Our World According to a couple 5 year olds

I think Allan and I are running out of steam. We need to get the results of the muscle biopsy, but it is still not in the correct location. The lab at Baylor will not use the mislabelled sample, even though they can verify that it is Ava's at DuPont. (Red tape, licensing etc). This test apparently has information we need to know. The quote is three weeks from the time sample is received. I have not been overtly angry about this until about now. I am sick of the whole entire thing.

We came home tonight beaten down and weary. Waiting is hard. It's hard on us, it's hard on Ava, it's hard on the girls, it's hard on the grandparents who rotate caring for our girls. I told my sister tonight that I am tired of my life being on-hold and that I just want to get back to the regularly scheduled programing. To do that, I may not be able to at least see and kiss my daughter every day. So in a way I am content to wait too. We know that this is what God is asking of us, so we will obey.

Tonight the bigger bugs were very affectionate. We did our Christmas count-down (a gratis a friend/pre-school Mommy). The story was about how Sarah wanted to have a baby and waited her whole life for one. She prayed faithfully for her dream. When she gave up on the notion of having her own child, God blessed her with baby Issac. She was stunned. She was really really old. We then talked to the girls about how God answers our prayers. Emily mentioned that God answers our prayer about healing Ava. We talked about healing for only a minute (you know there were pictures to color). I asked Alexa how God heals. She said, "Heaven".

God can heal us imperfectly in that we are still "broken" and we continue to live this life on earth. He can also heal perfectly in that we are totally healed and restored as we are ushered into His presence. This is accomplished through our death and our belief that Jesus died for our sins and was resurrected. Healing in this way is the ultimate goal. In heaven there is no brokenness. Alexa knows about this because she knows that her brother was completely healed.

I took some time to individually tell the girls how special to me they are. To tell them that I miss them like crazy when we are not together. To see if they understand and accept that we need to do this for Ava right now. They are so gracious and understanding. They also want us to come home. They keep asking us when we can come back. They ask if Ava can come home. I told them that I didn't know. Alexa then told Emily that Ava may have to go to heaven. They so miss their sister.

Emily then told me that if the doctors say it's OK for us to come home then they will stay and take care of Ava for us. Did I know that some doctors stay up ALL night and sleep in the day so that they can take care of Ava? They are kind of like bats. You know, they sleep all day and just fly around at night.