February is heart month and the week of Valentine’s Day (February 7th-14th) is CHD Awareness Week. Every February for the last five years, I’ve written and posted about congenital heart defects and how they affect lives. 1 out of every 100 babies born are born with some sort of heart defect. For some, they are severe and do not allow the baby to even survive birth, or live more than a few hours. For others, they are complex and complicated and related to a host of other birth defects, syndromes and problems they battle throughout their short but meaningful lives. For still others, they are life-threatening, but treated with many reconstructive surgeries to enhance and extend a child’s life. There are those who have a mild defect, one that could maybe go years without notice, or that is treatable with a specific drug, device or procedure. In the “Heart World”, the severity of the defect is irrelevant. These CHD Warriors and Angels are babies born (or lost) with beautiful, pure, “broken” hearts, and they all have amazing souls that match.
When my daughter was born with a very complex, very special heart, I didn’t know anything about those kinds of heart defects. I didn’t know anyone whose child had even one of them, and I didn’t know anybody else who had been through the journey we were just beginning. Now, almost 24 years later, we’ve been with her through 5 heart surgeries, numerous other surgical procedures, hundreds of doctor appointments, months (maybe years) of hospitalization, and ultimately a heart transplant. Things have changed so much in those years. We’ve accumulated a new “heart family”. Among those we have spent time crying with and love dearly, there are others we have never met in person. With these people, we share a common bond and recount our stories and experiences to help offer light and hope during their own journeys. Additionally, there are advances being made in technology and medicine almost daily that will create amazing outcome opportunities for the CHD warriors being born today. It’s an incredible, heart-wrenching, and faith-filled world I’m grateful to have had the opportunity to be part of.
The past couple of years, I’ve had a little different focus in my posts. At first they were full of statistics to help create awareness and a call to action, but I’ve since felt like they also bred pity and sadness. That’s not what I want people to feel. For that reason, I am much more reflective and focus more on how having a child with heart defects has affected my life. I wouldn’t be who I am today without the journey I’ve been on with my heart warrior. She has affected the world around her, and by her example of gratitude, faith, positivity and perseverance, she has also helped change the lives of many more people than just me.
If it weren’t for CHD…
- I wouldn’t know how miraculous the human body is.
- I wouldn’t have learned how to simplify and decide what’s most important in my life.
- I wouldn’t have realized that it really is true that “tomorrow is a new day”.
- I wouldn’t have learned how to trust God and accept His will and timing.
- I wouldn’t be so grateful.
- I wouldn’t recognize God’s tender mercies and daily miracles as easily.
- I wouldn’t have had as much experience with God’s grace.
- I wouldn’t know how many people love and support my family.
- I wouldn’t have learned that my needs are important too.
- I wouldn’t know how to help other people through their struggles.
- I wouldn’t understand that my Savior really knows and loves me, and that he can comfort me because through His suffering in the Garden, He knows exactly how I feel.
Because of congenital heart defects, I’m learning to live my life on purpose…with a plan that’s usually not my own. And I’m learning how important it is to just love. <3
(You can read more about Sarah’s journey on her blog, Sarah’s Second Chance.)