I’ve gone to preschool with most of these kids, so they’ve known I’ve had a heart problem most of my life. And then other kids will just find out, but not everyone knows.
My biggest worry might be about friends, actually, since I’m not in school and it’s really hard for them to visit me. I’ll probably go back starting next year in high school. When I go back, will they remember me or will they have all different friends? I don’t’ know if I’d be like an outcast.
A lot of questions
Some people ask a lot of questions. Some people ask really stupid questions. Like, “Does it feel weird that you have a new heart in you?” Or, “Does it hurt that you have a new heart?” I don’t know why your heart would hurt! I think the strangest question was, “If you had the heart and they dropped it on the floor in the operating room, would you still be able to get it, or would they sterilize it, or would they throw it out in the garbage?” I’m like, “I don’t know…”
Sometimes it annoys me because I get the same question over and over again. Like I get a lot the question, “Do you know who it’s from?” But I don’t know, so it kind of just annoys me. But then other questions that are interesting, like they’ll actually learn something from it, they don’t bug me at all.
It has affected my social life just because, like, we’ll be talking at a sleepover or something, and something someone will say will remind me of something I’ve done at the hospital, but that’s not a normal thing every 14-year-old girl has experienced! Just telling it, like, saying it out loud, everybody looks at you like, “What are you saying?” But I don’t care! I know who I am as a person, and they are still trying to figure it out.
Closer to my doctors
A lot of my classmates have been through it with me, for the second transplant…I mean, obviously, I can’t explain everything to them, they won’t understand, but I try to keep them involved and tell them how I am and stuff. And they somewhat understand: they know that I might not be here for a day because I have to go into the hospital for a doctor’s appointment.
And I mean, even my friends’ parents don’t understand! I feel like I’m closer to my doctors than I am to my friends, because my doctors, although they haven’t personally experienced it, they’ve seen it so many times that they know the struggles that we face.
I’ve lost a lot of friends
Mom: You know, there were friends I thought were my closest and dearest friends that never called to check on me once. And then there were those that I thought were acquaintances that checked on me all the time, you know, would go and check on my kids, would drop me an email just to say hey.
Jess: You find out your true friends.
Mom: Yeah, you do. You find out who’s there for you.
Jess, 18 and mother
Realizing I was different
Probably the first time I realized that I was different was because I needed to go into the hospital a lot more than other kids. I needed to get different check-ups and treatments and dadadada, but I thought that was kind of normal – I thought every kid kind of did that! Then around preschool, when I was starting to be a preschooler, I remember – it kind of stinks but kids would actually make fun of me because my teeth were discolored because my liver couldn’t clean out all the things it needed to. Before I got my baby teeth, bilirubin, bodily chemicals, were just not being filtered out, so when my teeth came in, they were a bit discolored. Kids really made fun of me for that! I was really confused and I didn’t know why, and my mom explained it to me, so that’s when I kind of became aware.
I didn’t know what to say
It was hard, especially in the summer, playing at the pool, wearing one of those the little flowery bikinis you wear when you’re a little kid, and having slightly older kids come up and look at my scars and be like, “What happened to you?” And I didn’t know what to say!
Either I wouldn’t say anything and I would just walk away, or I’d get really mad at them. Some of them did say it in a mean way, but most people were just curious – I mean, they are scars, and they’re not small! Sometimes I would snap at them and be like, “It’s none of your business!” because I was really defensive and self-conscious. But I do remember being really little and just being really scared, like, put on the spot, crying and running away. Sometimes I would just say I had an operation and then people would be like, “Ohhh.”
I definitely spent a lot of money on cover-up, trying to smear it all over, as a little kid!