On April 7 my family and I participated in a walk to support funding for congenital heart disease. We met people who had single-ventricle defects or had children with various defects and signed up with the Children’s Heart Foundation. My parents, husband and myself raised over $1500 in honor of Isabelle. It was a small event, but the action of fund-raising for something that could help Izzie gave me hope. Prior to the walk, I stumbled upon the website for an organization called Sisters-by-Heart and found women just like me, diagnosed either prenatally or after birth with Hypoplastic Left Heart Syndrome. These new connections helped me accept that it’s okay to have mixed feelings about this pregnancy, that being positive sometimes can just be too hard, and how to get through those moments of sheer panic. It’s hard to describe to someone how it feels to go from just wanting to know the sex of the baby to hearing that your child will die without treatment. For weeks I couldn’t bring myself to think of a name. I made the mistake of trying to learn about HLHS in all the wrong places. Finally I found Sisters-by-Heart and received an email from a woman who put all of my anxiety, sadness, disappointment and fear into words. We received a beautiful care package from SBH, full of things we will need for those first few days after surgery. I became connected to two more groups on Facebook, Families of Children’s Hospital Boston and Heart Mamas. I learned about the different surgeons and what questions to ask the cardiologist at the next visit. Through those connections, I was able to empower myself to keep moving forward in spite of my tendency to look on the dark side of things. My latest connection, Linked by Heart, will allow us to meet other families who are in our area. I am no longer consumed by the diagnosis.
This has not been easy, not by a long shot. I have a teenager who’s main purpose seems to be testing my sanity. I have a two-year old who will find the most dangerous item in the house and think it’s a great idea to play with it. My husband and I work full time and just moved into a new home two months ago. I think of how our children will handle us not being home for the first few weeks. I worry about my job and what if I am out for longer than I anticipated. And of course, the unspoken thought of what if we do all of this and it doesn’t end well in spite of our efforts. It is when those thoughts creep in that I have to think about the other moms who felt the same way and get inspiration from them.
Not every baby with HLHS will have the same complications or issues, and that has allowed me to step back from the obsession of finding every possible worst-case-scenerio. Right now I am in a good place, and it can change at anytime but the difference this time is I know who I can reach out to that can help me out of it.