I'm the mother of three amazing souls, Shea, Lee and Rosemary. I have always loved sharing my joys in life with people. Then I found myself guiding my family's ship through the troubled waters of Rosemary's 4 open heart surgeries, and over 15 months of living in hospitals. I wasn't sure how to share our trials and triumphs. My blog became part of this website. Rosemary's journey ultimately led me back to nursing. I became an adult cardiac RN in 2014 and a lifelong CHD advocate.
When I found out that I was having a baby with congenital heart disease, I didn't know what it was, how to process it or how to explain what was going to happen to my baby. I felt scared, isolated, unsure of what this would mean for my family's future. Educating yourself is key in becoming a good advocate for your child. Dr. Google was no help for me...hence my desire to build a collaborative website and HLHS blog to support and empower families.
Education. Pure and simple. I believe that educating yourself is one of the single most empowering things you can do to navigate through the necessary waters of open heart surgeries, hospital stays, and the sheer strength it takes to be the parent of a child with a CHD. You will find a variety of resources and information on the Education & Advocacy Pages.
Also...Constant denial until the hard parts are over. It works for me, always has.