I started having bigger choices
Riley: As I get older, I’ve definitely been included more in making decisions. When I was younger I didn’t really know much about it so I couldn’t make that many decisions. Now I’m making some decisions but some decisions are still left to the grownups… I think it was when I was around 7. I didn’t know as much about it when I was 6.
Mom: So when you were littler, like before 7, we would do things like, “So, Riley, do you want to take your medicine now or do you want to take it after breakfast?” That would be us offering you choices. Not great choices, but…
Riley: Yeah, I’m thinking like, when I was 7 I started having bigger choices, and I think that was helpful.
Riley, child, and mother, CLOVES syndrome
I feel better when I’m most involved in my health care
I feel better when I’m most involved in my health care. I certainly feel that my parents made very good decisions for me throughout my childhood but there’s something to be said for deciding when you’re going to have your surgeries, how aggressive you’re going to be and how that fits in to your life. Because certainly, I feel that only the person living with the condition can truly know how it affects them. Again, I have very empathetic parents; I have a drain in currently from my last surgery, and they always ask me how it’s going and are concerned about its progress, but it’s the person who has the drain that knows that like, 9 weeks is a long time to have a drain and you really need to understand the trade-offs.
Sarah, young adult, Klippel-Trenaunay syndrome
There’s always been some consulting process
[My parents] certainly let me make my own decisions, but I feel that there’s always been some consulting process about what my opinion is on these things. They’ve had to overrule me at times when I was younger and what I was feeling maybe wasn’t the best for me. I feel that they’ve always tried to include me as much as they can… More recently, I was kind of unnerved when I found out all that information before my last surgery, about the ICU and the multiple drains, and both of my parents were totally fine. They were like “if this makes you feel uncomfortable, even though the surgery is tomorrow, you don’t have to go through with it.” I think it helps that I ended up coming to the decision on my own. Like yes, those things bother me, but I really should have the surgery, and I think that helps with your recovery, because you don’t feel like you were forced into something. You tend to be more proactive when you are an active participant in the first place.
Sarah, young adult, Klippel-Trenaunay syndrome
I’ve always had a role in it
Joe: I think I’ve always had a role in my health. I think it probably became easier for me to take a role in it when I started understanding more of what was happening because when I was younger, a doctor’s appointment was a doctor’s appointment whether I had to fly, drive, or swim.
Mom: We were very happy when he became old enough to start making some of his own decisions because we’ve made a lot for him.
Joe: I would say around… nine. Maybe even ten.
Mom: Maybe even younger. It depended, a lot of things that we’ve had to do we had very little choice.
Joe: What would happen before I started learning what the doctors were actually saying would be more of a translation thing after the appointment, like, “Wait a minute… what?” You know, and that’s when I’d bet told what was going to happen kind of in child language I could understand.
Mom: And why. Even when he was an infant in the NICU, we would tell him what the plan was, because we’ve always felt like he could understand at some point that we were doing the best we could.
Joe, pre-teen, and mother, Reticular hemangioma
I was growing up and this was in my hands now
I needed that guidance and thank God for them, my foster family, they were very good with that. Of course, they always said that it was up to me in the end, but they’d explain it to me again because at times I just didn’t even pay attention, I didn’t understand what was being said. Then later on, when I was like, 18, I started going to the clinic by myself and making the decisions by myself. That felt good because I was growing up and this was in my hands now, I couldn’t always have somebody hold my hand.
Lena, young adult, Kaposiform lymphangiomatosis
I bet it’s a lot easier for my parents now
Joe: I bet it’s a lot easier for my parents now. I mean they still need to plan everything, but…
Mom: He has a plastic surgery that’s going to be coming in his future, and I want him to completely decide on those pieces. He is able to effectively communicate where his pains more accurately and precise with the doctors, it is so much better than me or his father telling them.
Joe: Personally, I’m starting to like it more because like she said, I’m able to communicate better and I’m able to figure out what’s actually going to be happening. I think it’s also probably helped mature me more at the doctor’s. Once I started understanding more, I was able to communicate at the right times and know what was happening and when was the right time to use some humor in the talk, and when was the right time to—I’m still not that good at deciding when was the right time to listen, but we’ll say listen better.
Joe, pre-teen, and mother, Reticular hemangioma