She does everything a normal kid does
Dad: We discuss her health with her. She’s asked us why and she does have some things, but if she wants to do something, she does it.
Mom: She danced for three years, she now doesn’t want to do it, she wants to do something else.
Dad: She rides her scooter up and down the street with us.
Mom: And in the house. [laughs]
Dad: She does everything a normal kid does, and we don’t hold her back for it.
Mom: Anything she wants to try, we let her.
Parents of Erin, child, Klippel-Trenaunay syndrome
We talk about it daily in some form or another
I’d say we have conversations probably every day with something about her health. Whether it’s how are your legs feeling, trying to keep her motivated and moving, because she feels better the more she exercises. Overdoing it is an issue, but if you didn’t get her to move, she would spend a lot more time being sedentary and that isn’t good for her. She has physical therapy once a week so we talk about that and do those exercises. We talk about it daily in one form or another.
Father of Natalie, child, Klippel-Trenaunay syndrome
It doesn’t define who she is
We talk about her health all the time because it’s always there, and it’s annoying to her, and I get that. I think it just comes up because it’s always around, but I think the tricky line is that it doesn’t define her, and it doesn’t define who she is, and that’s something that we’re working on… I think [we talked about it] way less when she was younger because she didn’t really get it, but now as she has more questions and as her brother has more questions—a lot of times it’s in the context of a family dinner or when we’re all together, it’ll come up. But I think it’s probably more now than it used to be, and the other piece to that is that she’s a more active participant in the decision-making and the planning that goes along with all that.
Mother of Riley, child, CLOVES syndrome
He is not comfortable discussing is
We try to talk to Diego about his health frequently, but he is not comfortable discussing it most of the time. He will not let us look at his back and torso to determine if things are getting worse. Over time, this has gotten worse.
Mother of Diego, teenager, CLOVES syndrome
How is that conversation going to go
He hasn’t asked about his health, and I was going to wait until he started to show a little more interest in it, because he still doesn’t know that he looks different, or at least he doesn’t vocalize that…. The worst part is that, for me, I feel like the surgical piece and the medical piece, I’m really comfortable with. I really can make it through, I’m strong, I trust everyone around me, I feel like he’s with the best doctors so I feel a lot of trust there. But the most difficult piece is Matt emotionally. How is he going to be affected when he goes to school or how is that conversation going to go when he has to ask me, “Why do I look different? Why can’t I look like Nicholas? Why is that kid staring at me? Why did he say that?” That type of stuff is, by far, the most difficult for me.
Mother of Matt, child, Lymphatic malformation
There’s nothing that she can do any different
[Her health] is a subject we don’t really talk about. We’ve explained it to her, but the minute you talk about her hand, she kind of just shuts down, she doesn’t want to talk about it. But we talk about it, we try to, and I’ve explained to her that this is something she’s been born with and it’s nothing different than somebody having something else, a different disease or whatever you want to call it. You just kind of take it as if that’s her hand and she has to deal with it. There’s nothing that she can do any different.
Mother of Emma, child, Venous malformation
That was really helpful, meeting an adult with the same disease
I think we talk about her future health, I don’t want to say often, but I think she’s pretty aware of at least what the next couple years will be like. We met with a medical student here over the summer that has the same disease. They’re Facebook pals now, but that was really helpful, meeting an adult with the same disease. He told Ashley, “You can do anything. I’m going to be a doctor, I can do anything.” So I think we’ve talked about those aspects about health, saying that she can go to college, she can get a job. Long-term, she knows that it’s what it is, we’re trying our best but there’s no guarantees. There’s not like some great treatment out there, but if things don’t improve you can still do what you want to do.
Mother of Ashley, teenager, Lymphatic malformation