Daily Archives: May 29, 2016

I’m sorry

#KatherineTheBrave is completely immobile. She cannot move her legs or arms, strategically, 95% of the time. She is completely reliant on diapers. She sleeps most of the day. If she can stay awake long enough, she will eat, but swallowing is shaky ground and, more often than not, impossible for her to accomplish. Foods not processing in her at all, everything comes out at mush. This isn’t a newborn baby. This is a 7 year old suffering from terminal brain cancer. It’s expected, and as hospice calls it, “disease progression.” So we hurry, and wait. 
While we wait, we try to entertain her. She decided she wanted to do Legos today. We had no more! So I ordered two small sets on Amazon prime now, two hour delivery, and she had some to do. I hold them up so that she can see me do them. I cry through the entire process. So does David. Seeing her like this is killing us. She watches intently. In and out of sleep. Not able to move her fingers to help. She just wants to touch them sometimes. Just feel them again. So I let her.
She misses it. Being a kid. I’m dying inside. I can’t stand this time right now. I take back every negative thing I’ve ever said to her when I was frustrated. I told her that today. I am so sorry. I would get frustrated when she would act off, when all she was doing was struggling to be a big girl. Trying to be herself, and a kid. Inquisitive and interested in what we were doing and trying to learn her own way to move forward. I take it all back. I take everything back. I’d do anything to go back there again. Anything.