked nicely what was on his face. But sometimes we’d encounter
some rude, uneducated jerk who would ask us “what happened to his face” to which I would reply, “It is a capillary hemangioma.” I never explained to those people that it was simply a birthmark. Using the scientific term with classless people was much more satisfying to me
since I couldn’t way what I really wanted to say:
“What happened to YOUR face?”
As Styles grew and learned to talk, I taught him that it was a birthmark. I never made a big deal about his stain because I didn’t feel that it needed to be a big deal. If I made it a big deal, then it would be a big deal to him and I didn’t want to be the cause for any self-esteem issues that he would suffer as a result of having a birthmark on his face. Styles learned that when people asked him what it was to simply respond with, “It’s a birthmark” and then be on his merry way. As a result of his flip nature about it, he has not endured any teasing or name calling, which surprises me as he gets older and is now in the 4th grade. I firmly believe that because he is so nonchalant about it, kids move on to something else because they see that it doesn’t bother him.
When Styles was 4 I sat him down and had a serious talk with him about having it removed. I told him that the decision was his and that I would support him no matter what he decided to to. His response to me was, “But
Mom, if we get it taken off, I won’t be Styles anymore!” I choked back the tears as I laughed and gave him a huge hug. OK, baby, whatever you want.
I’ve received a lot of flack from family and friends of family whose opinions matter very little to me. They all say that I am doing him a disservice by not taking the initiative as his parent to have it removed. But as you can recall from the beginning of this post, it is simply cosmetic. My mom never got me a nose job when someone told me in the 6th grade that if I ever wanted to be french kissed that I’d have to break my nose. (Thanks a lot, Zach Brown). My mom has a LONG list in her head of the names that people are going to call him. I won’t even bother listing them, it’s quite ridiculous to pretend she can see into the future and know that he’s going to be called “this thing” or “that”. If you’d like to know what Styles is going to be called in the future by some jerky little kid, feel free to contact her and she’ll regale you with at least 649 different names.

I personally think that it will make him a stronger person. I want to use his birthmark to teach him that we all have differences. Sometimes, those differences are obvious and other times they’re not, but they’re there. I want him to know that beauty lies on the inside not on the
outside. Not based on the color of someone’s skin, or because they have a birthmark, or other physical or mental handicap. I don’t want him to date girls who only want him because he’s attractive (another argument my mom has for getting it removed – God forbid Styles not some day have a hot girlfriend). I wouldn’t want him dating superficial girls like that anyways. I want him to marry a woman who loves him for his outstanding personality, intelligence, and wit. Not because *GASP* he has a birthmark on his otherwise very handsome face.
I know that it frustrates him sometimes when the same people ask time and time again, like the answer is going to change. For instance, we were in the grocery store this week and this annoying little twit saw Styles in an aisle. Apparently he knew who Styles was from school but is in a younger grade. He asked Styles “what happened to your face?” and Styles told him that it was a birthmark. The kid kept asking. It was SUPER frustrating for me as a parent but I stood back and watched to see what Styles would do. He completely ignored this little turd-hole after he answered him the second time and kept talking to me like he couldn’t hear
him. I was very proud. Because I don’t want to make a big deal about it, I didn’t ask him how it made him feel. He knows that he can come to me when and if he wants it removed. So we went to check out and this same little nit-wit leaves the aisle his mom is in and runs over to our aisle to ask Styles AGAIN what happened to his face. After the FIFTH time, I bent down and said loudly, “IT’S A BIRTHMARK”. He said, “what happened to your face?” (for the sixth time) and I again said loudly, “IT’S A BIRTHMARK AND IT’S BEEN THERE SINCE HE WAS BORN.”
The little monkey kept asking and I finally said, “OK the truth is, he was annoying me, kind of like you are right now, and I slapped him. You want one too?”
He ran back to his mommy and I have NO clue whether or not he told her what I had said and quite frankly, I really don’t care. OK so I shouldn’t have handled it that way, but this kid was SERIOUSLY irritating me. I finally talked to Styles when we got to the car (cough…van) about this kid and how he (Styles) had reacted. I told him that I was super proud of him for being calm about it. But I also gave him full-on permission to make up some sort of radical story about his birth mark. I told him that if someone keeps persisting, that it’s completely OK to tell them that he was burned on his last safari through Africa and that it will never go away. Or that he was licked by a tiger in Nepal and that tigers tongues are SO rough that it left a scar. Or to simply say, “What happened to your face?” He laughed at me and told me that he was afraid he’d get in trouble at school for saying those things but I told him I had his back. I reiterated the fact that he should always start by simply saying, “It’s a birthmark” but on the rare occasion where someone won’t back down and take that truthful answer for what it’s worth, to go ahead and tell a little lie. I also reminded him that when and if he ever wants it removed, that we’ll do it in a heartbeat. I’ve told him that it won’t hurt my feelings and that I just want him to be happy and make the decision for himself. He says it doesn’t bother him and that he wants to
keep it. And he can keep it, for as long as he wants. It’s his to do with as he pleases.
I’m proud of the decision I’ve made. It wasn’t an easy decision and it certainly is not a decision that I made lightly. It was not made due to finances or selfish ambitions. It was made the same way I make all decisions regarding my children: after lots of research and soul searching. It is a decision made by me (his parent and loving mother), in a step to do what I believe is best for him. It might not be the same decision you would make for your child and that’s OK. I don’t judge you for your decision, just please try to understand mine. We all want the same thing: the very best lives for our children and this is what I’ve chosen for my super-smart, outstandingly witty, sweet, loving, accepting little boy.
What would you have done?


Ashley said... [Reply to comment]

I read this somewhere else before and I think his birthmark is beautiful. He is right, it makes him who he is! You are a wonderful mother for leaving the decision up to him. <3

Kayce Pearson said... [Reply to comment]

I love this Summer. What an amazing way to teach your son that he is special, that everyone is different, and to embrace the man he is.

Just so amazing :)

ErinKate23 said... [Reply to comment]

This is absolutely beautiful. I can only hope that I would do exactly what you did - teach your son to love himself for who he is. Your son is no imperfect; he is perfect, the way that God and/or nature made him.

I especially love your suggestion that your son respond to questions with wild stories. My brother has severe psoriasis that strangers often ask about... he also likes to spin awesomely improbable stories about running into burning buildings to save a neighbor's prized goldfish. He's 31!

Your story is inspiring. MUCH love to you and your family, and thank you for setting a wonderful example about truly loving our children for who they are right now.

Helen said... [Reply to comment]

My son (6 months old) has some skin tags - one right in the front of his ear and one in it. The dermatologist said it is cosmetic unless we notice hearing problems, so we will leave it for now. They'd have to put him under and like you said - no thanks!

Amber said... [Reply to comment]

You. Are. Awesome.!

Jenn said... [Reply to comment]

You are awesome, and your son is my hero. I absolutely love this post.

Shawna said... [Reply to comment]

As someone who has two port wine stains and knows that chances are that she will eventually have a child with one. I love this post! (I have one on my left calf that has faded quite a bit with age, but stretches from my knee to my ankle and one I just learned about on the back of my head. It may be covered with hair now, but it was highly visible until I was 18 months old.)

Mama Mo said... [Reply to comment]

You handled it beautifully, mama! Good for you :-) I knew a man in college who had a similar stain on his face. It never held him back. He was in my SCUBA class, a firefighter, and was on his way to Antarctica to stay a season as a medic/firefighter for the science stations there.

Emily said... [Reply to comment]

love everything about this. when i was in college i had surgery on my feet, so that i was in some form of a cast for 6 months. some people would ask me every day what happened (as though my answer would change from the day before) and i started making up answers, too. my favorite was to deadpan "landshark" but then I came up with a long, involved, "so detailed it has to be true" story about a medicine man in Morocco. It was always very satisfying to tell. Tell him to turn on Animal Planet or Discovery and just start picking the most outlandish things. It will be great fun. And good for you, mama! How much better this planet would be if all moms accepted their child's cosmetic "flaws."

The Running Knitter said... [Reply to comment]

I loved this post. You are doing a wonderful job raising your son, and he is an amazing person.

CrunchyVTMommy said... [Reply to comment]

Ive shared my thoughts on this with you before but I think you handled it perfectly. S is gorgeous regardless and the example you have set will ensure that he learns to look past superficiality.

Julian@connectedmom said... [Reply to comment]

I love this post!

Your boy is beautiful and from what I've read here his personality just cracks me up! Good work mama! Can't wait to hear more about your journey!

Mama Bennie said... [Reply to comment]

You are a great mom, and I wouldn't care what my extended family thought either...he isn't their child and it isn't their concern. He is a very handsome little boy and I am sure the girls will all love him in high school, because he will be the nicest boy of course. His birthmark makes him who he is, and that is a wonderful person.

Melanie said... [Reply to comment]

I think you sound like a very amazing mother raising and equally amazing son. What an incredible roll model to us all!

Tamsin Michelle said... [Reply to comment]

Your son is BEAUTIFUL!!!!

Jenny said... [Reply to comment]

He is a beautiful child, and I think this is probably the way I'd handle it too. In the long run, who cares what some little jerk from school says? I think a mother's acceptance is MUCH more important in helping him to accept himself--and you've given him that.

Summer said... [Reply to comment]

@AshleyThank you, Ashley! I think his birthmark is beautiful too. I literally don't "see" it. It's just who he is.

Summer said... [Reply to comment]

@Kayce PearsonI hope that he grows up to be a strong man and a person who is tolerant of all differences. It's not an easy thing for any of us to live with but he really is amazing.

Summer said... [Reply to comment]

@ErinKate23I LOVE the prized goldfish story. Your brother sounds awesome! Styles used to tell people it was an Angel Kiss and that God made him that way. It was precious.

My 18mo daughter LOVES Styles, more than me I think, and it's refreshing that she, a toddler, doesn't notice his "difference". We should all be more tolerant. :)

Summer said... [Reply to comment]

@HelenAny time a medical issue is involved, I'm all for treatment but like you said, cosmetic? No thanks! Sounds like you're doing the right thing too!

Summer said... [Reply to comment]

@Amber*blush*, thank you.

Summer said... [Reply to comment]

@JennThat means so much to me, thank you. I'll let him know, it will make him feel like a superhero. :)

Summer said... [Reply to comment]

@ShawnaWe LOVE meeting other people with port wine stains. We met a SUPER attractive guy with a PWS on his face at Disney who had a beautiful girlfriend. It helps for Styles to know that he's not alone. Thanks for sharing!

Summer said... [Reply to comment]

@Mama MoAntarctica is my DREAM vacation (I'm weird, OK?). Thanks for sharing his story! It's so important for us all to push through adversity and if this birthmark is the biggest hurdle Styles has to jump then so be it.

Summer said... [Reply to comment]

@EmilyMedicine Man in Morocco? That's HILARIOUS! A friend of ours had cancer when she was a teenager and had to have grafts of skin taken from her legs. She tells people she was attacked by an alligator when they ask. Styles has a vivid imagination, I'm sure he'll come up with some fun stories now that he's been given free reign. :)

Summer said... [Reply to comment]

@The Running Knitter Thank you :) I hope he continues to be an amazing person. He is so special.

Summer said... [Reply to comment]

@CrunchyVTMommy Thanks, V. He does a good job now looking past superficiality. I could definitely learn a thing or two from him. :)

Summer said... [Reply to comment]

@Julian@connectedmom Thanks, Julian! We have had other struggles (more to come on those) but I feel like, for me at least, this has been our biggest.

Summer said... [Reply to comment]

@Mama Bennie Thanks, Mama! It's difficult to not listen to family, especially your own mother. She said just this week that he needs to "get his face fixed". Fixed?! Because there's something WRONG with it?! She's concerned that he's "up against" his brother and sister. I was unaware that siblings were involved in a beauty contest? My high school boyfriend wasn't the most attractive guy in school but holy cow he was romantic and sweet. I can only hope the same for Styles.

Summer said... [Reply to comment]

@Melanie Thanks! Being a parent is never easy. I like to think that we all do the best we can and make the decisions that we do based on the individual needs of our very individual children.

Summer said... [Reply to comment]

@Tamsin Michelle Thank you, I think so too :)

Summer said... [Reply to comment]

@Jenny I'd hate for him to be bullied but I think that the way he handles the questions goes a long way in letting people know that they can't get under his skin. He knows that he can come talk to me when he's upset and I hope that he continues to do that.

melissa joanne said... [Reply to comment]

What a beautiful post, and what wisdom from your son. Thank you for sharing his story! I'm linking to this post from my own blog.

Annicles said... [Reply to comment]

I am good friends with a man who has a PWS on his face in much the same place as Styles. His mum started the treatment for getting rid of it but in those days it was all skin grafts. As soon as he was old enough to have a say he refused to carry on. This means that his mouth is twisted up and he looks as though he is smiling all the time. I no longer see it, I imagine his wife doesn't either. He taught me when I was a teenager and he was one of the most charismatic people I ever met.
Styles sounds as though he is going to be the same.

phrynozoid said... [Reply to comment]

I love this!! He is so blessed to have such a wonderful mama...there are so many women out there who wouldn't handle this nearly as gracefully or thoughtfully as you.
I personally have always thought port wine stains were absolutely beautiful. As a child, I had a friend whose teenage sister had one covering most of her face and neck, and I remember going home and putting makeup on my face to try to give myself a beautiful birth mark like her. Still to this day, I have actually considered tattooing one on my face (I already have facial tattoos, so it wouldn't really be much of a stretch) because I just think they are so beautiful and fascinating. I have a close friend now who has a PWS over one of her eyes, and she tries to cover it with makeup. I always tell her I'll trade her. :)
I've always wanted to do a whole photography project of people with facial birth marks as well. There's just something so neat about it.

Manager to Mom said... [Reply to comment]

I think you have made wonderful decisions for, and in support of, your son. He is obviously thriving physically, mentally and emotionally. Congrats for not folding to societal pressures!

As an aside, I would like to add that I am loving the Connected Mom blog! You are a talented team of writers who write fascinating and touching posts that we moms can truly "connect" with!

Audre said... [Reply to comment]

Summer, I struggle with a disfiguring skin disorder(vitiligo) that appeared in my early teens. (As if there could be a worse time). I have tried various treatments over the years that never worked and one that literally almost killed me. I have finally come to accept the fact that there is no cure and I will live with this the rest of my life. It does and will continue to worsen, although thankfully, slowly for now.
A few years ago, I happened to end up spending the day with a young teenage boy whom I had never met before. I couldn't help but notice that he suffered from the same condition, only his was much worse than mine.
It was on this day and spending time with this boy that I came to a tremendous revelation. I started to question who in this world is in charge of deciding what is beautiful or not? I saw this boy with his skin of differing shades of color, so unlike the majority of the population, and for the first time I saw real beauty in this uniqueness. He was beautiful!
There is so much beauty in this world- SO MUCH! I refuse to allow other people to define for me what is or isn't allowed to be beautiful.
Who's to say that your son's feature is NOT beautiful? Who gets to be in charge of deciding that? I know that I will no longer give them that power. I choose to see the world- and all the beauty that is in it- with my own eyes.

Tara said... [Reply to comment]

I just love the maturity your son showed with how he handled questions about his birthmark. Every kid can be picked on about something, but strong role models teach us how to deal with it.

E Small said... [Reply to comment]

The world needs more Moms like you, Styles and your other children are extremely blessed!

Lisa said... [Reply to comment]

I love this post, in part because like Styles I also have a very noticeable mark on my body. In my case it is a scar from a burn and covers the side of my face, down my neck and shoulders to my arm. I grew up with it and it is very much a part of me. I know my mother would have liked to see me have it grafted at some point, but I wouldn't be me without it.

As a kid I would make up stories about it when people asked. My favourite was "Well, I really liked fire as a kid and didn't know any better, so I dove headfirst into a bonfire one day....".

Just wanted to give you the adult looking back perspective. There is no doubt that managing having the scar has made me more compassionate and (I like to think) developed a pretty strong self-deprecating sense of humour.

Anonymous said... [Reply to comment]

Styles is beautiful. I think I may have just found my son's older twin :) Your story has given me courage. I am proud of my son, Jasper, who will be two in February, and, like you, I don't "see" his PWS, either (it is almost identical to Styles' in size, shape, and placement, and he has beautiful, bright hair and blue eyes, too). I've been reading and soul searching, trying to determine whether or not I should look into having it removed. I feel tremendously guilty for thinking about it either way (it's who he is, why would I want to change that? on the other hand, am I cruel for subjecting him to the wrath of other people?)......but, truth be told, after I found out it wasn't causing him any problems, like the doctors thought it might, I never gave it a second thought until my mother tried to make me feel bad about it. So I guess that's my sign for not doing anything about it, right? I think, like you, it should be something I leave up to him. Thank you for your story.

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