So, I've really debated writing this post. I actually was going to start a new blog just for this so I could write a little bit more anonymously. But thinking about it this is a pretty big secret so why not use this blog ... not to mention all the names I want are taken on Blogger and Wordpress and I'd end up with some name that included my initials or random numbers and that just loses something. No one wants to be xyzblog2.com - lame. And I need to get all this out - correction I need to have a place to get this out. Writing is the only thing that's ever really helped me work through things. I can express myself without hearing any comments or looking at someone. So I'm hoping this will be therapeutic.
So here it goes... This will be multiple blog posts... warning you now.
I was born with a hole in my heart. I never really thought about it because I was a baby and don't remember it. But I guess that's pretty scary. Growing up it was just something that happened. It sounded kind of cool like a scar - only you can't see it. But apparently for my parents it was pretty terrible. The doctor actually told my parents they couldn't guarantee I'd live eight months. Thinking about that and knowing my parents is heart-breaking. I know how much they wanted a baby and I can't imagine suddenly getting one only to know that losing her is a very real probability.
Luckily for me, my hole closed on its own. But I was left with a bad valve that leaked. I went to the doctor, I take meds once a day and I can't lift heavy weights. I went through life pretty much blissfully ignorant. It was a mild inconvenience that resulted in a few catherizations, meds and a doctor's visit once a year. Life was good. I don't consider myself to be sick and you probably couldn't tell I had anything majorly wrong by looking at me. I look normal. I don't have scars. I don't have tubes coming out of my chest. I've never had surgery (I don't count the catherizations). I don't have that many restrictions. I consider myself healthy.
So here is secret one. I haven't told many people because I don't believe (usually) in airing out everything. My husband and I have been talking about having a baby. He was more serious than I was. I'll admit that. I liked the idea. I liked the thought of a little baby that looked like us - not so secretly I wanted her to have my dark hair and his blue eyes. I had names picked. But that was as far as I would take it. Babies change things and I don't like change. Babies would make it hard to meet up with friends after work, or go out on weekends. I would have to plan things out. All I could think was the negatives. But I agreed that January would be a good time to get serious. Maybe because secretly I knew I needed a time frame to get settled with the idea.
Secret two would be I may look healthy but really I'm not...
I knew because of my heart it would take some planning. I'd always known I'd be a high-risk but I figured that meant a precaution and I'd get a few extra photos of the baby and maybe better hospital food. So I went to my heart doctor this year and I asked... "we're thinking about having a baby. What do I need to do now?" And I got nothing. It was probably the worse feeling in the world, sitting there to silence. Sitting there and feeling like everything is collapsing. That's the day my world tilted and it hasn't been the same since. I can look at it now and realize that was the last time I was probably truly and utterly carefree happy. That was the last time I didn't want a baby. He ordered tests.
I found out what I have. That's a plus. It's a bicuspid aortic valve with mild to moderate regurgitation and a dilated aortic root. Quite the mouthful. Google it. I've learned the Internet is a minefield of bad news. There's nothing positive about what I have. It's doom and gloom and surgery and mortality rates. The Internet would have me believe I should be lying in bed thanking God I'm even alive. It's frankly depressing.
And the tests? Well, I should save it for another blog. But one tests has led to hours of research. Calls to other hospitals. Consultations. And a whole hell of a lot of bad news. I'm really hoping that writing about this will not only help me but maybe help someone else out there in the same boat feeling alone and helpless. Because I've learned that feeling alone, helpless and hopeless is pretty much the most depressing feeling there is. And the one thing I pray for besides peace (for myself the Middle East is on their own), a miraculous recovery and the standard safety/happiness for my family and friends is someone else out there that I can talk to that has been through this and can honestly say it gets better. I want someone like me writing a blog somewhere that I can relate to. So that is part one.
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