I’m really close with my parents. I think if you can be really open and communicative with your parents and your family that’s great, because they’re the ones that have been there with me throughout everything, since day one. When I felt like no one else understood, they definitely did. They were the people I could tell anything to, and the rest of my family I get along with really well and they were so supportive.
Erica, young adult, Klippel-Trenaunay syndrome
It would be ridiculous to say that my brother and sister weren’t affected by it
I will say it definitely has had an effect on my family, for sure. Not always through me, but certainly growing up there were times that my mom had to take me to the hospital so my brother and sister would be at home with my step-dad, and there’s negotiating as far as that’s concerned. It would be ridiculous to say that my brother and sister weren’t affected by it, and I’m sure there’s concern. As much as I’m my own person and I might get sick, I’m sure little kids worry about their sister or brother being sick. I know any time my brother had bronchitis I was concerned that he would get better, so I’m sure that’s an aspect. Overall I’d have to say that how I interact with my brother and sister hasn’t changed all that much, except that being a big sister I might keep it away from them a little more; I don’t generally talk about my health with them. They’ll ask how I’m doing, they’ll know I have a surgery or I’ll talk to them when I’m in the hospital, but I prefer to keep our topics of conversation when we hang out to the movie that we’re going and seeing or focusing on whatever we’re doing at the time. Even though they’re 18 and 20 now, I still consider them my little siblings so I just feel kind of protective of them. If they ask me how I’m feeling I’ll say “Oh I have an infection,” and kind of just leave it at that, not get into too many details. I have to say, I’m really happy overall with the relationships I have with my family.
Sarah, young adult, Klippel-Trenaunay syndrome
She does really well
Joe: With my sister, sometimes I do think that she feels like there’s a lot of medical attention going to me. That can sometimes be—I don’t know how much of a shadow she thinks it is, but… She doesn’t mind, she knows what it is, but I think she does sometimes think it’s…
Mom: A lot of focused attention. A lot of attention on Joe, which most siblings feel that way for some reason or another. She does really well.
Joe: She doesn’t show it, but I’m pretty sure that sometimes she definitely would prefer that I sometimes get less attention because my medical has always been getting in the way. There’s always been doctor’s appointments that we’ve had to drag her to, there’s been a lot of prosthetic appointments that she has not wanted to go to but we’ve had to drag her to because you can’t really do anything. She’s not a fan of going to doctor’s appointments and that’s something that she’s had to do some of because of my medical history. She’s not a fan of that.
Joe, pre-teen, and mother, Reticular hemangioma
She never knew how it was to have just a normal sister
Mom: Her sister is 8 years older. I think that’s actually really helped because the first time Ashley went into the hospital for eight months, I was away from home, but her sister was old enough to understand it.
Ashley: Since day 1, she knew something. It wasn’t going to be, like, a normal sister. I’ve always had this and I’m her only sister, so she never knew how it was to have just a normal little sister, so she never had that to compare it to.
Mom: I’m sure it was difficult for her, you know, your mom is having a baby, brings home a baby that looks so incredibly different, and at the age of eight her trying to explain to her friends and comprehend the whole situation. Also me being away, and the ambulance came quite a few times and she got medevac’d a couple times. That was, I think, very stressful for her as a child to go through.
Ashley, teenager, and mother, Lymphatic malformation
It made our family that much stronger
Honestly, I think it just made our family that much stronger. Spending all those nights in the hospital and I would spend all day with my parents and I have 2 younger brothers that would come in and they’d bring our video games into the hospital and we’d just hang out and play video games for hours. I think it just made everybody a little bit closer, it made our relationships a little bit stronger. I mean, I think that can be said about really any traumatic event that a family goes through together; I think it always has that effect of bringing you closer.
Kevin, young adult, Gorham’s disease
I think it helped our family remain closer
My LM has affected my family, but not in a negative way. When I was younger, I think it helped our family remain closer. My sisters were always standing up for me (and still do) if anyone was being rude or staring too long. My parents never treated me any differently. They still expected me to do my chores, do well in school, and treat others with kindness and respect. When I had surgery during the summers, my sisters would spend time with my extended family in Maine. My parents were, and still are, very supportive. They have always told me that I can do pretty much whatever I want and that I should always remain positive. I think the biggest thing that was helpful was that my parents never gave me any special treatment or treated me any differently than they did my sisters. I got punished just the same, and had to eat my veggies and do all of my homework.
Emily, adult, Lymphatic malformation