A few thoughts on Congenital Heart Disease

The world of Congenital Heart Disease (CHD) is wild. It is unpredictable. It is joyful. It is painful. Last night, we lost another heart baby we knew. She was two and a half months old. She was doing so well. Gracie had the same heart condition as Emerson. Although she had more complications after the Norwood, she was making serious progress home. Then her heart just stopped.

It is incomprehensible to me why this should happen. Gracie was doing so well. She was growing so well! She was working on infant development. What happened? Why Gracie? Why?

There is a profound sorrow in my heart today. I have spent a lot of time in prayer and a lot of time holding Emerson since I found out about Gracie. And I still find myself wrapped in sorrow.

One thing the heart world has taught me unequivocally is that everything can change in an instant. There is no normal. And everyday is the most valuable day you have with your child.

Please pray for all those families out there who suffer loss of a child. And make sure to hold your child a little tighter than normal. There are no guarantees; losing one child does not mean another child is safe. Not for CHD warriors and not for healthy children.

I continue to place my trust in God as my family continues our journey in the CHD world. I continue to advocate for research and knowledge and understanding. I continue to look for ways to ease the burden of other families. I continue to count my blessings and thank God for every minute of Emerson’s life.