My family is really helpful
My family is really helpful, they’re super helpful. My mom, my aunt, his father. I don’t know how I do it; I don’t know how people who have no one do it, that’s for sure. It’s hard work. I’m lucky to have everybody that I have… [They] take the kids upon a second’s notice. It’s hard with all the other kids, like there’s times he’s had to come to the hospital at 2:30 in the morning and I can call my mother and she would come right to the house so we could get to wherever we needed to go. Like, the other day I had to come to the hospital with no notice. Basically they said, “you have to come back,” and I had to call everybody and make sure that my mom’s always right there to pick the kids up. Financially, she’s a very big help, too.
Mother of JT, toddler, CLOVES syndrome
This is not the center of our life
In general, we have a very supportive family, but I can’t say that they’re supportive about this condition. Like I said, I think we live pretty normal lives. This is not the center of our life at all. I know Gabriela has this, but to me I just view Gabriela, and I think she’s going to have that self-image of herself as well, as just very normal.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
Everybody just loves him
We live an hour and a half from my husband’s parents, and about three from mine, but they’ve all been wonderful. Then we have a couple in our church here that have always helped me with him since he was a baby. If I had to go somewhere that I couldn’t take him, from the beginning they offered to help me with him so that’s been such a blessing. Especially when he was little, most people have teenage babysitters and I didn’t feel like I could leave him with just anybody because if he started bleeding, they wouldn’t know what to do. So that’s been a wonderful help, having an older couple who I can teach what to do and I felt comfortable leaving him with them. And they love him too, he’s such a sweet funny child, he’s like one of those people that everybody is drawn to. It’s not just because of his problem, he’s just one of those people. From the time he started daycare, it’s like everybody knows Cooper, and they’re all waving to him and telling him bye every afternoon when I pick him up, and he’s just so fun and happy and everybody just loves him… It does not faze him in the least. He goes outside and runs around and has no clue that he’s not as fast as everyone else or as steady, he doesn’t, he has no idea
Mother of Cooper, child, Klippel-Trenaunay syndrome
What’s really hard about this is the unpredictability
It’s interesting, it’s kind of like circles of people. There’s a tight inner circle which I know that if I needed to call people in the middle of the night, they would show up here, if we needed to go to the hospital, to take care of our other kid. Then there’s the next layer out which is people who will bring us meals and shuffle children around, or be a distraction for the kids or whatever. So there are these layers of support and family, which has been really great. I feel like we’re really lucky to have that, but I think that the long answer is that that’s what’s really hard about this is the unpredictability, and that’s gotten easier just because we’ve been dealing with it for 8 years. I wish that those interruptions didn’t happen, and I wish she could just continue to do normal kid’s stuff, have a regular summer. It’s really hard.
Mother of Riley, child, CLOVES syndrome
Your support network
My mom’s a really important part of my life and I knew she was going to be a really important part of Matt’s life, so she came to the doctors’ appointments too. We made sure to take her once or twice so that she was hearing the same thing leading up to it, or even about the treatment of sclerotherapy and stuff. So that your support network around you understands what the clinicians are talking about, I think that’s really important too.
Mother of Matt, child, Lymphatic malformation
I don’t know what I’d do without them
I have a really good support system, especially on my side of the family. My parents are very helpful. I have very helpful siblings. I have my family. My extended family is very helpful, so I really lucked out in that sense… They take care of my son, take care of my kids when I’m at work. My dad’s extremely good with comforting my daughter and especially my mom too. They’re very good with Emma, they’re very good with my son trying to explain, trying to take care of him along the way and just find activities and things to do. I mean, they’re great, I don’t know what I’d do without them. I’d be lost.
Mother of Emma, child, Venous malformation
It’s a huge deal to us
Mom: We have a good support system back home. My mom usually keeps the girls for us and his mom keeps them if my mom has to go into work for something or has a doctor appointment. So I mean, we have good family that helps out.
Dad: Church is pretty good. The preacher especially.
Mom: He’s been really good, and the church as a whole has been pretty good. The older crowd is a lot better to us than the younger crowd. The younger crowd, the ones more around our age, they just act like it’s nothing. When you’re going through it, it’s a big deal.
Dad: We have a couple of friends that are really serious about keeping up with us, asking if we need anything.
Mom: But it’s hard because a lot of friends that we used to have, they, you know… You have friends that either that’s all they want to talk about, it’s like you have nothing else to talk about; or they don’t mention it at all, like they don’t know what to say to us because they’re afraid they’re going to say the wrong thing or ask the wrong question, and so they just don’t say anything at all. And that’s kind of difficult to deal with, because they act like it’s just nothing, when really it’s a huge deal to us. Because every decision we make, from whether we go to the grocery store that day, everything is a huge decision, everything is based off of how he is that day, so you just never know.
Family of Michael, child, Blue rubber bleb nevus syndrome