Sunday, February 9, 2014

Congenital Heart Defect Awareness Week...

Feb 7th - 14th...This week is special to our family.  This is Congenital Heart Defect (CHD) Awareness Week.  7 years or so ago, I wouldn't have given it much thought.  I would have thought in passing..."That sounds like a really good cause."  But I would never have allowed myself to go really think about what that means to so many families in this world.  Did you know that 1 in 100 infants born, suffer from some sort of CHD?  Did you know that?  I didn't.  Honestly, I guess I don't know much about any of the other causes that haven't directly affected me or my family yet in my life.  I DO know this, though...I'm much more empathetic to those things now.  They are all so important, and raising awareness about such things is incredibly important.

I want to introduce someone to you...her name is Meghan Roswick.  She was born in 1991 with Hypoplastic Left Heart Syndrome.  I stumbled upon her page on FaceBook.  It was an accident.  I don't follow anyone connected with CHD on purpose. I don't belong to any support groups...I don't read other heart parent blogs.   It's ridiculous, and I know I should...but it makes it too real for me.  I don't's just too hard, it's not my thing.  It would make me admit that Lia might not be able to live a "normal life"...and I can't go there.  Regardless, I accidentally found Meghan's page on FB.  Let me tell you a little about her.

Meghan was born with a similar "single ventricle" anatomy as Lia.  Meghan basically is missing her left ventricle, where Lia is missing her right.  She had 4 open heart surgeries by the time she was 3 years old.  Meghan grew up a competitive gymnast.  She is now a competitive free-style skier.  Snow skier...  Here's the most amazing thing about her to me...she just ran her first 15 K race.  That's right, folks.  She just ran 9.3 miles.  Ran.  9.3 miles.  How many of us with whole, healthy hearts do that?  Not many.

Meghan is definitely not the norm...let's be clear.  I realize that.  She admits it took her a very long time to train for the 15K, and that she ran it slow.  But who cares????  I find it amazing that she is able to do that.  The thing that has stuck out to me while reading her FB page is that she says that the doctors never knew what to say to her parents about activity and limits.  They actually said to her mom as they discussed her starting competitive gymnastics when she was little..."Her level of activity is either what has kept her alive...or what will kill her.  We just don't know."  Wow.  She's now 23 years old.  She's still living an active, healthy life.  This kind of story fills my heart.  It does.  Again, Meghan's story, her life, is not the norm for a HLHS or single ventricle heart.  It's not the norm... but then again neither is our Lia.  So there's that.  

This is what we want for Lia.  This is what we want for all three of our kids...for all of our friends' kids.  We want them to live.  We want them to live courageously, with all of their hearts...with strength and perseverance.  This is the way we should all live...always pushing forward.  Never looking back.  Not afraid of failing.  Not afraid of anything.  Just strong...we should all live strong, for as long as we have to live.  

In celebration of Congenital Heart Awareness Week and in celebration of our Lia...we took a few photos today.  My very talented sister Laci (Laci Nottley Photography) took and edited these pics.  They are priceless to our family, to Lia's story. 

This next pic pretty much sums things up...yep, most definitely.  It's gonna take a lot to get past these 4 protective boys...

So this week...we wear red for our heart hero.  We wear red for all of the heart hero's out there.  We wear red for all the heart hero parents.  These parents are tough.  These heart kids are tougher.  Help us raise awareness for Congenital Heart Research.  

Looking for more info?  Need a good place to donate your money for an incredible cause?  Take the time to look at the Lauren Elise Memorial Foundation at .  Read about Lauren, her incredible family, and her legacy. 

"Here is what I am commanding you to do.  Be strong and brave.  Do not be terrified.  Do not lose hope.  I am the Lord your God.  I will be with you everywhere you go."  
Joshua 1:9 NIRV