The days between Rosh Hashanah and Yom Kippur are called “The Days of Awe’. This is when one is supposed to reflect on the past year and prepare to make amends on the Day of Atonement along with the entire Jewish community. I was told that Yom Kippur is considered a joyous holiday, because it reminds you that in spite of the wrongs you have done, you are not alone in committing wrongs. It takes courage to stand in front of God and freeing to know that you are not alone.
I learned about the freedom of no longer feeling alone and isolated when I walked into my first AA meeting almost 20 years ago. It is something I have never forgotten and consider it one of my first blessings of my new existence. I sat at the table with a weak cup of coffee and listened to people talk about what they went through when they succumbed to alcohol. Anyone else would consider the stories humiliating. I couldn’t believe people were talking about the same feelings I had, did the same stupid antics I did and for the first time in my life I felt like I was right where I needed to be.
The same desire to reach out and seek similar experiences was what drove me to find other heart parents who were walking through similar challenges to us. I knew that by connecting with others who shared this experience, I would get the support I needed to get through the pregnancy, delivery and her journey towards life. I know I have written a lot of what HLHS has taken from me, but there are some unexpected gifts I have been blessed with along the way.
I have met some incredible moms thanks to Isabelle’s defect. Moms who could tell me what to expect before and after surgery. Who could give me advice on how NOT to strangle the nurse. Moms who could console me when I couldn’t nurse the way I wanted to. Moms who came to visit me, who took the time to take pictures of my beautiful girl while their son was also in the CICU, moms who went out of their way to meet me and show me their beautiful children. I also met some great Dads too.
I have also seen many families in turmoil, and have seen their babies become angels. Babies who I have gotten to know through these connections and feel pain for their parents whom I have never met. I have also seen children get through their hard times, and fight to go home. These situations have forced me to be completely in the moment with Isabelle. Not just give the One Day at a Time lip service bullshit, I mean really be in the moment, breathing her in, loving her. She is with me right NOW. She is with us right NOW. Right NOW I have three beautiful daughters with me. When I hold her, I close my eyes and I can almost feel time stop. Feedings are not such a make or break situation, and I have given myself permission to freak out only if it continues for more than 24 hours.
This brings me back to the Days of Awe. This is also the time where our names are inscribed in the Book of Judgement. Who shall live, and who shall die. As I see more and more people lose their children, I feel like I am clinging to Isabelle wondering which Book our names will appear in. The sheer randomness is terrifying. I have to pray that the pen makes the choice I want. Again, being forced into the corner of prayer because frankly, I have nothing else. Each day brings another Angel and I cling to her. Who shall live and who shall die.
When I see that another baby has lost their fight, I wonder what makes them different from my own. Some situtations are drastically different and the odds weren’t that great to begin with. Others, not much. I know what a miracle Isabelle is. Today she had a cardiologist appointment. Another great appointment telling us how amazing she is. Her weight gain is slow, but we are discontinuing the Captopril so hopefully that will help her appetite a little. Maybe increase the lasix by a half dose too. Either way, the cardiologist was extremely pleased and that brings me some peace. I wish other families were blessed with that peace.