Friday, September 30, 2011

The Week

I am a parent of a child with special needs. My life isn't glamorous and it is full of hard work everyday. I go weeks before I realize I need a break. But in the end, the gifts of joy I receive with just an inch of progress - are quite extraordinary and in these moments I know we can do anything.

Boy, ain't this the truth.  It's been a week of up and down.  We've been invited to a family event this weekend and it was pretty much said that Sal wasn't welcome.  I have to admit - it stings.  Since I've had time to deal with this - I'm a little less "hot" than I was when the info first came down the pipe. 

Bill says we're taking her any way.  The thing is - we have NO sitter for her.  Let me tell you the last time we had a weekend or even a night away from her:  When I went to the hospital and had Jack.  :-) 

The way *I* feel about it :  Sal is a very special spirit.  You are *privileged* to be part of her life.  Soooo - when you're a butt-munch you don't get the privilege of being in her life - period.  Not when it's convenient for you - not when there's no one around - never.  But I've been out-voted.  At least in this case.

I broke down the other night and really BAWLED.  I think it wasn't only this situation but just the climax of a really weird week.  Sal had several really good days at school and then of course brought the whole thing down with a really NASTY day.   Ugghh.  It's just tiring - the whole up and down - so low and then so high. 

Jack is going to a sib shop tomorrow.  It's where kids get together to talk and do stuff and the one thing they have in common:  they're all siblings of Special Needs kids. 

We also met Sal's teachers for next year.  They had Best Buddies fundraiser night at Culvers and we went - Sal will be getting a Best Buddy next year - and Jim (the owner of Culvers) introduced us to the teachers.  They had heard of Sal.  :-)  It's always amazing to me how total strangers are so much more involved in her life than family.  I think that's what kind of brought me "up". 

So, we'll see how things go.  I'm looking forward to Monday and the end of this weekend.  :-)

No comments: