The Road Keeps Getting Longer...

Every time I think I'm doing better at accepting things for how they are, I have a relapse.  I had to take James in to the clinic today to get checked out for something minor.  I really like the nurse practitioner there and she was super helpful as usual.  She asked a bit about his history and I explained most of it to her. She mentioned that he looked like he had a genetic syndrome. I know she meant well, and was not trying to be mean or anything like that, but it just hit me hard.  I don't want to accept the fact that there is something wrong with James. I want him to be normal. We are still waiting to hear back from genetics to see what the testing showed. It seems like forever. I JUST WANT ANSWERS!!!!
I asked Alex tonight if he would want another child. I love James so much, and would die for him, but I really want a normal son. I will take care of James and all of that, please don't take that the wrong way. My whole dream growing up was to have a son who I could cheer on playing football, or basketball, or whatever sport he wanted, and making the honor roll, and just being a boy. I've lost one already, and James is perfect for who he is, but I want someone to carry on the family name. This is all just a jumble of words. I never dreamed in a million years that this would happen to me. I often question why this does happen to me. What have I done so that I would be challenged like this?

More Testing...

Yesterday was a difficult day for me.  James had an appointment with the genetics doctor from University of Colorado/Children's Hospital.  His intial testing when he was in the NICU at Children's came back normal, but they want to do followup visits to track his progress and see if anything else becomes apparent.  I didn't think anything of it.
The doctor did his exam and checked everything out. I gave my family history and what I knew about Alex's side of the family.  The doctor said that there are some abnormalities that concerns him and that they wanted to do further testing for rarer disorders.  He mentioned a couple of disorders that he has several symptoms for and gave me the names. He also wants to do more tests for metabolic disorders.  He showed concern for James' eyes, and how he doesn't focus very well.
The two disorders he mentioned were Prader-Willi Syndrome and Smith-Lemli-Opitz Syndrome.  He kind of explained them, but it confused me.  When I got home I looked them up.  I was devastated.  I know they aren't life threatening unless they go untreated, its a scary thing to think about. I also know there is a chance that he doesn't have any genetic disorders, but I also want to prepare myself in case he does.
I've cried a lot today. More than I probably should. And I've stressed a lot. Again, more than I probably should. It scares me that he will have something wrong with him, and I won't know how to deal with it.  I love my son more than anything in the world.  I just wanted a normal kid. A normal son.  I don't want him to have a hard time with life because of his delays and whatnot.  I want him to be able to play sports if he wants, be validictorian and go to college, be a doctor, or lawyer, or whatever else he wants to be.
Maybe I am jumping the gun. He could be completely fine.  We won't know for awhile.  I'm scared beyond belief.  I will love him and care for him no matter what.  James has an eye doctor appointment in SLC in December. I am hoping we find out what's going on with his vision.
I know it will be ok. It's just getting there that's the hard and stressful part.