Many people have been recently talking about Jimmy Kimmel’s recent monologue where he shared that his newborn son was born with a congenital heart defect and underwent surgery in his first few days of life. If you haven’t seen it I highly recommend it, its a very touching video showing the emotions of a scared and grateful father.
I pour a lot of my emotions into this blog, I try to be raw and reduce the stigma of struggling with emotional and mental health concerns as a mom. I try to break down the myth of a perfect mom or that motherhood is joy 24/7. I try to be real because I know that being real can help other mothers feel less alone. But for some reason I’ve been hesitant to share something here.
At our 20 week ultrasound my husband and I were told that our unborn daughter had a potential heart defect. I didn’t want to write about it because I was processing it still and there was so much uncertainty leading up to the birth about what was actually wrong with her. I couldn’t write about what I didn’t know and the only thing I could really talk about what the intense uncertainty we felt and how hard that was to deal with and every time I sat down to write I couldn’t process it into words it was this ball of intense anxiety and dread and I was almost so afraid that if I wrote it down it would become more permanent in some way. I talked to many family and friends about it so I didn’t keep it inside but most conversations huddled around what was going on, what did we know about her, what were the medical decisions that were going to be made by the doctors. Not many people truly asked how either myself or my husband were coping with all of it. But I understand that, its really hard to open that conversation with someone when you don’t know what to say or you can’t truly relate. In some ways I felt alone along with my husband but in others I was immensely supported.
Flash forward to my birth- my beautiful birth. A small bit of pitocin, an epidural (because thats my choice and my jam ;)) and about 10 pushes and she entered the world into a room filled with doctors and nurses. Luckily she didn’t have any signs of distress and I got to hold her for 15 minutes. It took me awhile to grieve before she was born that I wouldn’t have her in the room with me and that she would be in the NICU but in that moment as hard as it was to hand her over I did it gladly, knowing that we needed more information to make sure she was okay and if that meant a heartbreaking separation fromm her- so be it. Several days and tests later and she was diagnosed with a mild form of a very serious defect called Hypoplastic Left Heart Syndrome. A couple weeks later and another defect was confirmed, a very mild form of coarctation of the aorta. Very mild. Those two words couldn’t be more comforting. Before her mild was my preferred type of salsa and now its my preferred type of heart defect.
Her future is uncertain but as my sister in law reminded me- so is everyone’s. No one is safe from heart issues, cancer, accidents, anything. That would normally be so daunting of a statement to someone with anxiety issues like me but because I was so afraid of what would come in those first few days of life I find myself appreciating the moment so much more than ever. Today she doesn’t need surgery. Today she is breathing and nursing and kicking her legs and feet. Today is a gift.
I also received the gift of being a part of the heart parent community. I am so incredibly inspired by these parents who have been through so much and so much more than me. And when I’m overwhelmed about her future and what could happen that I can’t breath and tears are rolling down my cheeks I think of those parents and believe that whatever is on our path we are up for and we can manage because we are a strong family, we have so much support, and because those same heart parents will be rooting in our corner.
Our journey with our daughter has given me a profound gratitude for the present moment and how letting go of the anxiety over the future and the anguish about the past can truly be liberating. We can experience fully the moment even when the moment is difficult and this makes us so very alive. I don’t know what I believe about the meaning of life and our purpose here but I know when I am in the moment holding her, smelling her head, hearing her cries even that I am so very much here with her and the precious present.
My daughters heart defects have perfected my own heart in a way by giving me the grace of gratitude and the gift of living in the here and now.