Wednesday, August 25, 2010

So much to say and so much going on

I have this strong drive and passion to get Luke's story all written down and I have wanted to for awhile.  There is so much that I get stuck on where to start.  But I have by making this blog and I keep telling myself even if it takes months at least I am working on it.  There is a lot of stuff to say about Luke.  And as I am writing and thinking I have come to realized how things with Luke are relatively slow right now.  I am looking back at one thing after another going one with Luke.  If it wasn't breathing, it was his g-tube and then feeding issues, and then Luke just being a baby.   I get exhausted just thinking about all of it sometimes.  But I will get it down and it feels good to have every new portion down.  It may be a little disjointed at first but it will get better hopefully. 

And as I write I have found that the story doesn't speak loudly to Moebius Syndrome directly but all the issues Luke is dealing with are things that many Moebius Syndrome parents face.  Moebius Syndrome is a clinical diagnosis and there is no cure, you just treat and help the symptoms as they come with therapy, ventilators, trachs, g-tubes, ect...

Which makes me think of something.  One thing I have had trouble with since Luke has so many "issues" is not overreacting to normal baby behavior and issues.  As my mom says "Luke is under a microscope" and under that microscope his normal baby issues tend to be blow out of proportion many times.  So I would caution those with children with a lot of medical needs to ask around to other parents and your own parents and see if some of the things going on are just baby things and not related to the medical things going on.

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