Well this is the part that I have not told too many people. If I say it, then it's true, and I don't want it to be true. It makes me terrified to think about it. But the truth is is that we will be giving her back to the Lord way sooner then we would like to, probably in early childhood. Very few children with pontocerebellar hypoplasia (or kids that are highly effected by a mitochondrial disease) make it to their teens and if they do make it, then their 20's is extremely unlikely. I am hoping and praying like crazy that because she is so "rare and unique" that she beats all these odds and shows the medical world something new. But since we have no way of knowing what our future may hold, right now I just thank God for this precious gift that he is letting me borrow. That he is entrusting me to take care of and love. So that is exactly what I am doing. I am loving her and everyday that I have with her and not taking a single day for granted.