Thursday, November 17, 2011

Has it Really Been Two Months

Apparently it has :)  I have negleted my blog and for that dear readers I do aplogise.  I have read other peoples blogs latley and wistfully thought "man I wish I had time to post"  For those of you who are interested I will try and catch you up. 

Sam has something called Charge Syndrome, look it up if you like I'll wait...Its a recoginsed pattern of birth defects and its pretty rare.  We have spent the last 2 months hanging out in various sections of Mott's Hospital trying to find out which birth defects our Sammy does or does not have.  The great news is he doesn't seem to have the really scary/ life threatening aspects of Charge.  The bad news is he is deaf/blind.  No, he is not deaf and he is not blind but he has vision impairment and hearing impairment.  Also very rare, actually only about 60 kids in Michigan with combined sensory loss like that. 


The good news is, there is a lot of support out there for people with kids that have specific issues.  I hate the word special needs.  All kids are special and have needs.  We go to a play group once a week and meet with other mom's with special needs kids.  You know what I learned?  Mom's with special needs kids are just like me and you and well every one else.  They often have "normal" kids at home.  They like going to Mott's Hospital about as much as the OBGYN and they are pretty honest when asked how things are going.  One of the first times I went to Mott's with Sam I met a mom who had a son with Cerebral Palsy and I thought man she is tough, I wonder if she wears a cape.   Now that we know we also have some extra hurdles to over come I keep waiting for my cape to show up in the mail.  It hasn't yet.

Some of the other blogs I read are all about so and so and their life with such and such illness/disease and or condition.  Not going to happen here.  My plan and hope for both my boys is for them to do their best what ever their best might be.  Having or not having Charge isn't all I want our lives to be about so it's not going to be what the blog is about. 

Max is doing pretty well, his speech is improving but still not where I wish it was.  Its beyond frustrating not being able to communicate with your son.  He loved being Mickey Mouse for Halloween and he loved trick or treating.  He is the best older brother we could have asked for and sometimes when we go to a doctors appt and learn something else Sam is going to have to deal with and I'm a little down, Max runs up to Sam kisses him and says "Sam's Home!"  And I am reminded, to Max he is his little brother and he is perfect.  

That is about all we have been up to in the last couple months.  I'll try and post more often I promise. 

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