Tuesday, August 14, 2012

It's Not Just Kids

I guess I just don't fit in. I mean I fit in to a point but then I just...don't. 
Maybe because I'm an adult. Parents see me and are like
 'oh she was born with a CHD and made it, she's done, she's beat this.' 
Like now that I'm an adult I'm done with this. It's only children fighting CHD after all.

Can I just call a bullshit? I'm tired of parents acting all high and mighty like its only their child dealing with this crap. Well guess what, its not!

Let me say, yes I know right now some kids are going through hell. I'm not trying to belittle their journey, just like I wish some parents wouldn't belittle mine.  I was once like your child. I had my first surgery at 2 days old. I've been in an out of heart failure, I almost died 3 times during my fontan. I've had seizures and I've been in a 2 week coma. I've been through hell too. My last surgery was when I was 19 because I was in severe heart failure and could die any moment. 19 - not a child. 

My cardiologist told my this journey will end in a heart transplant. Not that that's really an end or a cure, its just the beginning of another journey. 

I just felt the need to get that out. I at times feel I need to just leave the CHD world. I was happier when I wasn't in it. I've made some friends, but they usually leave me for another CHD parent because they "understand better." Or they leave me because I "bitch and moan" to much. Because they are doing good and don't want to know what not doing good looks like.

I get it, I'm sorry I speak the truth. I should try and make everything seem like sunshine and daisies.
And I know I'll probably offend someone with this post. Guess what, I DON'T CARE.


  1. Jess I feel for you. Like you I don't sugarcoat stuff. Life with a CHD is NOT all roses and kittens.Some days it's hard just to put one foot in front of the other. Some days you just are too tired to do much of anything. I am doing well right now but there was a time (many times actually) that my mom & grandma were told to say goodbye to me because I wasn't going to make it.Many times my mom was asked to sign a DNR. We are the lucky ones. We got to grow up and pave the way for future Adult CHDer's.

  2. Hey Jessica,

    I don't want to take anything away from what you feel, because you are certainly allowed those feelings, but I hope you won't mind if I offer a different perspective.

    After my daughter was born I went through a stage where I was really angry and upset at a lot of people in my life who I felt had let me down. I couldn't understand why they weren't there for me, and why they didn't care.

    It took some time, but I realized that I couldn't expect anyone else to understand what I was going through, unless they had gone through it themselves. And even then, our experiences would have been different.

    I have a sister who is having a hard time getting pregnant. She is mad at the world (mostly her family) because she feels like we don't support her enough...that we don't care enough.

    We talked about it one night and I pointed out that it wasn't fair of her to expect us to understand her trial. Our other sister is as fertile as they come, and gets pregnant just thinking about it. Of course she isn't going to understand what it means to be infertile.

    In your situation, at least on IHH, you are surrounded by women who have little children with heart defects, not by women who have lived their lives with a chd.

    We will never be able to understand your point of view entirely because we haven't lived what you have. And as much as you know about heart defects, you can't understand what the mom's have been through, because you haven't lived it from a mom's perspective.

    I would bet that if you were to find a group of adult CHDers you would find a completely different experience...one where you would probably feel more understood and accepted.

    All of us, including you, are really doing the best that we can...we're trying to survive the cards that have been dealt to us.

    Obviously I have no idea if some of the frustration in this post is directed to those of us at IHH, but if it is, I would hope that you could see how much good there is in that group, how much love people have directed your way...

    We're there to love and support each other - and I hope you feel that from our group. And too, I hope that you have patience with those of us who simply can't understand everything that you're going through.

  3. Hi Jessica

    My name is Jenna. You are a brave courageous fighter. you are a special miracle from god, a gift from above, earthly angel,and you are a smilen hero. You are full of happiness, life, smiles, joy, fun,love, and spunk.

    I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays.

    I wrote this poem
    Each of us are Special
    Each of us different,
    No one is the same
    Each of are us are unique in our own way,
    Those of us who have challenges, we smile through our day.
    Those who of us who have challenges, we smile through our day.
    It doesn't matter what others say
    we are special anyway.
    What is forty feet and sings? the school chior

  4. I have a 'mild' congenital heart defect that wasn't even found until about a year ago-I'm 22. However, this mild defect means my aortic valve is starting wear out. If it's not caught and eventually treated with an open heart surgery (or hopefully, mine will last long enough so that I can do a minimally invasive surgery similar to a catheterization), then it can even lead to heart failure. Some days are hard, plain and simple, because no medication treats regurgitation! When even putting in a load of laundry wears you out, it's easy to get frustrated. I too deal with anxiety and MDD. But I am here for a purpose, and try to live life as best as I can, and pursue my dreams with music and things. Nice to find a page with someone very close to my age dealing with adult CHD (nice to have someone my age out there, not nice that you have it!!!)