She’s very reserved…When she was little, she was very outgoing. She would talk to anybody. But now she also sees when she approaches kids, kids don’t want to talk to her. They look at her arm and they walk away. There are some kids that are good. One of her close friends that she has accepts her for who she is and takes her how she is because she has a very strong personality. She’s very outgoing when you get to know her, and she’s very strong-headed.
Mother of Emma, child, Venous malformation
Kids don’t understand why
One thing the school did do for us is at one time, Natalie had only told one person at school about her KT and explained it and opened up to that one best friend. So we made the request that as they go up in grade they shuffle the kids around, that those two stay together to support Natalie. There are 150 kids in each grade so they shuffled them quite a bit, and her friend has been able to stay with her, I think having some support there is probably what helped her give that presentation to the rest of the class. But it definitely comes up, because again when she walks slow, kids don’t understand why and so they’ll say some mean things. She’s had some really good friends that have stood up for her, and that helps, but again, people don’t understand what’s going on, why she’s walking so slow, you know, “That’s not running, get out of the way, you can’t skip or jump,” so that’s hard on her.
Father of Natalie, child, Klippel-Trenaunay syndrome
They just see her
It has been easier now, especially with me going to class with her and explaining it to them. It helps, because you know they have questions and stuff, and she’s just like, “Oh I don’t care about that, let’s just play.” So they play and they just see her. They don’t see the boo-boos. Because her personality is so large and they just don’t see it on her, it’s awesome. We’re in a small town, so kids have grown up with her. I have not sheltered her at all. She’s been in dance ever since she was 3. After her surgery she had a Jackson-Pratt drains on her side, I would just pin them up into her little wings in her leotard and let her do her recital. I just haven’t sheltered her so she doesn’t have any problems socializing. She is just a fun-loving, outgoing child that she makes friends so easy. She has just always had such a great attitude.
Mother of Annabelle, child, Lymphatic malformation
They don’t even realize anymore
Ashley: My friends always tell me that they look past it, they don’t even realize anymore.
Mom: Usually suctioning, all that kind of stuff, we don’t do in front of other people; they know she gets suctioned, but we don’t do it in front of them. I think her one best bud knows the most. She’s more curious, I think, to know exactly what they’re doing to her here while she’s admitted, that kind of stuff. I think all this is sometimes too much for people to ask or want to know, I guess. Especially at that age, it’s almost too much for them to handle or to comprehend that something can actually go wrong. So I think that that’s maybe just at the age where they avoid it.
Ashley, teenager, and mother, Lymphatic malformation