Monday, November 10, 2014

Things I never thought of

I remember when I was around 19 years old and I went to my first dentist visit without my parents. I had to fill out a form, there were tons of questions about having different diseases (check yes or no). I remember going down the list (quickly and slightly annoyed) checking no for all of them. One of those things was heart disease. When Olivia goes to the dentist, she will have to check yes. I know that doesn't seem like a big deal but the fact that a simple visit to the dentist can be dangerous for her is so scary to me. Heart disease was never something I gave much thought to but now, it's always in the back of my mind. If I overhear someone else's conversation and heart disease, heart failure or a heart attack is mentioned, I freeze. It always stops me in my tracks and I try to listen in, I probably shouldn't but I always want to. Even when I see commercials on TV for medication and they say "Do not take if you have heart disease", it makes me cringe. I see so many people asking questions in the heart group that I wouldn't even think to ask. Will Olivia be able to ride roller coasters? Will she be able to go to a haunted house? Can she take certain medications? Will she be able to have kids? I have no idea. I always write down all these kinds of questions so I can ask her cardiologist. I will be sad for her if she has to miss out on experiences. When people look at Olivia, they see a normal kid. She runs around and plays, she looks healthy but I feel like her heart disease is always hiding in the shadows, ready to flip our world upside down again. When I can't fall asleep (often), my mind starts to wander. I think about when she is older, if she will be embarrassed about her scar or if kids will make fun of her. I will do my best to teach her to be proud of herself but I know I can't shield her from everything (I wish I could). When she's my age, will she take care of herself? Will she go to her cardiology appointments like she's supposed to? I know, I think way too far into the future but even when she's an adult, I will remind her to be careful. I know she is okay right now, I will always treat her like she's a normal kid. I wont let her heart disease define her but it's definitely a part of who she is. It's her story and there are so many little reminders of that every single day, it can never be just brushed aside. Even when people ask me about having another baby, the first thing that pops into my mind is "Will the next one have heart disease too?". I don't know what the "normal" baby experience is, I feel like I was robbed of that. When Olivia was born, she was rushed away from me. We weren't able to spend all of our time in the hospital room together, she was in the NICU. I couldn't hold her for weeks, I couldn't breastfeed her, I could barely even bottle feed her. If the next baby is completely healthy, I feel like the experience will be so different. As much happiness as I had with Olivia, there was a lot of sadness that came along with it. I was scared most of the time and then I felt guilty. I wanted to just be happy that my baby was here and alive but I was so nervous that I would lose her. I don't want the next baby to go through any of that, it would break my heart just like it did with Olivia. This turned into a long ramble, I feel like I just typed out a bunch of scattered thoughts so I hope this post actually makes sense. I always wonder if other heart parents feel the same, it's nice to know I'm not the only one.

So thankful for this beautiful little miracle.

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