Touch & Go

IThis is my touch and go life. Where one day I am happy and the next I want to scream. Then my son does things not purposely of course, but the disease makes him do things that tears my heart out and guts me slowly. I have people watching him. I have to pay to get more. The hospital is fighting me about assigning him someone through insurance because I have spoiled them with my presence.

My connect at magnacare has helped me tremendously. But their are other sick kids in the world. Now the Rehab doesn't have room until Monday. More delays. Now that is 4 more days of 24 hr watch to make sure he doesn't go at his throat or try to climb over the bed.

4 more days of "something could happen" before he goes to Rehab and is treated properly.

I am tired. I can't begin to tell you how much. I am sick and tired and there is no end in sight.