I can’t say that our life is more of a challenge
We had one child, and these twins came into our life, and our life has just completely, drastically, 100% changed. I can’t say that our life is more of a challenge because Gabriela has this. The only challenges really that we ever encounter is when she has pain; there’s no other challenge that we have. It’s not like Gabriela can’t walk or it’s not as if she can’t ride a bike or it’s not as if she can’t climb or it’s not as if she’s wheelchair-bound, so there’s nothing about our life that’s difficult except for the fact that she has pain every day, and certainly, I attribute this to the procedures.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
Our family vacations have been going to Boston
Everything just takes more planning. Whatever trip or whatever activity you’re going to do, there are some extra things to take into account, be it the walking and the wheelchair or the pumps. Really our family vacations have been going to Boston, because that’s where we need to be, and so a lot of times we do some things while we’re there, but that is our vacation. Not only getting her taken care of, that’s also been our major vacation in many cases.
Father of Natalie, child, Klippel-Trenaunay syndrome
It’s our normal
It is challenging! Absolutely. It’s funny because we just kind of do it now. We have to because it’s our normal, but when we have to stop, my husband and I went on a trip for like 5 days, which is the longest I think we’ve ever been away. Prepping for that trip, and preparing all the alternate caregivers for that was really, like it’s really challenging. Even people who are close to us, and who know what we do, and who know Riley really well, it’s still, it’s a lot of work.
Mother of Riley, child, CLOVES syndrome
The only daily challenges
The only daily challenges now that she’s on that propranolol, that they change as she grows older and her weight changes. How they administer it or how they like her taking it is during the day with meals. When she’s in daycare, making sure that that person gives her that dose is about the only thing that’s most challenging, because it’s happened that it wasn’t given and trying to say, “hey, she needs this medicine regardless of anything else.”
Father of Charlotte, infant, Lymphatic malformation and high-flow vascular lesion
Am I to blame?
I’m used to [surgeries and procedures] now, but in the beginning it was very hard for me to deal with. I had a really hard time adjusting because you always ask yourself, like, what did I do wrong? You always question yourself. Is it something that I did while I was pregnant? Am I to blame? I blame myself for it, and I’ve had to deal with that a long time. Even though somebody said, it’s not your fault. I mean, I ask them the same questions every time I come up. Just hearing it over and over again. To this day, I still ask why, but I’m sure I’ll never get an answer.
Mother of Emma, child, Venous malformation
Getting through tasks can be difficult sometimes
He tends to, I think, get frustrated a lot easier than his siblings do; I think he has a little more problems dealing with his anger and how he shows his anger, and we’re trying to get him to use more words rather than actions. He does tend to yell or hit, things like that. So that’s kind of what we’re working on with the in-home treatment. And then just regular routine-type stuff, like getting him to shower; he kind of puts that off, and sometimes it’s due to the fact that he’s hesitant because he’s in pain; other times it’s just that he doesn’t feel like doing it. We’re having trouble getting him to kind of just get through the daily routine and follow instructions. Get through tasks can be difficult sometimes.
Mother of Liam, child, Glomuvenous malformation
There is no cure
The biggest challenge is just that there is no cure, and you have to go and have surgery. This year has been kind of normal for her, which is awesome; she’s had an actual break from school, and she didn’t have to have a surgery during it. To have so many surgeries, all the time, it has been really difficult. Because with those bandages, I don’t get to be the mom that’s always her safe place, I have to be the mom and doctor. And that hurts, to always have to hurt her, clean her wounds, and it is just not fun. She is great at it though, she is tough and has the high tolerance for pain, but you just want to be that sweet mom that is always good to her and never hurts her but cleaning the wounds hurts her.
Mother of Annabelle, child, Lymphatic malformation
His situation is threatening at any minute
The bleeding can occur spontaneously, that’s the main thing. His situation is threatening; at any minute, he can bleed because he still has some [venous malformation].The surgeon took what he could, but it’s very big and it’s not only on the outside on the skin but also it goes deeper… He gets tired because of this, so he cannot walk for very long distances. He can walk but he gets tired, so like if we want to go walking outside or in the mall, I have a wheelchair for him. Maybe he can walk for a few steps, “Mom, I’m getting tired,” so he comes back. Plus he gets shots since 2006, enoxaparin shots twice a day to help prevent blood clots and also to help correct some of the problems with his blood levels. He doesn’t like the shots; he cries., but he’s realizing now that those shots are saving his life. They’re blood thinners, it’s important so even if he doesn’t like it and he cries sometimes, he has no choice. So he used to cry more; now he understands it, he can handle a little bit more pressure.
Mother of Sammy, pre-teen, Venous malformation