Home again and all is well. We had a good day. We had great start with the Cycle for Life Board Meeting. It was great to hear everybody express their excitement, not to have just a great event, but to raise as much money as possible for a cure. The passion in everybody’s voice was so evident as everybody gave their inspiration to fight against CF. I have to say that I was overwhelmed and had nothing to add except that we fight, everyday with everything we can think of, to make sure that Sutton and every other Person with CF will say goodbye to these days. The hours of care and treatment that those fighting against CF go through every day will be gone. People are passionate about many things, but I have never encountered a more passionate group about curing a disease. One day, very soon, CF will stand for Cure Found! We have such great momentum, we can’t slow down.
We got the good word this morning that we were headed home. The process took the better part of the day in order to get all of the prescriptions lined up and all the paperwork in order. I am also willing to bet that it was delayed so that everybody had a chance to say goodbye. It was almost like the end of week at summer camp. We were ready to come home, but the nurses and staff on 5 west are like family to us.
As I was packing and taking everything to the car, I left Sutton in the care of the nurses in the room. WhenI returned to pick her up, she was gone. The shades were open and the room was in an orderly fashion, almost as if we hadn’t been there. I stood there for a second, wondering where my Little Button had gone and then went back to the hallway to find her in the arms of the nurses. They were loving on her and saying their goodbyes. They said they can’t wait to watch her grow up. Wile they don’t ever wish her to have to return, chances are that she might have another stay at some point having CF and they already imagine her running the halls, playing and having a good time.
I’ll try to do better with updates. Probably not as often as the past week, but will keep important news posted. Thanks again to all of you who support us. We are happy to be home together again.