Join the Conversation!

Please use the “Comments” feature to share your stories and ideas on this post!  I love hearing from readers.

To send me a direct message, email whathappenedtoherface@gmail.com — and just a heads-up, if you send me pictures of yourself or your child, I will assume you’re okay with me publishing them to this blog, unless you clearly state otherwise in the message.  I love being connected with others!

Posted on July 2, 2011, in 2. Join the Conversation!. Bookmark the permalink. 10 Comments.

  1. Hello. Your blog is so wonderful, and you have such a beautiful daughter and a beautiful family. My wife and I have read the whole blog.

    We have two children, a four year old boy and a 16 month old girl. Our beautiful and spunky daughter, Delphine, was born with a port wine stain on her face in a similar location as your daughter Addy. Our daughter has had 15 laser treatments so far at the Children’s Hospital of Philadelphia, but we are now slowing it down to once every 4 months and tomorrow she is having her first laser treatment with anesthesia so they can treat around her eye.

    I don’t ever remember hearing the term “port wine stain” before my daughter was born. Finding your blog and reading through it was a real bright spot in our learning process. Thank you.

    • Bob – Thank you so much! I am honored that you and your wife have taken the time to read my thoughts — I know how little time one has while raising a little boy and girl!

      Delphine! A fabulous French name, n’est-ce pas? Very lovely!

      I wanted to respond to you as soon as I could here, knowing that you’re going under anesthesia tomorrow. The “you” there is plural… 🙂 Please know that you might get a bit emotional when they put her under; that’s okay. You’re a parent. It’s what we do.

      But I’m impressed – fifteen treatments without the blissful sleep of anesthesia?? My son Clarence underwent a brief laser zapping last year for a small hemangioma on his cheek, and that was stressful — like getting zapped by lightning, over and over! It made me glad for anesthesia! (Clarence decided that he could do without the second recommended treatment; once was enough!) Your daughter (and her parents) must be wonderfully tough. 🙂

      Unlike her brother, Addy’s face has only ever been treated under anesthesia. Her stain is quite thick and it curves up around her eye, so there’s no safe way to effectively zap it while awake. Anesthesia is awesome. Remember that tomorrow. 😉

      Please feel free to hang out here, and if you ever have any questions about treatment or encounters, send them my way. I love finding other PWS parents! My email address here is whathappenedtoherface@gmail.com – feel free to contact me!

      And, before I forget, please know that your daughter can experience an “anesthesia hangover” — that is, she’ll seem normal for two or even three days, then suddenly get all weepy and fragile… Totally normal. Tell any caregivers that she might be a bit emotional, and keep extra hugs on order. 😉

      Take care!

      – Jennica

  2. Millie Buckingham

    Hi, I’ve written out three different messages and failed to send them but I will send this one! Your daughter’s confidence and smile have been the light in my life when I’m feeling low about my port wine stain (uncannily similar as mine covers also my right cheek, lip, nose and forehead slightly!). Regrettably, I have covered my birthmark with makeup since the age of 11 (starting high school- now 17) but previously felt no real qualms about my appearance; I was a confident, happy, feisty little girl. Hitting such a low of wanting facial reconstruction surgery I a few months ago, the beauty of your daughter has been my inpiration to accept myself and use my suffering as a tool for creativity and awareness. Turning 18 in May I’ve decided I won’t let something which I have no control over, determine my life and have been practicing looking people straight on and in the eye (something unthinkable less than a year ago) I am trying to diagnose my reasons for hiding part of myself and my consiquencial shame of my appearance. I am using my final a level art project to look at changing societies perceptions of physical differences. Your website and adelaide have been a huge inspiration for this. I hope to someday meet my role model!
    My sincere gratitude,
    Millie, London

    P.s. Does Adelaide have Glaucoma in her right eye due to her port wine stain? I was found to have it at 3.

    • Millie, I am Adelaide’s father. While I don’t know much about what you look like, it is clear that your personality is beaming with beauty! Jennica, my wife and the blog’s author, and I want to post more of a response, but our heads still reel from your incredible post leaving us at a loss for what to say. Thank you so much for all of your effort in getting the post up!

    • P.s. No glaucoma so far, but Addy’s doctors say that it may still develop.

    • Millie,

      As Keith mentioned, we were both so floored by your lovely insights that neither of us could really form a coherent response! I’m humbled and exhilarated to be part of you seeing your own beauty.

      Addy inspires us, too. 🙂 Parenting her, and pondering her stain, I’ve come to appreciate that every human, no matter what their appearance, struggles with their uniqueness. None among us is anatomically perfect; some simply have more obvious imperfections. Slender runway supermodels wish that they had Sofia Vergara’s curves, while Vergara-esque curvaceous babes wish they had Heidi Klum’s legs. Even the greatest beauties can point to another human’s unique features with envy.

      …Or, said a different way, any beauty can point to her own unique features with contentment. I wish more would; so few do.

      I will soon be putting up a post with all these still-drying thoughts, but before I go, I want to share with you something that occurred to me shortly after Addy was born: look at the*sweep* of her (and your) port wine stain. The way it starts in the middle, then sweeps upward as it goes toward the hairline?

      Now look again at all those makeup advertisements in magazines and on billboards. Look at what they tell you to do with your blush, your bronzer, your eyeliner, your eyeshadow, even your hair: “Sweep up” for the most flattering effect on feminine features.

      Look for “the sweep” in other places, too – the shape of a basic Venetian carnival mask, for example; it sweeps away from the eyes, out and up toward the hairline. Instant glamour.

      Everyone else needs masks, makeup and hairdos to approximate nature’s flattery; you and Addy were born with it.

  3. Hi there,

    My name is Katie, and I have a good-sized port wine stain on my leg. It’s a dark red color and blotchy, and is very often confused for a bad rash or case of poison ivy. It’s only gotten larger as I’ve gotten older, and as a kid, I got plenty of comments on it, especially during the summer when I would wear shorts. I’ve always been fairly self-conscious about it, and I just wanted to tell you that I think you’re doing a marvelous job with handling Addy’s birthmark and all of the questions and comments that it can provoke.

    Though my birthmark is definitely in a more discreet place than Addy’s, that didn’t stop all of my friends from asking about it (usually every year, because they would forget all about it before the next summer!), and it could be hard to field all of the questions that I got about it. From your posts, it seems that Addy is doing an amazing job with all of this. Kids can be so blunt, and, at times, unintentionally hurtful (although there can be some intent there, too!), so these years will be the hardest in terms of stares and comments, but it looks like she’s got it under control so far!

    Growing up, my parents mainly didn’t address the mark on my leg, and left me to form my own opinion about it. When I got old enough to ask them about it, they would respond with an “it’s a part of who you are, and you should accept it” response, which was good, but didn’t always help me with how I felt about it. Although I’ve grown to embrace what others would call a blemish, I know that this wouldn’t be the case for all kids, so thank you for handling the situation with your daughter so well. She’ll thank you for it in the future!

    Addy is such a strong, confident young lady. Tell her I said hi!

    Sincerely,
    Katie 🙂

    • Katie – thank you so much for sharing! I’m so glad to hear some of your story here. As you can tell, I love finding other port wine stain people. 🙂 Addy will be very excited to hear that you have one on your leg!

      Thank you so much for your words of encouragement! Parenting is a constant struggle with feelings of, “I’m totally doing this wrong, aren’t I?!” So to hear your words of affirmation means a lot. Thank you again! I would love to hear more of your thoughts any time here. 🙂

  4. Hello there. I want to introduce myself. My name is Anamari, and I am an old colleague and friend of Stephanie Leggett’s. We worked together at Mote Marine some time back.
    I too, like your daughter, have a port wine stain on my face, specifically my lower left jaw. It really takes up about 1/4 of my left side wrapping into my left ear, down to cover most of my chin, cheek and lowers to my neck.
    I am 34 years old and have lived an amazing life (so far!!) and I have to say that my port wine has made me be who I am today.

    I have 2 children, 2 boys ages 6 and 2 and they do not have ANY birthmarks on their bodies!! Something I wondered about when pregnant!

    And, it is now, after many years of not hearing the “whats that on her face” or better said, not selectively hearing the famous phrase, that I am hearing it all over again..and its coming from my sons’ friends, classmates, and school kids. I feel like I am re-living my youth all over again, but with much more grace of course 😉

    I, too, had laser treatment for many years as a kid, and I think this was the trauma for me, the after math,. the post recovery I dont know how treatment is nowdays but 25 plus years ago, laser treatment had just started and I remember a lot of discomfort, pain and very stressful recovery. This is what I most disliked about it and made me aware of the port wine.

    When I was a an older age in my teens, I decided I didn’t want to continue with treatment anymore, I was over it and accepted me for how I was.
    And till this day I have lived with my port wine in peace, even when my son’s litltte buddies ask, very scared what is on my face. I have come up with MANY explanations, and it helps them understand it. My son is understanding it more now too..he never saw it on me until he started to hear his friends ask.
    I tell them it is what makes me different from everyone else. And I truly believe it, because it has formed me to be who I am and how I am.
    It has been a ride for me, and I feel I am the most blessed woman in the world having what I have in my life, and I don;t think my life would have been the same without my port wine.

    I would love to offer you as much support as I can with your beautiful daughter! I can TOTALLY relate to her!!! I live in Sarasota Florida, and my door is always open if you would ever need anything. Your daughter is an angel send down from heaven, be assured of this 🙂

    Take care,
    Anamari

    • Thank you so much for your comment! (Sorry it’s taken me so long to reply here.) Both Keith and I thoroughly enjoyed it and were encouraged by it. It’s so nice to hear from someone who has lived and experienced that kind of birthmark!

      Haha, kids certainly are curious creatures! And there’s an art to answering their questions without overwhelming them with information. 🙂 We’ve tried to keep the info simple for Addy so she can answer some questions herself, especially when we’re not around.

      I’ve heard that the laser treatments can hurt without anesthesia; It’s been described to us as a rubber band snapping the face over and over again, fast. Luckily, Addy feels nothing anesthesia, and she actually finds the whole process quite enjoyable. 🙂 She keeps asking me when she can go in for another treatment!

      Thank you again for your insight; it was wonderful to hear from you!

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