Friday, February 8, 2013

CHD Awareness Week 2013

Every year from February 7th to the 14th, members of the heart community rally behind each other in honor of CHD Awareness Week. We do this year round, but these seven days mark our "official" week--our opportunity to celebrate our children and to teach those around us about the worlds most common birth defect.

I envisioned this being a BIG week on the blog...a week filled with educational posts, statistics, stories...but here I am, 2 days in to our week, struggling to write just one simple post. I'm not sure what my deal is. I just can't seem to translate my thoughts into written word lately. I write a sentence, delete it, re-write the same sentence I just deleted...then I get frustrated and walk away. Sigh.  I just feel overwhelmed sometimes.

Maybe it's because all of this heart awareness (which I love) serves as a constant reminder of what we lost. My Facebook page is constantly filled with awareness posts--and with these posts come incredible stories of children who are defying all odds, children living with half hearts, children with faded scars running the lengths of their chests. There are pictures too...side-by-side images of of newborns with their open post-op chests and then that same child 3 years later appearing happy and healthy. Success stories.

These kiddos are amazing.
They are fighters.
They prove day in and day out that CHD doesn't have to be a death sentence.

Then there's that word. Death.
There are statistics like "Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood."
There's the realization that our little girl is one of of those children taken too soon.

And here I a loss for words. Blank. Sad. Angry. Empty.

We have walked the CHD path...felt the fear, watched our child fight.  Now we honor her and hope with all of our hearts that in the future no parent has to experience the loss of a child due to a broken heart.

Charley Bear recovering from open heart surgery at only 1 week old.

Yes, I'm still taking part in awareness week...but this year I'm doing it in a much less "public" way.  I'm telling people about Charlotte in more intimate settings.  I'm encouraging pregnant co-workers to request pulse ox screening if their hospitals don't already screen.  I'm making sure that people understand, that they are educated.

Please help us in our mission to educate others.  Share our story.  Arm yourself with facts.  Have an "in your face" moment (!) with a pregnant friend to tell them the importance of screening.  Every little bit helps.

Visit the Children's Heart Foundation website and CHD Fact Sheet for more information.  

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