Official diagnosis brings me to tears at Barnes & Noble.

Well, I finally got a call from Kyle's neurologist letting us know what the MRI results were. No tumors, lesions or masses to be concerned about, however, the MRI did show spots called NF1 spots in his brain. All this means, according to the doctor, is that he most definetly has Neurofibromatosis. He wants to see Ky every 6 months.

I knew this already right? I should not have been shocked. But I guess I had it in my head that the MRI would be fine and the doctor would tell me that Ky would be fine and we dont have to see him anymore. I guess I was being overly optimistic. If everything happens for a reason, like I say I believe, then why is this happening to my son? Why him? And I know there could be worse things, I do, but why should he have to go through anything at all?

So after hearing this, I went to Borders to see if they have any books on Neuro. The man there was really nice and politely told me no, we dont have anything. Then I went to Barnes & Noble to see if they had any books on it because I am really striking out online. I go up to the counter where a man was standing. He looked 30ish, tall, skinny with glasses. Definetly looked like he belonged there. I asked him to check his computer for any books about NF1. He says to me... "Isnt that like the Elephant Mans disease, ha ha" I just looked at him. I said nothing as he checked his computer, only to tell me that they didnt have anything. He looked up at me and saw my face, which, I know was pure devastation. He walked me over to the kid-parenting section. Handed me a book on Autism. I just looked at him again. Then he says to me, "I can order a book for you, but its like 790 pages and it is meant for doctors." Oh boy...here comes the tears. In the middle of Barnes & Noble, here I am crying to this skinny little punk that I just wanted to punch. I told him..."Maybe I am not ready for this yet, thank you." As I turned around to leave I hear him behind me telling another co-worker that he thinks he just made a customer cry, bragging, I should say, since there was not even a hint of sympathy in his voice.

I really dont know what to do now. I am trying to come to terms with this but its very difficult when you cant even find any information on whats happening with my son. I have asked his doctor in the past for info. They sent me a panthlet that said hardly anything. All the info online is very vaige or so clinical I cant understand it.

Typing this out has been sort of theraputic and it also made me realize that if this is happening to me, it has to be happening to another mom somewhere. If everything does happen for a reason, then maybe the reason for this is for me to help in some way. I have decided to keep a diary on what goes on with Kyle whether he just ends up with spots or anything else, and write a book on it someday. Maybe my experience will help comfort someone else in the future. I sure wish there was one for me to read.