It was one year ago today that we learned about Hana’s enlarged heart. It has been, without a doubt, the most transformative year of my life. It has touched us in ways I can not describe. We have been so blessed by all the support we have received. It has come from family, friends near and far, friends we haven’t talked to in years or decades and even strangers. It has been truly amazing. I am in awe and I am humbled.
This time last year they (the cardiology intensivist and neonatologist) had just finished hours of work trying to get an arterial line started and they were unsuccessful. They could barely get two IVs. The neonatologist bought us coffee. All night I sat in a chair by Hana’s bed and tried to comfort her as she tossed and turned. I might have dozed off for 30 minutes. We had no idea yet how bad it was.
Its amazing how quickly life can change and in ways that are swift and heavy and shocking and full of fear. The best we can do is ride along with it. I learned that people care, or, they can care, if you show them what to care for. People care about Hana. And they care about Paul and me but they really care about Hana. And how easy she makes it! Somehow she rallies people around her. I am amazed by this. She also handles things with so much courage. With all things unpleasant, I am there to provide comfort for her pain and witness to her fear and suffering and then to help her move on.
We are so grateful. Things are going really well. Being grateful makes me happy. It’s not too hard to be happy here. In honor of the one year anniversary, I registered myself as a bone marrow donor. I’ll do what I can.
Hana is doing really well. She is sleeping better. She is babbling and signing a lot. Her walking gets better every day.