The goal of this blog is to 1) share my children's development with family who live far away and 2) share what we have learned about their medical challenges in the hopes that it helps others.
But now I want to talk about me.
Asher's EE really scares me. I read what the experts write about it. I talk to other mothers of children with EE. I talk to Asher's doctors. The future for Asher scares me. I worry about his ability to eat food by mouth. I worry about the need for a g-tube or ng-tube. I worry about how it will affect his development - both mental and physical. I worry about his longevity - that his EE may shorten his life.
OK, I'm terrified about that last item. Will I lose my baby due to some disease that I don't understand? We always say that Asher is "freakishly strong and frighteningly smart". He is wise well beyond his two years. Is he a prophetic angel brought to us from some external being? Is there a special goal for him? Mainly, will his life be taken from us way before we're ready? That last fear sends me into a wild spin. It makes me want to hold him tight and not let him go. I want to try to protect him...except I can't. I fear this is beyond me. And that terrifies me.
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