We had an amazing trip to the beach!! Michael and Abby (due to the generosity of some very kind people) got to take surf lessons while we were down there. The salt air is so good for them because it replaces some of the salt they are lacking. In fact, one of the medicines they are on was discovered by surfers in Australia. It is a 7% salt solution called hypertonic saline and being at the beach is just like getting a treatment of it. One of Michael's dreams was to learn how to surf so it was wonderful to see it come true. I can't even explain how I felt seeing him on that surfboard. I admit it, I cried. When we were done with surfing at Wrightsville Beach, we went back to my parent's home at a different beach and were just in time to see some baby loggerhead turtles being born! It was moving to see them start out on their journey. While we were standing there watching them be swept into the ocean, Michael took my hand, looked up at me and said "This is a day in my life I won't ever forget." I'm sure I won't EVER forget it either. When you are living day to day and moment by moment, it means so much to be able to give your children a memorable day.
I can't even describe how difficult this journey has been for us. I personally struggle a great deal with Michael's prognosis. This is the most contradictory set of emotions I have ever had. I want to move forward to know what is going to happen and yet I want time to stand still. I want to know how much time we have and yet I don't want to know. I know in my heart that I should just enjoy the time we have with him but I have this endless loop of questions and "what ifs" that run through my mind. I am strong one day and overwhelmed, paralyzed with fear the next. It feels like we are just spinning our wheels and it is maddening. I want to move forward and I don't because moving forward means transplant. It means putting Michael through a huge, risky procedure. It means trading this life for a completely new one. It means not knowing what is on the other side. It means no cure will help him. It means a long, drawn out hospital stay away from home. It means a risk of lymphoma. It means switching to hospice and changing his full code status to a DNR if lungs don't come in time. It means losing my child and I can't face that. Yet it's something I face every day. Most parents don't question it to hear their child talk about what they want to be when they grow up because they just assume that their child WILL grow up. Michael talks about what he wants to be when he grows up and I don't care what he wants to be, I just want him to have the opportunity TO grow up. Some days I feel strong and some days I don't. Maybe tomorrow I will feel stronger and maybe I won't.