Worries

Any mother will tell you she worries about her children, but the worries of a mother who has a child with a terminal illness are profound. In the last few days Nicholas has been extremely floppy and he has not been wanting to feed himself. He has also seemed to have difficulty using his right hand. I noticed these things, but didn't become concerned until my mom pointed them out to me on Tuesday afternoon when I picked Nicholas up from her house after work. I guess there's something about my own mother pointing out my child's weaknesses that made it very real to me.

I am hopeful that Nicholas's lack of strength has to do with teething or a growth spurt, which would make sense considering that he has had periods like this since he was around 6 months of age. They seem to last a few days up to a week and eventually his strength always returns. In the back of my mind, however, there's always that nagging question, "is this the start of the end? Will Nicholas's lack of strength just continue to decline?" I hate having to wonder all the time when my child is going to become ill. I hate having to think about him not being here with us. I hate that I have days clouded by utter despair. Days where I don't want to leave my house, don't want to do anything, don't want to leave my child's side. These days seem to be more frequent lately and I sometimes wonder if it's just now hitting me, if the severity of Nicholas's diagnosis has just now struck my heart. I hate that people look at him and tell me how cute he is and then say how tired he looks because he doesn't move like other kids. I hate that I sit here crying while I type this post because I truly love my child with all my heart and I would trade place with him in an instant. As a mother, I want to take this away from him. I want him to experience life without the stares, without the questions, without the handicaps.

I hate this disease and all that comes with it.