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What It Really Feels Like

What does it really feel like to have a CHD? Well not great all the time. There's constant let down in life as doctors figure out how to treat us adults. There is a lot of trial and error medically based which is why I say I'm in 'Generation Guinea Pig'! My first memory was my mom changing my younger brother's diaper and telling me that when we got back home from vacation I was going for a cardiac cath. So I'm 4 1/2 years old. I don't recall crying which I was told I did but I already knew what a cath was it wasn't new to me. Neither was my addiction to Annie the Musical, my mothers voice or my desire to sing like them be on stage and be a mommy when I grew up. I wanted to sing and be a mom as a grown up and of course I'd have a cute husband.
When mom, David and I walked to the beach my father was there with Andrew who was just told about my going to the hospital too. In those days we were pals and he found me a sea shell- my favorite. 

31 years later I feel the same way and it's not for lack of trying I date, all the wrong men. I'm on disability and can't afford dating sites or be bothered to go out on dates with anymore racists and uneducated unemployed men. The online dating scene is one big online meat market that I feel as if I can't be bothered and might as well hang out in the butcher department. I can't carry a child and have a pregnancy. So there's more hurt and disappointment than I can express in a note typed on my phone so I'll just say it sucks!! I'll adopt no problem which took years to say but that's a lot to ask of a partner! I'm envious of my younger brother and cousins and quite frankly my friends. I was the girl held back for learning differences related to my CHD most likely so I was always 1-2 years older than people in my grade further making me feel different. If I need to feel that way there's a mirror to show all battle wounds.

Lastly I can't sing as well as I wanted to make a career out of it. Where my dreams just dreams from the start? I don't know? I've worked my ass like no one does and I'm back in the safety of my house for over 3 years. 

There are days when my big girl panties are stretched thin and I wait for the next shoe to drop, and days where I know who and what I am little Miss Wonder Woman who can do it all. But when you're tired and or tired and frustrated you realize this is not what you've strived for and it feels sad and lonely!

Sometimes it's too much for me to bare looking at my friends' adorable children because it drives a nail right into my heart. 

I'm trying to create a new reality but haven't figured what it is yet.  Suggestions are welcome as are matchmakers and a gene pool. But some of this has to come from me and I just need support on this journey. I believe everyday is precious and a new chance so I stick to that. 

But if you ever wanted a quick glimpse of what it's like these are the raw facts, definitely not the end! It kind of sucks!!  

These 3 dreams are fading faster everyday it's just the time in my life to let them go and it's extremely impossible!  
Till tomorrow - Ellie ❤️


  1. Hello Ellen,
    I just wanted to tell you that you are very strong and I know it isn't always easy. I am 35 years old and also have tricuspid atresia. I have some of the same limitations and frustrations as you describe, but I also try to always stay positive and appreciate the things I do have. By the way, that's awesome that you auditioned for America's Got Talent.



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