I just wanted to share one more post in regards to Congenital Heart Defect Awareness Week (Feb. 7th-14th). It's such a special and important week for all of us heart families whose lives have been dramatically changed by a child with a CHD.
One of the pledges that our family made when we found out about Quinn is that we would do whatever we could to support and promote awareness of these children --- whether it was through sharing her story, financially supporting various foundations, participating in "heart walks", etc.
Yet, it can be overwhelming where to even begin. The need is overwhelming and yet, while there are organizations out there to assist in a variety of ways, I never came across one that offered a comprehensive look at CHD's.
Early on in Quinn's diagnosis, I discovered that a girl I used to play soccer with at LSU had a son with Tetralogy of Fallot (a "cousin" of sorts to Q's disease). Thank you, Facebook, once again! Anyway, their son had surgery a few years back and is absolutely thriving. It was another story in my hope chest that continued to give me faith that our little girl was going to be fine.
Their family has felt so passionate about the all-encompassing approach to CHD's (research and expert advice, patient advocacy, stories of inspiration, and even "patient pages" where you can keep family & friends updated during times of surgery, etc), that her husband created an amazing website and blog, http://www.heartwaves.org/. They recently launched --- no coincidence right before CHD awareness week.
I HIGHLY encourage all of my heart parent followers to go take a peek at their website and become a follower on facebook - and please share with your fellow heart friends! I have loved every single blog entry they have posted because they have covered the full spectrum with an amazing amount of honesty, integrity, and HOPE.