We need to get used to it now
I don’t take him out to too much because he does get sick very easily. But when we are around, it’s mostly little kids who say things. They don’t understand why is this, why does this… One little girl in the neighborhood said, “Oh, why is he so fat?” He’s not fat, he’s just, you know. A lot of people don’t understand, or stare, things like that…. I think that’s just normal. Everybody does it, I think. You see something, you don’t even mean to, but we’re going to have to deal with it forever, so we need to get used to it now. There’s not much we can do about it.
Mother of JT, toddler, CLOVES syndrome
They don’t think about hurting someone’s feelings
Mom: One time, she was getting the shots in her arms, and the shots make her bruise because it’s blood thinner, and so somebody just looked at me and, “What happened to her arms?” You know, like I was hitting her or something. Now she gets the shots on the sides and she has bruises all in here, but I just say, “She takes blood thinners.” I just explain, I said, “She has a vascular syndrome. She was born this way.” I don’t let it bother me. At first, I did, but I just try to understand that people are—
Caitlin: They’re curious.
Mom: They’re curious and sometimes they’re just a little ignorant, and they don’t have manners! [laughs] I don’t know. They just don’t think about hurting someone’s feelings.
Caitlin, pre-teen, and mother, Klippel-Trenaunay syndrome
It’s a birthmark and that’s it
She also has a swollen lip, it’s from the hemangiomas in her lip. That’s not something that we’re going to address right away, but kids notice it, parents notice it; they also notice the birthmark looking thing. She told somebody to mind their own business the other day, so no, she hasn’t been bothered too much about it. I think once she goes to school, if it’s noticeable she might have problems, but right now there’s nothing really… they notice it, they want to know what it is, and then pretty much that’s it. She tells them it’s a birthmark. My other daughter tells kids for her too, she’s like “It’s a birthmark” and that’s it.
Mother of Anne, child, Infantile hemangioma, PHACES association
People always gawk, they stare
In the beginning we had one lady come up to my wife and wanted to call a social worker because it’s so bad it looks like she’d been beaten in the face. One time, when we went to emergency room because she had really bad bleeding, and literally it was all over her, it was all over me; I was getting questioned by the person taking the information at the emergency room. I had to call the ambulance and convince them wholeheartedly at 2:00 in the morning that she has an AVM and I had to show documentation before they would even believe me.
But to this day, people always gawk, they stare. There are always questions, and when they look at her, they always look at me, sometimes, but to me, it doesn’t matter. Just asking makes it a little bit easier too, we just let everybody know, and usually when we’re in public, she plays with a little bit older kids, they always ask, and we just tell them it’s a birthmark. You know, “What’s wrong with her face?” Because then people are afraid to play with her or watch her fall or something like that like something bad is going to happen.
Father of Charlotte, toddler, Lymphatic malformation and high-flow vascular lesion
You find yourself avoiding certain situations
He’s still so adorably clueless, but I’ve had, more than I can count, times where you’re at the mall and you can tell that there’s a little boy staring or a little girl staring or kids maybe a little bit older laughing. The worst experience I ever had – and thank goodness it only happened once – was that a little boy ran away scared, screaming, like really scared. That was awful, but it’s those types of situations that are definitely the worst. It’s always this age group of, I would say between 5 and 7 where they really tend to notice those physical differences, but they haven’t learned that filter yet. The 8 year olds are looking up at their mom and kind of doing that what’s wrong type of thing, but would never verbalize it.
But the 5 to 7 year olds, they’ll say, like, “My God, that kid has a chubby face.” And they have no idea that they’re being hurtful, so that’s really, really difficult. You find yourself avoiding it almost. If I’m in Target, I’m walking down the aisle, I actually may come back to the toilet paper aisle if there’s a 5 year old down that aisle. You find yourself avoiding certain situations… [To help in the future] what I’ve been really trying to do is build up his self-esteem so much. It’s just a lot of doing that, trying to raise someone that’s really strong and that can stick up for himself, and that still feels confident. I don’t know what I’ll do once I have to cross that bridge. That I know for sure will be the most difficult thing for me. I can deal with the medical stuff; it’s the emotional stuff that’s really hard.
Mother of Matt, child, Lymphatic malformation
Nothing really wrong with looking different
She would never bring it up until after we were away from that person. She might just be like, “Well, what was that person talking about, what was that person asking about?” And then we would just tell her, they were asking about her special mark. For the most part she kind of lets it go and be at peace with that, but I know it’s definitely going to get hard the older the kids get… I know I should probably get some books and read up on how I should be dealing with it but I think we’re just going to keep going with what we’re doing, try to build her self-esteem, try to help her realize that there’s nothing really wrong with looking different, you just happen to look different. It might work, it might not work, only really time will tell.
Mother of Grace, child, Sinus pericranii