One of my heart mama friends is posting various commentaries written by other mamas on specific topics to raise awareness for Congenital Heart Disease this week. The topic I wanted to write about is how the diagnosis of CHD affected my faith.
There is a story in the Old Testament about a woman named Hannah who was childless and prayed for a son. She went to the Temple in Jerusalem (I think- I am assuming it was there because…well….there was only one and that was it) and pleaded her case to God. A temple elder thought she was drunk and scolded her but when she told him why she wept, he softened and prayed with her. She promised that if she were to get pregnant, she would dedicate him to God.
I prayed in synagogue when I was pregnant with all of my children. I made my own promise of dedication in exchange for healthy babies whom I would love. On March 5th, God gave me His answer. Hypoplastic Left Heart Syndrome. My baby would not live without surgical intervention. It still takes my breath away.
Here’s the thing- for most people, CHD brought them closer to their faith. For me, it had the opposite effect. I was (still am most days) angry. I want to know why He gives mothers babies and then takes them- through no fault of their own. I want to know why he has given me the good chance that I will outlive my daughter, that she has a 50% chance of making it to adulthood. Why would He do this to me and countless other people?
After seeing another mother lose her baby after receiving so much hope, I lost it. I couldn’t bring myself to say that I would send prayers to people who asked for them. I am afraid to. I feel hypocritical doing so. Part of me ‘wishes’ that the child recovers or the parents receive the strength they need, but I cannot formally pray. I try. Especially for the mamas I have come to know and love, and whom I know believe so I want them to get what they need.
I had faith until it became clear to me how much I had to lose. Isabelle’s middle name is Faith. When I was terrified of what we were getting into after her diagnosis, I wanted to remember what would hold me together in spite of my anger. Sometimes it occurs to me that we were chosen to have Isabelle. She is such a love and has blessed my family in so many ways. She has shown me a strength I never knew existed in myself. In those moments, my faith comes back for a little while until the fear creeps back in.
My hope is that once again I will get to a better place with all of this and be able to open my heart to the God I loved. There was a time I really believed that I was the daughter of God and He loved me. I wrote it in my journal after struggling through my first year in sobriety after hurting so many people including myself. I felt so awful and my good friend told me that I shouldn’t be so hard on myself, that I was loved by something greater than me. It helped me get through some really down days when I could barely look up from the sidewalk. . I had faith until it became clear to me how much I had to lose.
A very wise woman once told me that faith is the absence of fear. I know she is right.