Hypoplastic Right Heart Syndrome

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Hypoplastic Right Heart Syndrome
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    <p>Do you struggle with accepting your limitations?</p>
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    A Judgmental Comment Increased My Confidence in How I Raise My Child

    My story is a little different. My daughter was born with hypoplastic right heart syndrome, a severe heart defect. I can tell by her breathing and by looking at her lip color and nail beds when she needs a break. We live in a pretty small, secure bubble because she gets sick easily, but one day, I decided I should let my daughter experience the outside world. She was running around playing while I kept a close eye on her and those around her to make sure no one had the sniffles, a cough, pink eye or anything of the sort. Soon, I noticed she was panting. Her lips were turning purple. I called for her to come over to me and told her it was one of those times we’d been talking about when she needs to take an inventory of herself and decide it’s time to take a short break. She’s 4 years old, so it’s not like talking to a grown up. It can be hard to explain these things. The lady next to me scoffed and said, under her breath like I was some insane person trying to limit my daughter, “They play! That’s what they do!” She didn’t know this was a huge step for us. I wanted to scream, “She could go into cardiac arrest any time! I’ve seen my daughter die twice, and I’m not interested in seeing that again!” Instead, I took a deep breath and realized it didn’t matter where we went. We would always face adversity. That was the moment I decided I would teach my daughter to just be herself, to be proud of it and to know what she needs without worrying about the people around her. Since that day, she’s figured out when she needs to take a break and is able to explain that her “special heart” needs to chill out. I couldn’t be more proud of her. The woman who made the uneducated remark that day made a huge difference. I’m my daughter’s biggest fan, and if I teach her to laugh those people off, then she will have no problem doing it. If I’d engaged in a nasty confrontation, my daughter would have felt like she was somehow less human than the other kids. Now, she proudly shows her scars, brags about her immeasurable bravery and knows exactly which arm she’d prefer when doctors are doing testing. I learned that day that even young kiddos need to have choices and must be in control of their own bodies. Giving her that is the best thing I can do for her. For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.   Want to celebrate the human spirit?  Like us on Facebook . And sign up for what we hope will be your favorite thing to  read at night .