A year ago a fellow heart mom came to visit me after I had given birth to Isabelle. She brought her young son who also has HLHS and her dad. She knew that I was sober and that my anniversary was in August and that I wouldn’t be able to celebrate or get a new medallion because of what was going on. Her father had been sober many years and knew that I needed some contact and put his hand out. He gave me his 12 year medallion and a framed serenity prayer for me to look at while sitting at Isabelle’s bedside in the CICU. For those of you who don’t know anything about 12 step programs, that is an excellent example of how one drunk helps another without even knowing that other person. All he knew about me is that our child had the same disease as his grandson, and that I was an alcoholic who wouldn’t be able to get to meetings for a while. That’s all he needed to know and there he was, medallion in hand.
12 Step programs aren’t about sitting around a room in a circle, whining with a cup of coffee in your hand while reciting slogans. It’s about changing from being a selfish person to one that cares about other people and in the end, benefiting from that goodness ten-fold. I feel fortunate to be part of something that has helped so many people. I have a sense of purpose in addition to my daily responsibilities. That purpose helps me when I am not able to stay connected or are in positions where there is a lot of alcohol around. I don’t miss it.
The phrase ‘One Day at a Time’ used to be on my car when I was a senior in college. It reminded me of who and what I was in spite of being surrounded by drunk college students. It helped me get through many days of cravings, wanting to be like everyone else and to stay on track. I thought I understood what it meant. Isabelle taught me how wrong I was.
When we found out that she had HLHS and were told that she was safe in utero, I slowed down and relished every pregnant minute. She wasn’t born yet. At that moment she was safe. I could breathe and be with her. After she was born and we handed her over to Dr. Emani for her first open heart surgery that would involve a shunt and reconstruction of an aortic arch, I spent the whole night before touching her face and held her as much as I could. I may not be able to be with her during surgery, or control the outcome, but I could certainly be with her for that moment, those hours before that surgery.
When we were going through the Interstage period and couldn’t be with family because of illness, I reminded myself that I’d rather have her for future holidays with us, instead of taking the risk. For the moment, she was safe and we got through each holiday together. When I would see other families lose their children, or not be able to hold them because of being intubated, I would hold her close. Every minute was special. It still is.
One of my favorite moments in Disney this past week was when we were walking back to the buses to head back to the resort after the Electric Parade. The fireworks show was going on over Cinderella’s castle and Jiminy Cricket was crooning “When you wish upon a star…” I turned around to see the fireworks as he was singing and thought of what I would wish- and immediately teared up thinking of all my heart mom friends. We would all wish for the same thing- to have our children whole. To have them be with us forever. To not need any more surgeries, or blood draws, IVs or X-rays. I thought of all the moms waiting for their childrens’ Fontans and of moms whose children became angels this year. And then I thought about my wish to have Isabelle with us forever, to have a whole heart. I looked down at her and she was looking at me with her big blue eyes and little smile. Her wish would be to be with us, and all we have is this moment right now. One day at a time.