She has a right to be a kid
We make sure she knows that she’s important. She’s special. We remind her of all the things that she can do, all the things that she has done, and number one, above and beyond, that there are people that care about her. And that she understands she feels unhappy sometimes, that’s not a wrong feeling, you acknowledge it and take it. We all have days we’re not happy but yeah, she has more reason for that, I guess, legitimate reason for that. The other thing is, with being at the hospital and seeing other kids, she’s very aware that there are other people out there with issues. And also I think she’s aware that some of those are probably worse than Klippel-Trenaunay. So usually she doesn’t stay down on that very long, and that’s normally a sign that she’s in a little more pain that day, or struggling a little bit more with moving or something; something has brought it to her attention more than usual. Again, it’s trying to figure out what’s going on but then reinforcing that she’s important, she’s special, and she’s loved. She has a right to be a kid.
Father of Natalie, child, Klippel-Trenaunay syndrome
She still doesn’t want to be the one that’s different
Mom: She doesn’t like to take her stockings off. Your friends come over to sleep over…
Caitlin: I don’t want to take my stockings off because I don’t want to put them on in the morning.
Mom: Well, you don’t want them to see your legs; you don’t want them to see your stockings even …. She has a port wine stain on her lower back, and if she would lean up, you could see it, and the kids would ask her, “What is that on your back?” She didn’t want people to see that, and she doesn’t even want her close friends to see her port wine stain, right?
Caitlin: Yeah.
Mom: Or your feet. She does have issues with that, and I understand, ok, you don’t want people to just stare at you, but at the same time I want her to feel comfortable. Who cares what they think? Who cares what they say? But still, it’s just sort of keeping a balance. I mean, I don’t want to throw her out there like, “you have to go out there with no shoes on”, and then when she doesn’t want to… Some people would say, “well, don’t put her stockings on at all. Make her friends see her and look at her.” But then she doesn’t want to do that. She’s comfortable and she has a good self-esteem, she still doesn’t want to be the one that’s different, I guess. She wants to be just like everyone else as much as she can.
Caitlin, pre-teen, and mother, Klippel-Trenaunay syndrome
She wishes she didn’t have KT
Sometimes she doesn’t like to talk about what her legs look like with other people, and she doesn’t like the fact that she is slower at school. Anywhere really, but at school is where she notices it, among the other kids. When she has to walk in line, it’s always an issue that wherever she is, she’s moving a little bit slower. But I think some image issues would be the biggest things, and she has said she wishes she didn’t have KT because then she wouldn’t have to wear her tights, she wouldn’t have to wear her boots, she wouldn’t have to walk slowly. She does have times like that.
Father of Natalie, child, Klippel-Trenaunay syndrome
“I don’t like this anymore”
We ended up having another daughter and she doesn’t have anything, so when they have taken pictures together, Charlotte’s looking at the picture and saying “I don’t like this anymore,” when she’s in pictures with her sister. Or she’ll grab her ear. The most concentrated areas are now just her right ear and the outside corner of her right lip, and she keeps grabbing at it, pulling on it; when she kind of gets dazed playing with it, you know she’s bothered by it. I ask her, “Stop doing it,” she says, “I don’t want this anymore.” Or she’ll grab her ear, like the other day, she goes, “I don’t like this.” Or when I blow dry her hair, she’s taking my wife’s makeup and trying to put lipstick on there to make it go away because this way everybody doesn’t look at it. That’s how she says it, “Everyone looks at my lip.” So she’s starting to—she’s not showing that she’s bothered by it, but she’s very conscious of it.
Father of Charlotte, toddler, Lymphatic malformation and high-flow vascular lesion
How will that affect his self-image?
They had told us early on when he goes through a growth spurt when he’s a teenager that it could get much worse. And they’re telling us that’s still the case so we’re very concerned about at that age the amount of surgery he would require, and just how will that affect his self-image? Is he going to be self-conscious because of people noticing? Some people have even said, “Oh my God! He hurt his leg!” That’s when you have to go to that kind of simple explanation, “No, he has a birth defect,” or, “We’re aware of it.” We have concerns because teenagers are much more concerned about their image than younger children. He may just be the teenager who wants to wear pants all the time because he doesn’t want anyone to notice it, but we don’t want it to hold him back from participating in sports if he is interested also. That’s why we’re very concerned about trying to find a way to protect that area so he can participate.
Mother of Liam, child, Glomuvenous malformation
“I want to feel normal”
[Before his surgery] I started having problems with his clothes… and his bumps started growing so big, it was so noticeable. He started feeling down because everyone especially kids at school keep talking to him and ask him, “What is this? How do you have it and why?” and all this stuff, and he starts feeling embarrassed. Plus he was limited; he can’t do PE, he can’t run, play on slides, all that, so that’s affecting him emotionally too. “Mom, why am I this, why, I want to feel normal, I want to play, I want to go on a slide, run…” [Since his surgery] emotionally, he’s feeling better, although he’s restricted from doing a lot of things still because they’re afraid of him bumping into kids or into stuff, and he could bleed because that’s the main thing with him, but I mean, he’s doing better. He can walk a little bit more because he was getting so tired. It’s the weight, you know, it’s not only blood, it was like 10 pounds extra on you. So he’s doing a lot better, thank God.
Mother of Sammy, pre-teen, Venous malformation
Nobody looks the same, everybody’s different
We pretty much try a lot to instill that nobody looks the same, everybody’s different. People have different skin colors, people are shorter, people are taller. And we just try to instill that not everyone looks the same and she has a very special mark that no one really has that a lot of people that haven’t seen it before and so that’s why they’re asking about it. We’ve been trying to kind of prepare her for school as some people probably may be mean about it in the coming years.
Mother of Grace, child, Sinus pericranii