The DNA test was our last chance for a different answer. It wasn't different. I really tried very hard to force myself to be upbeat the last couple of days but I can't. I cant explain why this hurts so much more but somehow it does like a final nail in the coffin. It bothers me so much that is in his Dna. I mean obviously it would be but I helped make that DNA. I carried that little boy inside of me, this happened inside of me. The guilt I feel I cant make it go away.

I feel guilty that I am okay that I got to grow to adulthood and have children and he wont. As it stands right now this disease will kill him. There isn't a thing I can do about it. It wont be a random accident but a slow agonizing wasting away. How in the world do I live with that?

I don't understand this and I know that any illness would come w/o understanding but I took him to a speech therapist for a speech delay I never imagined he was sick. i don't want to do this. How will I ever explain this to him.

I knew the DNA test was just a confirmation but I wanted it to be different, I want all this to be different. I don't know how to adjust to this, I wish there was a guidebook. Like coping w/ your child terminal illness for dummies or something.

I am going to go check on him now sleeping and peaceful and I am going to kiss him and try to remember above everything else how lucky I am that he calls me Mommy.