Today has been a rough day for me. I'm really struggling to deal with the reality of the SMA diagnosis. I have so much anger about the unfairness of it. It has been especially hard today because of the other baby in the room with Eli. He is a one year old and in really bad shape. He has many staples in his head, on a ventilator, and seems to have suffered brain damage. This was apparently done by his father. I can't help but be a little bitter and resentful of the fact that his life was wasted, taken away by a selfish act of anger. I would give anything to have more time with Eli; this man threw his son's life away. I hope I can get my emotions under control so I can sit in the room with my son.
The mom of the other little boy is here and she is having a very difficult time dealing with what has happened. She doesn't speak English, but I hope a hug was enough to show her that people do care. She is under protection and having to be careful of where she goes or what she does. It is very sad to see what's going on. I wish I could do more for her, but I don't know what she needs. I asked our nurse and she didn't know of anything she needed right now. Maybe I will have some ideas before we leave.
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