We’re definitely more proactive
I think we were really lucky to stumble across the right person that was able to tell us what it was and get us started. I think if we would have known how much we had to advocate with doctors and with medical things, I don’t know if things would have happened faster but we’re definitely more proactive in any situation now than we were then. Part of that is because we have educated ourselves I think, but part of that is the children can’t speak for themselves so the only person that speaks for them is you. And so I think the idea that you need to be that way would have been nice to know then.
Father of Natalie, child, Klippel-Trenaunay syndrome
You’ve got to be the advocate for your child today
I would say just educate yourself, really understand what the condition is, what the condition means, and always get second opinions… If you’re not comfortable with the doctor’s decision, there’s always other doctors out there and other people to get in touch with, and don’t be afraid to pick up the phone or get on the internet and do some research. You’ve got to be the advocate for your child today.
Father of Erin, child, Klippel-Trenaunay syndrome
Advice for other families
I’d say trust your gut, be an advocate for your kid. I think one of the things with chronic or long term stuff is developing really collaborative long term relationships with the providers. I think that’s been hugely beneficial to us, that we have this team of medical people who know her history, know how complex she is, and are really really responsible to us. and we’re also very, it’s a two way street, so that’s been really great.
Mother of Riley, child, CLOVES syndrome
It’s really a balance
I’m all about the child advocacy, in that you’re the advocate for your child. You’re the one that knows them best. But then also, I might be a little bit less that way, maybe just because of my experiences. A lot of the times, I might say exactly what I feel, but then at the end of the day I’m going to trust what the specialists are saying. I think there’s that fine line between being an advocate and trusting the people that are the skilled people around you. So I think it’s really a balance.
Mother of Matt, child, Lymphatic malformation
Just keep talking and asking questions
Jake: There will be hard times, but you just have to get through them.
Mom: I mean, we learned as we went. Our doctor told us as much as he could, we were very well informed. I would just tell parents to just be an advocate for their child. Don’t be afraid to speak up, because we are all intimidated by doctors, they know what they are talking about, but the parents have a lot of input and the child has a lot of input. Just keep talking and asking questions.
Jake, teenager, and his mother, Lymphatic malformation
You need to be able to advocate for them
A big thing for us was just understanding exactly what was going on, and really pressuring the doctors, even if you have to ask the same question 50 times to get an answer that you understand exactly what’s going on. Don’t be afraid to speak up, don’t be afraid to ask. Even before a procedure, after a procedure, if you think something’s not right don’t just wait for a doctor or a nurse or something to come in and see if they notice it. It’s your child, and you need to be able to advocate for them, especially if they’re younger. You need to be able to step up and be their voice because they can’t really do it themselves.
We really watched her and we knew if she was acting slightly different. She would never really tell us that she was in pain, she would just kind of be very quiet and not really say anything, where some kids might be screaming and hollering. For the most part when she got really quiet and didn’t want to talk or didn’t want to color or anything then we knew she was in pain and we would ask for pain meds. So really, you have to cue in to what your child’s little cues might be and sometimes doctors aren’t always right. You know your kid better than some of the doctors so if you feel something’s not right speak up and just always ask questions. If you don’t understand something, don’t just sit there and not understand. It took us quite a while to really understand exactly what was going on and what we needed to do and know what exactly was going to happen, and once we finally did it made us feel a lot better.
Mother of Grace, child, Sinus pericranii