Thursday, May 10, 2012

Why I do what I do

I've been asked a lot Why I do so much for Mended Little Hearts. I've been told that I shouldn't do so much. That i should "cut back" or I shouldn't care so much.

Let me explain why I do:

Today, a lot like a day 3 years ago started off like a normal day. We had a Cardiology check up for Trenton. But, that's a typical event. I always get a little nervous....kind of like the day I had Trenton. I had done it before, but still nervous. Today...I had done it before, but still was nervous.

Well, I got blindsided again. Trenton's heart isn't as "perfect" as it should be. We were told that his sub aortic membrane is progressing. Growing basically. It had been 14mm in September 11, It's 25mm now. If you think of a straw as the valve, this membrane is growing around the inside of that straw, closing off the blood flow as it gets bigger. Right now it's ok. the blood is still flowing through. But, the membrane growing causes Aortic Stenosis (Narrowing of the Aortic Valve) and that causes the heart to work harder, the blood not to flow properly, or a back flow of blood. If/When this membrane grows or progresses to a size of 50mm they will need to remove it. That is an open heart surgery repair. We will check it in 6 months and go from there. NOT something we wanted to hear, or thought we would hear today. Just like that day in March, 3 years ago.'s the difference. Not one second did I feel alone. Not one minute did I feel like I was the only person going through this. I didn't wonder why me, or why Trenton. I didn't feel hopeless and helpless. Sad...yes. Scared...yes. But not alone.

That's because I have an amazing family of friends. These friends have all been there, done that, and we have tee shirts too! Lots of them. And I know that we can get through this. We can manage. We can be ok on the other side. That's the difference that Mended Little Hearts makes. We are all this huge family that none of us wanted to be a part of. But, we are all so thankful we are.

This is my goal for every heart family out there. Every parent who has that talk with the dr. I don't want them to feel alone. I want them to know that we have this huge support and we can all be there together, for each other.

That is why I do what I do. That is why my Mended Little Hearts family is so important to me. Why I pour my heart into it. Why I stress myself out and push myself to the limit for free. Because....Somewhere there is a new heart mom being born every 15 mins. And a new heart dad being born every 15 mins. They need us. they need us to not give up. Not stop reaching them.

I'm not a Doctor, or a scientist. I can't cure CHD's. I wish I could, but I can't. I can't save lives. But I can be a friend, a supporter, a family member to our CHD mom's and dad's out there.

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