The Devil Works in the Night

It always happens at night. Those feelings of inadequacy, jealousy for wanting something I know I can't have, feeling that the 2 most important people in my life deserve better.

I try during the day to accomplish goals to make myself feel better about day to day life. For instance, yesterday, I wanted to finish up Evie's room, do dishes, etc. So when something happens and get in the way of letting me accomplishing my goals for the day it really bothers me. Not only not accomplishing the simple things like laundry and changing the sheets, but also not accomplishing mental goals as well. For instance, trying to accept that other families will have normal lives, unlike me and Patrick and Evie. It is a daily battle. What is the "norm" for us, is completely different from other people's norms.

We went to Dallas a few weeks ago to meet with some pretty awesome people. We stopped about halfway there to reinsert Baby Girls NG tube, on the side of the road, on a picnic table. (Good thing its not a sterile process!!!) We drove up to the hotel, after having had a 3 hr trip turn into a 5 hr trip. Proceeded to get all of our things out of the car, looked around and realized that no one else had an IV pole attached to their stroller so that their kid could eat. Little things like that.

The rest of the trip went relatively smoothly. We met at a little shop in Denton, and had beautiful Fat Free Yogurt, although I added a smidgen of granola to mine. IT was wonderful. I guess the most important thing that I got out of this trip was a wonderful friendship with another family that, hey, is just like mine!

These people, have a wonderful, funny, bright 18 year old daughter who has LCAHD. IT is so nice to see that she is normal, and can hang out with her friends. I guess I had it in my mind, that Evie would have a very select group of friends that knew and understood about her disorder, and would accommodate for that, and that still may be true,but she can go to school, she doesn't have to let the entire world know that she is Fat intolerant, so to speak. Fat content is a very big topic in our household, and I do get concerned about what how future friends and their families will handle Evie. I heard of one family who had really good friends who had a shelf in their house dedicated to their child. Its just nice to know that even if this family is 3 (er....5?) hrs out of the way, they are nearby and we can get together regularly. We ARE all in this together.

Literally, it pains me sometimes to look at healthy babies that are Evie's age. For whatever reason, I have no problem with older children, just the younger ones that are healthy. I think all sorts of horrible thoughts and I can only beg God to forgive me. Its not, necessarily, that I want something to happen to those kids. Its just that I want Evie to be healthy and "normal". I want Evangeline. I just want her to have all the enzymes necessary to process fats so that she can lead a normal life. The Dr told me Monday to keep her away from other kids , so I guess that solves that problem. The germs are too sneaky and can find their way to make baby girl sick. On the one hand thats great because I don't have to put myself in a situation, where I get upset and come home and cry, and Evie doesn't get sick. On the other hand, I need adult interaction, especially now that we are back to staying up at night. Patrick will be leaving to go back to work next week and also begin taking more classes soon, and I know these feelings will all get worse.

IT always happens at night. I am laying in bed trying to go to sleep, and I can't for many reasons. Fear, worry, just can't relax, then all of the sudden these feelings of inadequacy and jealousy creep in, as if i am simply waiting for them.