Posts tagged ‘life CHD ‘

Which is real again?

I feel like I’m living a double life every day. 

I have this amazing online support system.  I wish I had known about them earlier, but I am SO glad I have them all now.  I’ve connected with quite a few people that feel exactly how I do, and just understand.  It’s like when you’re at the hospital, and you have that silent understanding with everyone around you.  I don’t need to say a word to these people, because they already know.  They know why I just suddenly started crying (even if I don’t know the real reason.)  They know why I’m scared because Ava’s oxygen sat is 85.  They know how it feels to not have the answers to your questions, and sometimes they understand how it’s so hard to ask.

In “real life” I still have people that I went to high school with asking, “What’s a CHD?”  Does my Facebook not scream about it every minute of every day?  Did people just suddenly give up gossiping from good old Massabesic High.  I highly doubt it.  Sometimes I just want to scream at these people and tell them to open up their ears!  Most days, in the “real world” I feel like I just can’t speak loudly or clearly enough.  I know it’s like another language to you, I know you’re never really going to understand, but please, please, just learn a little about my other life, and try to gather a basic understanding.  Please?  It would make it so much easier on me, and on you.

I feel like a lot of people don’t even know how to talk to me anymore.  I understand, I’m a young mom, so that throws some people off.  Then they hear Ava’s had heart surgeries, and forget it!  There’s no way they could connect to me.  Look, I’m a person!  I’m Megan.  Yes, I’m also a mom, and yes, I’m a HEART mom.  I’m also a CNA, a student, a wife, but most of all—I’m a PERSON.  I have feelings.  If you don’t know what to say pertaining to Ava’s health, just ask me how she’s doing, or don’t ask about her at all.  Or, you could ask questions about her health.  It might seriously open your eyes to a whole new world, to MY world.

It’s strange to go to a cardiologist to look at your babies’ heart.  It’s weird to leave the hospital.  It’s weird to know that at any minute all of those things could be taken away.  It’s difficult to make those things a part of your daily life. 

It’s difficult to understand if you’ve never been there yourself.  It’s hard to think of the right things to say or the right questions to ask.  You’re never going to think of those perfect words, and that’s okay. 

I just wish there was a way to combine these double lives I lead and make them whole again.  So please, ask me questions, no matter how stupid you may think they are.  Open your minds, and your hearts and touch someone else’s for a minute.  That’s what I try to do every day of my life, but sometimes it’s hard for me to keep things straight.  Which is real again?


8 comments July 28, 2010

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness Congenital Heart Defects Life with a CHD Tricuspid Atresia Uncategorized

Life with a CHD

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