Tonight

I am a mess again. I swear. I truly thought that this time would be different. It WAS different. We were there.. we were in and out even with all the excitement of the OR day (which I will post about later but I am too tired tonight) it was different. Ky looked great. And then came tonight.

Why is it that we cannot catch a break? Why can it never just be normal or easy? Why do I continue to ask WHY when I know that I will never know the answer to that question . I am sitting here with my head pounding and my heart is heavy. I am so confused and once again I find myself KNOWING that something is not right yet ignoring it. Thinking that if I ignore it it will go away and I will not have to deal with it. I will not have to have yet another fight with my husband who downplays EVERYTHING and still after two years of doing this thinks that I am overreacting.

Why? Why am I always overreacting? Can I not just be cautious? Is that not acceptable to err on the side of caution? Why does everything have to be such a damn big deal?

When you LOOK at Ky you would think she is fine. But, I , who know her better than anyone else, know that this is never true. She is never just fine. There is always something that lies below the surface waiting to rear its ugly head and cause a big ordeal. I know that her body lies. I know that THIS is the kid who comes out of the OR standing and kneeling on all fours when they SAY that there is no logical reason why if she is in that much pain that she should not be knocked flat on her back. This is my child to extubates herself.

When I left the hospital on Wednesday I felt free. I felt like we were finally free. Free from all this heaviness that has constantly weighed us down for the past two years. I felt like I could move on with life and finally start living again. You see, I have been living a life "on hold" for nearly three years now. Holding my breath until I was blue in the face. Hoping beyond hope that one day things would change. How many times must one's hope be crushed before you loose hope altogether?

Tonight I am back to that scared and confused mom that I promised myself I would never be again. I am back to not KNOWING what to do. So I will do what I always do. I am going to do some research, talk to a few people, co check on Ky, and then I am going to go get in my quiet place and figure out what the hell to do.........