I Do Not Want To Do This

I do not want to do this. There is something inside of me that rebels. I just don't want to. I just don't want to watch or be there while CF makes its final assault. It was so much better when it was in the future and not in the now. But here it is and I cannot say no to being a witness and part of the infantry fighting back with all that we have, all that Anna has. The strength and determination that swings at the obstacles, coughs out the polluting crud and trudges through the trenches is nothing but inspiring. The hope that beckons from the eyes of friends who have been there and now are on the other side with new lives is what we strive for everyday.

I do not want to do this. We just moved to a new house not far away but far enough to make a regular commute an added stress that tips the balance. I do not want to make another home in an apartment where I do not really belong. It is a family crash pad to land and sleep while we work along side of Anna pounding her body like the sides of a ketchup bottle to get that &>*#$%! crap out of her lungs. Liquid oxygen tanks are in her living room with long plastic tubes tethered to her nose and trailing through her condo. She spends hours and hours a day in the battle. This is what life is at this time. We try to find a window of time when there is no medicine, pounding, high calorie eating, or talking with "medical people". It is rare to find but she has worked to carve out and find those moments. The other day she was able to celebrate her sister's graduation and on another, her dear friend's wedding and on another, we had a frozen yogurt. Today we may go out to breakfast carrying a portable tank to the restaurant. But at least it is something other than the relentless.

I really do not want to do this. I really do not want to see her exhaustion, the lack of vitality when at 29 she should be eager to run out the door engaged in her life outside. Now it takes hours to just get ready for the day and a shower is a major event. I took care of her as a child. I was a devoted mom, a stay at home mom loving every minute of it. CF lived with us, haunted us, challenged us, interrupted us, scared us, exhausted us, but my little girl could run from the house into her life with energy and a giggle in those days. But this stay at home mom, in the prison of CF mom, in the never ending fight against chronic lung disease mom watching its clutches on the remnants of lung is not what I want to do. This stay at home mom wants something else. We are fighting to get out of here, to run out the door.

I do not want to be here. We are in the "we do not know". We can decide to call it the Now, but I still do not want to do this. In the Now we work so hard to beat this thing. But in the Now, if we are present, we are supposed to find more than the struggle pressing in upon us. It is here where we find the tender moments, the gentle love, the comments, "I cannot believe what it will be like to have so many more hours to my day without treatments. Just think of what I can do. You can save the world in that time." That makes me want to be here. In this Now there is nothing I would rather do than to do what I do not want to do. To give it my all, to fight this damn disease to the final punch until the miracle we are ordering finally arrives and I can hang up my stay at home mom, fight CF mom hat and run out of here with her hand in mine!