I think my wife and I lean on each other quite a bit. We keep telling each other this is to help her out, and we’ve had really good results from all the procedures. So I think reminding each other of that is a huge benefit, and we do try to both be present at most things, just because we hear different things. Putting the two heads together is a definite benefit, rather than having one person there and one person somewhere else that they don’t hear everything.
Father of Natalie, child, Klippel-Trenaunay syndrome
I know more about medical things than I ever thought I would
[It’s hard], us not all being able to be together. The kids don’t notice any differences, everybody’s used to it by now. We can’t always be around each other, and they know that my time usually gets taken up by coming here and being with him, whereas last year his father was the one that was out of work at the time, so he was the one here all the time. It stinks because we can’t always be normal and live normally….
The younger ones are still young, and my step-daughter just started living with us 6 months ago, so she’s kind of used to it at this point. My son, I think he’s happy to get a break. He has different rules for a week at a time here and there, so I think he sometimes actually likes it. He gets away with more… I definitely don’t have a spare minute in my day, that’s for sure. There’s definitely not a spare minute, there’s plenty to do. I know more about medical things than I ever thought I would.
Mother of JT, toddler, CLOVES syndrome
Her siblings sometimes tell me that their leg hurts
Her siblings sometimes tell me that their leg hurts. We have a two-story house, so sometimes I have to carry Gabriela up the stairs if her leg hurts. If she tells me “My leg hurts” and it’s very noticeable that she just can’t make it up the stairs because her leg is hurting, I’ll have to carry her sometimes, but her sisters have tried to, of course, take advantage of the situation for themselves. They tell me also that their leg is hurting and they want me to carry them up the stairs. But really there’s no favoritism between the three of them. My husband and I have really made a conscious effort to try to raise them equally. Nobody has a problem in this house. We’re really trying to just have this blanketed approach, everybody’s the same here, and that’s been very effective. It’s part of the day-to-day life. [Her siblings] certainly tell her that her leg is bigger, and she knows it, and like I said, we talk very openly about it; nothing’s going to be concealed. It’s nothing that I want anybody to feel shameful about, but this is just part of our life. Gabriela has a bigger leg, and we’re trying to do everything in our power to make it look as normal as possible and for us to just have normal lives.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
We’re a team
Mom: Well, I think we probably overall raised Joe a little bit differently than we would have if he wouldn’t have started out with medical issues, but I think it’s made us stronger, it makes us a closer family unit.
Joe: Better relationship.
Mom: We’re a team. We’re all a team, and we’re just all there for each other whenever we need it. It’s not always Joe. Sometimes his sister needs something, sometimes dad needs something, sometimes I need something, and we all just kind of… we play for the same team.
Joe, pre-teen, and mother, Reticular hemangioma
You just do the best you can
Our family and friends have been very supportive. I think that all of the kids, they’ve been at the hospital a lot, and even though Jack has been sick, we have seen kids that have been in much worse shape. I think it provides them with a greater perspective and a type of empathy for other people that you wouldn’t necessarily have, because their life experiences have been completely different. They’ve woken up in the morning, and during the night there was some type of medical emergency with Jack and the ambulance would be at our house, and the kids would sleep right through it, they wouldn’t even know what was going on. When they woke up, a grandparent would be there and mom could be gone for a couple of weeks because she was in the hospital with Jack. So you just do the best that you can, that’s the only thing that you can do, and just lean on your family and friends for support.
Mother of Jack, child, Cutaneovisceral angiomatosis with thrombocytopenia
She goes through it too
There’s a book, My Sister’s Keeper, it’s by Jodi Picoult, and [before I read it] it never crossed my mind how his sister feels dealing with all of it. That’s a book that’s based more about two daughters, and one of them has cancer and one of them doesn’t, and it’s more from the daughter that doesn’t have cancer, from her point of view, and how she feels kind of put to the side. So we include both daughters really. The little one, she’s too little to really understand, but the middle one, we include her on everything that we possibly can. If we can afford the plane tickets at the time to bring her up here, we bring her. Because she goes through it too, I mean she has to sit through the hospital waiting rooms, waiting for the appointment and everything just like he does. She’s not getting the needle sticks and stuff like he is, but she’s still dealing with it. We do try to include her in everything that we possibly can.
Mother of Michael, child, Blue rubber bleb nevus syndrome
My son’s only about 21 months now, so he’s only really gone to the hospital twice for her stuff. I think we’ll go in a couple weeks, he’ll probably go with us and I don’t think he’ll really understand what’s going on. I don’t think he even really notices that she has a mark on her face or anything like that. Honestly we forget that she has a mark on her face until someone at the grocery store or something asks about it….
When she was first diagnosed it did put a lot of stress on some of the other family members because they wanted to be really really super involved and we just kind of needed to process it ourselves first, without anyone constantly pressuring us. So it did put a little bit of strain on some extended family at first but now it’s not a question anymore.
Mother of Grace, child, Sinus pericranii