Thursday, February 7, 2013

Awareness What?!

Today kicks off Congenital Heart Defect Awareness Week.  I should be pumped up, right?  I should be shouting from the rooftops so others hear that nearly 1 IN 100 BABIES ARE BORN WITH A CONGENITAL HEART DEFECT.  I should be motivated to tell expecting parents that only 50% of CHDs are diagnosed in utero. 

The truth is, I'm not pumped up.  I'm angry.  As much as I love the heart family that has been my life raft for the past three years, I really wish I was still ignorant.  I wish I was one of those people that muttered to myself when seeing a million social media posts, "what the hell is a CHD?"  I wish I didn't feel guilty and brought to tears feeling as though bearing these feelings will do a disservice to my heart sisters.  But I can't help it.

I hate the fact that nearly every single day, for the rest of my life, I'll cross paths with a mother who will watch their child die, watch their child suffer.  Even I, the most strong-willed and stubborn woman, can only endure so much. 

As much as I'd like to retreat from this world.  I cannot.  I have a duty to warn.  A duty to educate.  A duty to empower.  It is my calling.

So, even though I hate you Congenital Heart Defects, with every ounce of my being... I will give you my fullest intention this week, February 7th -14th, so that someday, a mother can look back on this blog and say, "Oh my God, I cannot believe children were dying on a daily basis from heart defects.  Thank God medicine has evolved since 2012 and we don't have to live in that fear."

Zoe Madison, living with half a heart.
My trailblazer.
My inspiration.

3 comments:

  1. Well said Stacey <3 This past year I've connected with so many moms who live CHD and other birth defects every day, feeding tubes, hospital life, staying at RMHs, and when I try to explain it to an "outsider", I then realize how skewed my "reality" is, because I'm now a heart mom and no longer living in blissful ignorance.

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  2. Very well said. I love the online networking but this year I'm focusing on spreading awareness in my community. To reach those NOT on my friend's list. Hugs my dear. Great post.

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  3. My thoughts exactly. This week I am just mad and am feeling like this whole CHD world is just unfair.

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