Well, it is Congenital Heart Defects Awareness week- has been since the 7th. I’ve been going back and forth about this post… starting it, then deleting, then starting again since the 7th.

You see, I have loved being able to share resources with my friends on my social network pages, but I’ve kept it surface level. Just sharing articles and facts others have shared before me.  But I have NOT wanted to write about it here for various reasons.

One, I am trying to make this blog less depressing (ha) than it was last year. (Just don’t mind my last post!)

Two, I feel like maybe people are tired of hearing about it. Sometimes I’m totally tired of talking about it.

Three, I just don’t want to go there. I don’t want to go back to that dark place. I don’t want to think about how I almost lost my precious baby. I don’t want to feel the anger towards the doctors who refused to help us, the doctors whose arrogance almost cost her life. I don’t want to feel the disappointment of when the first procedure was a fail. I don’t want to feel the fear and sheer panic of giving my baby over to surgeons to put her on a bypass, stop her heart, cut her chest open, open her chest cavity and work on her non-beating heart. I can’t… just can’t… stand to think of seeing her for the first time and her being strapped to a tiny table with wires coming out of everywhere screaming in unbearable pain in this eerily hoarse voice because of the breathing tube. Even more so, I just can’t feel that ache to hold her and comfort her but the sound of my voice and my touch causing her even more pain.

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But, you know what else I can’t stand?

I can’t stand the SILENCE surrounding Congenital Heart Defects. I can’t stand the fact that it is THE MOST COMMON BIRTH DEFECT and yet NO ONE TALKS ABOUT IT! Not once did I read in all of my pregnancy books about it. They never advised me in the wealth of sometimes silly knowledge that I should get the ultrasound tech to do a detailed heart scan   at the 20 week ultrasound. It never once mentioned heart defects. Not once.

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I hear over and over again from other heart moms that they were shocked into the CHD world, like me, because of their own babies’ defects.

How can that be if it is the most common birth defect?????? Can anyone tell me this????

So, I won’t be silent. I will go there and feel all the pain, fear, anger, and darkness.

Because I also got to feel the ultimate joy when my baby was deemed “fixed”. I got to feel love from my friends and family and total strangers who reached out to me and prayed over Ryder. I got to fall back onto my faith in Jesus Christ that no matter what happened- whether she lived or died that day- that He was the Healer in more ways than one and would comfort me and give me peace no matter the outcome. And I truly believe/believed that. I knew He carried me through those moments and He still carries me through any darkness that creeps back in.

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And I want YOU, whoever you are, to be able to feel that joy too. If talking about it and telling whoever will listen about it and beating it to death saves ONE life, wouldn’t it be more than worth it?!

I love when I hear that my friends made sure their kids got pulse-ox tests before leaving the hospital. It gives me such a surge of joy. I can’t even explain how much it thrills me.

I LOVE when I am contacted by friends to reach out to other heart moms. I hate that those people are going through it, but I love being able to just send a message (whether they ever respond back or not I could care less) encouraging them and sending them Bible verses that carried me through my time in that darkness. People did that for me, and now I will return the favor the rest of my life.

So, thank you for praying for me back then, and thank you for still listening to me reflect back on that scary time in our lives.

You’ll hear about it again, too, because I just can’t be silent on something that is so important to me and my family’s lives. We want to save babies like Ryder because the only people you can count on are the ones to pray over you and tell you about things that even doctors fail to educate you on. I want that to stop here. Or at least be a start to ending.

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I want people to have silly, giggly, cheesy toddlers filling their homes with joy and love and laughter like I am so blessed to have in my own home.

THIS article is the best I’ve seen in the world of CHD awareness. Please take a second to read!

 

Related posts:

4 week cardiologist appointment
Easter 2012
Look at us, we are all the same.

4 comments on “stopping the silence”

  1. I’m a Heart Mom, too….have been for 16 years!! CHD is very frightening, but my son has done GREAT!!! I’d love to chat with you!!

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