I have an entire other blog post completed and saved – I was ready to post it when Genevieve came out of her room, unable to sleep and said the words that break my heart every time, “I am worried about my surgery.” No matter what time it is, these 6 words make my world stop. Al and I talk to her until she feels a little better. We cannot eliminate the worry, all we can do is help her to find enough peace to go back to sleep, to rest and to continue on being a child until the next time she is overwhelmed with the worry.
“Why do I have to have surgery? I know the good choice is surgery and the bad choice is to be ill, but is there no other choice?”
My Genevieve, I wish there was another choice. Trust us, we would not ask you to do this – we would not ask you to have to go through something so big if there was another choice. We have turned to the team at Boston Children’s Hospital – some of the very best doctors and nurses in the world – and everyone we know and so many people that we don’t are praying for you.
You are my daughter – an obsessive researcher. I found sanctuary in a card catalog, books and spent a decade working in a library. You have made friends with Siri. We are here for you and we will help you to learn more about your diagnosis, about your own heart. Then we will help you to understand that you are not Aortic Valve Stenosis and Aortic Valve Regurgitation. You are 7 years old, in the second grade. you are a twin (yes, the older twin), you love to dance, write and spend time with your friends. You are our Genevieve – beautiful, strong, and confident. Multiple friends have told me that you sparkle – to me, you are magic.
There is an army that stands beside you – so while this is big, you will not go through this alone – Team Genevieve.