Let Hope & Faith Be Your Guide

We have so much in common, even though we have probably never met. There is an instant bond between parents on this HLHS journey, even though each of our warrior’s paths is unique. I think it is because none of us ever expected our child to be born with HLHS and only those in our shoes really understand what the reality of what our life is like. HLHS impacts every aspect of our lives and becoming a heart mom or dad changes us forever. It is both the hardest and greatest thing we will do in our lifetime. Regardless of where you are at on your warrior’s journey, please know you are not alone. We are in this together and there is so much hope.

I am doubly blessed to be the mother of two HLHS warriors, whose journeys have been on opposite ends of the spectrum. They have given me new purpose and I am passionate about providing what I have been searching for since I heard the term HLHS for the first time. I have created this site with the intention of bringing our community together and providing us with a place where we can be vulnerable, gain strength, feel understood, find hope, gain perspective, celebrate our warriors, and share valuable resources. Above all else, I hope you feel like you have found a place where you feel truly seen and the resources you need to sustain you on the journey. Together we can do hard things!

The biggest lesson I have learned navigating my way through having two children diagnosed with HLHS is to embrace the journey. Embrace both their individual journeys and your own. I read every blog I could get my hands on when Ava was diagnosed and found myself disappointed and terrified when she didn’t follow the paths forged by others. What I learned the hard way is that every child born with HLHS walks their own unique journey and no two are ever exactly the same. I share my children’s stories to provide you with hope for the future, not to predict what lies ahead for your warrior. Anything is possible for kids with HLHS, and I cannot wait to hear about your amazing warrior’s journey.

Warriors of HLHS has been a labor of love for me ever since the idea to create a gallery of hope and celebration came to me in the middle of the night. It combines my three passions: heart warriors, photography, and storytelling. I wanted to highlight heart warriors of all ages from all over the world who are thriving with this condition. Being born with half a heart is only part of who they are, and I want to celebrate all the amazing ways these incredible warriors are living wholeheartedly with HLHS every day. My hope as you view the gallery is that you are inspired by their spirit and leave hopeful that it’s possible for our children to thrive into adulthood with HLHS.

For me, the hardest part of our HLHS journey has been figuring out how to live and thrive with this diagnosis. I was able to find information about the surgeries and common complications, but I was never able to get an honest and raw glimpse into the realities of this journey. I wish I had been better prepared for the aspects that would blindside me, like PTSD, marital strain, and how I would fundamentally change as a person. Having gone through this twice, I have a unique perspective and am passionate about bringing our community together to have honest conversations about things we are all struggling with. Regardless of where you are on your journey, I know that together we will thrive with HLHS.