Here we are again, Congenital Heart Disease Awareness Week, this past year we have been able to pass the Congenital Heart Future Act with the combined forces of the Adult Congenital Heart Association and the Children’s Heart Foundation among other advocacy groups. A victory that was years in the making and now the hard work will begin in trying to make a bill a reality.
As much as I like to promote awareness this week as a survivor, I find this week a sobering time for a few reasons, but mostly it is when I reflect on the ones that we have lost. It has been a hard year in the CHD community especially for its teens and adults. Many of my friends who I only knew from Facebook or through this blog who were teens that looked up to our stories of surviving, have passed away, and most of them were sudden deaths that didn’t have much explanation other then the fact that congenital heart disease can take you anytime. It is hard to accept that fact especially the older I get because I truly value each day I wake up and get to do the things I love and to have that suddenly stop is a thought that until this year didn’t seem so close to home.
As we enter Awareness week we all feel like we lost a cheerleader who railed us all year long. Who told us the hard facts with humor and southern charm. You always seemed to know when Steve Catoe was in the room because laughter sprung up around him. He was so good at poking fun at life with congenital heart disease but followed that up with passion that made you think he was ready to lead us into a battle. With his sudden passing just two months ago we all took a pause in our lives to mourn him but to also realize how precious our lives our bodies are and the fine line we battle every day.
So as we start awareness week I remember the ones that didn’t make it but believe like they did that we must carry on without them. Their lives will forever change who we are, and help us be better people and dream bigger and fight harder. So today I dedicate to all the warriors who were lost this year for they are our true hero’s and forever will be in our hearts.