Friday, March 26, 2010

Life Outside The Bubble

Anna's appointment with the pediatrician went well this am. Her pneumonia has resolved and she is back to her usual self. He said there is a chance it was not aspiration pneumonia and that it was just a community acquired pneumonia that just coincidentally happened right when she vomited in her sleep. The other doctor thought it was aspiration. There will not ever really be a way to know for sure and in the grand scheme of things it really doesn't matter. Anna is still having episodes of vomiting despite all we have tried to do to stop it. He thinks that she needs the fundoplication no matter what kind of pneumonia it was. I am feeling a little more at peace about it today but will continue to pray that I will know what the right thing to do is. Our next appointment is with the surgeon on Tuesday. I am going with an open mind and a list of questions. I am not usually the type to take a list in with me but this time I will do it anyway.

As I had said before, our trip to Georgia was amazing. I really treasure the time I got to spend with my sister and her kids. On the other hand the trip opened my eyes to a lot of things that I had not really had to deal with before. Where we live and where we go to church and where my friends are and where I work are all my comfort zone, my "bubble." It is not often that I go outside that bubble. So people know me and people know us and there is little explaining about Anna. She is just pretty much accepted for who and what she is even if it is different. But in a new place the bubble was gone. I was faced with deciding when I needed to explain what was wrong and when to just keep my mouth shut. Anna is not disabled enough to fit in with the disabled crowd but also not normal enough to fit in with the normal crowd. If she was in a wheelchair or had the typical features of say a child with Down's Syndrome then there would be little doubt about the fact that she was disabled. People would still stare but they would mostly have their answer (I think.) If she were "normal" then there would be no need to explain anything. But Anna is neither of those things. So I feel the need to explain to people all of the time why she walks a little funny or talks a little funny or if there is a chance her shirt might come up I feel I need to explain the button. For example, we went to church with my sister. They asked how old Anna was and I said 2 but then had to explain why she needed to be with the 1 year olds and what her button was and why she talks a bit different... It is just hard to know what to say, how much to say, and who to say it to. At home things seem pretty normal but stepping outside the bubble I had to realize that things really are different for us. That was a tough pill to swallow. The realization was more painful than I had expected. I suddenly also found myself feeling more critical of myself and the decisions I make for Anna. I find that when I am having a difficult time I become more defensive and feel like people are second guessing what I say or the decisions that I make. The truth though is that I am second guessing myself because I am in unfamiliar territory and I am scared and I cannot put that on anyone else, that is all me.
So I guess I am still on an emotional roller coaster at times but God has given me a seat belt and assurance that he has the ride under control. In Him I will trust...

1 comment:

  1. Lately I've had this nutty thought in my head inspired by Barabara from Therextras. She said something in a post about how parents of children with Down Syndrome have worked to make them a part of regular society. I really believe that that is what CP parents are doing now. Our kids are out in the community, interacting with others in way that just weren't possible twenty years ago. It's difficult at times, but I really believe that we are putting a face to cerebral palsy and hopefully one day people will recognize it when they see it and it will just be what it is.

    Ok, enough ranting.