Two of the big things is you’re not alone. Even if there’s no one in your town, or no one you see regularly, make sure that you realize you’re not alone, that there’s other people out there doing the same things, and secondly, is ask. Just ask about everything because it’s the only way you’re going to ever to find out. You have got to ask and you have to know you aren’t alone and do what you trust. Because if you don’t trust it, there is a reason.
Father of Natalie, child, Klippel-Trenaunay syndrome
You get the hang of it
Cooper’s just been such a blessing, and I don’t know if this condition has really had any effect on that. Just because something might look a little bit different isn’t going to make that big a deal in the scheme of things, and you can make all of this look cosmetically better, and so it’s not the end of the world. I know you can’t really say that to somebody when they’ve just had a child that’s got something wrong, but I guess ultimately that’s what I’ve figured out, it’s not the end of the world. There are people in much worse situations…. It gets better. You get the hang of it!
Mother of Cooper, child, Klippel-Trenaunay syndrome
It’s a rocky road
It’s a rocky road. It is a rocky road, but there’s good and bad. There’s some people who’re really, really severely affected and some people who’re not, so it’s a spectrum. We’re still learning about it. I would want people to know that after many years of nagging that there are now tissue samples here and that there’s research, there’s genome sequencing happening, which is really great. But it sucks. It really does because there’s not a lot of… we don’t know what we don’t know.
Mother of Riley, child, CLOVES syndrome
If he can be strong through this, surely I can
It was because of my child that I was able to stay strong because I was like, “You know what? He’s the one going through everything. If he can be strong through all of this, surely I can. If he’s the one having to face the knife and having to face the people with all of this, that I think this means as a mom I can be strong for him.” Maybe the best advice that I got when we first found out his diagnosis, I was younger then, I was a fairly quiet person, never wanted to step on anybody’s toes, but I had a mom that called me from Memphis. I had never met her, but she knew my sister and at the time my son was first diagnosed her daughter was a senior in high school, but when she was Derek’s age, she was diagnosed with an AVM. She talked to me for a couple of hours one day on the phone saying, “You know what? You are the only voice that baby has. He doesn’t know the questions to ask. He doesn’t know when to tell them, hey, enough is enough. You are the mom, and if you don’t speak up for him, no one else will because that’s your job.” So she really gave me the strength to be able to, if I thought something wasn’t right, just speak up and not worry about offending or not worry about the doctor being upset because I was second-guessing them. That was the best advice I had been given.
Mother of Derek, child, Kaposiform hemangioendothelioma
Mother of Jack, child, Cutaneovisceral angiomatosis with thrombocytopenia
It’s not the end of the world
Mom: It’s not the end of the world. It’s not going to be easy, there’s going to be days when all you can do is sit in a closet and cry, but for the most you just deal with it. I mean, you can either sit and cry about it all the time or you can choose to move forward… There’s bad times, but there’s also a lot of good things that have happened to us because of it. Like we’ve met a lot of people, we’ve realized some friends aren’t worth the trouble you put into them, because they just don’t care. Then others go out of their way and shock you, friends that you think are just acquaintances turn out to be people that are there for you no matter what. And family is the same way even, you find out who really cares.
Dad: That’s for sure.
Family of Michael, child, Blue rubber bleb nevus syndrome
There’s not a handbook for how to handle this
It sounds corny, but every step was a journey… I could sit there and say, “I wish that we came here first and got in with the whole team right from the beginning,” but just not to feel guilty about your choices too because I did carry that for a while. At one point we had a surgery and she underwent a lot and she was very sick after. She had a really bad year the year after and one doctor said to do it, one doctor said not to do it, and you carry that guilt around thinking, “Oh my gosh, I just put my kid and did this, I signed consent, said to do it,” but if you’re making the choices for the right reasons not to feel guilty about them, that there’s no guarantees with stuff. You try to follow your gut and research as best as possible with the kids, there’s definitely not a handbook to this, that’s for sure. There’s not a handbook to parenting to begin with, but there’s not a handbook for how to handle this.
Mother of Ashley, teenager, Lymphatic malformation