It’s something that they’ve never seen before
She took swimming lessons this summer. She doesn’t swim with her compression stocking, so I took her compression stocking off, and there were some kids that were looking at her and they did notice her leg. I mean, her leg is definitely noticeably bigger; you can’t conceal that, and they did make some comments about it, but she didn’t notice. She’s still too little to even notice that. She can’t pick up on those types of social cues yet, she just can’t, but I did and it was bothersome, it’s bothersome to me. I have to remember that they’re also kids, and it’s something that they’ve never seen before. I don’t want to say it was social ridicule, that’s not what it was, it was just kind of social awareness about a difference in her, and it was somewhat bothersome. Certainly, I will try to control that emotional feeling that I have about that, especially around Gabriela because I don’t want her to be emotionally defensive. So I think there’re some things that we’re going to have to address and work through throughout her life.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
With shorts on other people do stare
Mom: With shorts on other people do stare. Mostly children, adults at least typically try to look like they’re not staring, have a little bit of decency, but kids… I can see people look at him when he has on shorts. If he has on pants, they wouldn’t notice I don’t think.
Interviewer: What do you do in those situations?
Mom: With just the staring, I would not do anything. If somebody asked, “what’s wrong with him?” I’d just tell them, he was born with a rare genetic malformation of his leg. I’d just tell them if they asked, and most people have enough sense not to be rude for the most part.
Mother of Cooper, child, Klippel-Trenaunay syndrome
It’s better than staring
Dad: I think [issues in public are] more with parents than children, to be honest with you, and we’ve had a couple of incidents. In the very beginning I think it bothered my wife quite a bit, and I just said if someone really is being obnoxious about it, just ask them if they want to know what’s wrong and you’ll be glad to tell them. It’s better than staring, you know?
Mom: Staring and making fun of it is not going to get anywhere, but if you ask me what it is, I have no problem.
Dad: But I think in the very beginning it was a little difficult because you get kind of the looks that say, “Oh my God, that girl is a year old, two years old, and she’s got a cast on her leg, what did they do to her?” And you don’t really know why it’s that big and why it has a sock on it, so you’re going to get some of those looks, but you kind of learn to just go with the flow and if somebody wants to ask us what’s wrong, I have no problem trying to educate them.
Parents of Erin, child, Klippel-Trenaunay syndrome
That wasn’t the way we were going to do things
We had one time where I was in a store, and I was holding him, he wasn’t in a prosthetic, he was just an infant, and had this woman following me around and I actually handled that very poorly. After a while, I just said, “What the hell are you looking at?” basically, and I walked out of the store and I looked at Joe, and I’m said, “You know what? That is no way to handle it.” I handled it poorly, and so from that point on we really just tried to handle everything with kindness and humor. We just had to know that we’re going to stand out, and learn to be okay with that. That’s what it is, and I didn’t want him to have that chip. I mean if we had it, he certainly would get it and there’s no reason to have it.
Mother of Joe, pre-teen, Reticular hemangioma
People stare
A lot of staring. The problem with where we live is it’s so hot that her hand swells even more. So now you’re looking at a child with a hand that’s two or three times the size of her regular arm—so yeah, people stare. We have adults pull kids away when we’re on the playground because they don’t want their child playing with Emma, we’ve had to deal with that. Parents don’t want to talk to us. Kids don’t want to talk to you, and they say mean stuff, so it’s been hard… At first I used to get really upset, but now I’m at the point where if an adult can’t really behave, I can’t really get mad at the child because the parent’s kind of supposed to explain to them that it’s not really nice. Usually now, I walk away. I don’t like the confrontation because Emma doesn’t like it, she gets upset. Unless it escalates, then, yeah, I’ll say something, but other than that, I kind of just walk away from the situation right now.
Mother of Emma, child, Venous malformation
I think he does a good job of trying to cope with it
In the wintertime it’s not as noticeable because he’s wearing long pants, but in the summertime it is noticeable that he has the malformation on his leg. Liam tells us that sometimes he needs to explain to his friends or somebody was making fun of him because he was wearing a slipper. He told us that he told the child that he had a little leg and he had to have surgery so he can’t wear his regular shoe – so I think he does a good job of trying to cope with it. I wouldn’t say it comes up very frequently but frequently enough that it has affected his emotions because sometimes he might get upset if someone does say something or ask him about it. He’s had to use a wheelchair in school after surgery and things like that. I think the school does a pretty good job of educating the other students on people with disabilities or people who are different.
Mother of Liam, child, Glomuvenous malformation