When I’m not the Funky Heart

One of my Facebook friends is highly agitated… with good reason:

I’m SO sick of hearing “Aww so now are YOU the one with all the heart problems?” I mean HONESTLY…Do you people think that’s a nice thing to say? People don’t say that to cancer patients so why say it to us?

Preach it!

Personally, I don’t mind talking about my heart. (Hey, I write about it every day!) But I do have a few pet peeves. There are times when I just want to be me. This is an invisible disability, after all, and occasionally I want to remain invisible. Just one of the group, nothing unusual about me. When I hang out with my friends here at home, I’m not the Funky Heart and the words Congenital Heart Defect rarely cross my lips.

Another major irritant is being introduced not as a person, but as a health issue. Don’t you dare. If you introduce someone as “having a heart problem”, you’ve marked them. You have defined them by their medical status, and placed them at a disadvantage. Certain segments of the population will see them as “less than”. And if the other person is a young lady that I might have an interest in… well, you just threw that opportunity out the window. I want her to get the chance to know me. There’s a lot more to me than just my heart. If things go well, I will be the one who decides when it is time to have The Big Discussion, not you.

And the younger you are, the worse it can be. It’s a delicate balance – Mom, I know that you are grateful that your child survived their heart defect and any related surgeries, but your 7-year-old really isn’t in a position to ask you to hush and just let him be a kid. This would be a very good time to sit down and have a good talk with your child, and learn what they think. Perhaps talking about their problems while he/she’s present makes them uncomfortable.

The worst thing I have ever seen is a mom who insisted that her child pull up his shirt and show off his scar. You could see that the child felt like a Show and Tell object…. and mom was oblivious to the entire thing.


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6 Responses to “When I’m not the Funky Heart”

  1. Jamie Says:

    Steve, thanks so much for talking about this. Because I am the mom of a 7 yr old and “one of those moms”! You just made me realize that I have GOT to stop telling everyone. Sometimes I just can’t stop myself because I am so proud of his strength and want to use him to help spread awareness about CHDs. And usually when I mention it to someone, I think to myself, “now why in the world did you just tell that person that you don’t even know about his heart:!” But seeing it through a different set of eyes such as yours is helping me so much realize what HE needs, not what I need. I have never thought about it in this point of view and he’s old enough now that we need to sit down & talk about these things.

    Thank you for opening my eyes so that I can help my kiddo lead a normal life. Well, as normal as possible.

  2. Hilary Says:

    OMG!!! thank You so much for speaking your mind. cause I never would have thought of my son feeling this way. An yes I have been doing some of these things . But I will stop today

    Thank You
    Hilary mom to Kip age 3 HLHS

  3. Kathy Says:

    I too am one of those parents, my son is 6 and has tricuspid atresia, and I find myself mentioning is heart problem to strangers. my son has never said anything about this to me, but I am sure he will give me an earful when he gets a little older.
    I used to be the mother that didn’t want anyone to know about him, I would make him swim with a shirt on and when he would have pictures taken I would make sure his scar was covered up. I thought out of site out of mind. But the more CHD moms I talked to the more I wanted to celebrate his heart and how brave he has bee through this whole ordeal.
    I guess I need to find a happy medium.
    Thanks for expressing your feelings to all of us, I don’t think my son would say anything to hurt my feelings.
    Thanks again

  4. Heidi Peterson Says:

    Thank-you for sharing this insight. As a mom, I am learning as I go, and I want the best for my daughter. Your words will help me to give her what is best. I have never thought about things from her perspective. Thank-you so much!

  5. Amy Schroeder Says:

    Thank you for writing about this! My goal is to always let Logan be himself and to not overemphasize his heart issues. Us mamas think the survival stories are to be shouted from the mountaintops, but it’s also important for us to remember that our kiddos are only human and probably just want to blend in! Thanks for the reminder

  6. Kerri Pennington Says:

    I rarely tell anyone about Mary Clare’s heart defect unless it happens to come up in some form or another. (Except on my blog for the world to see, of course. wink wink) I treat her as a whole hearted little girl and I want the world to see her for who she is, not how her “funky little heart” works. I want her to have the same experiences, same opportunities and the same chance that we are all given. Her heart is certainly a huge part of her life, but it doesn’t define her or our family! 🙂 Thanks for another insightful post, Funky!

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