This sums it up.

So, I've been trying not to post a downer blog for awhile, but here it is. (A big TY to my friend Tracy for chatting with me last night and trying to help find ways get make things better... i really appreciate it.)

Another mom blogger said it way better than i can, so here's an excerpt.  Her daughter has different challenges than Micah, but you get the idea.  

So, I put Harlie in the car and we go to her Daisy meeting.  I get her out of the car and one of the moms happens to be in the parking lot getting something from her car.  She comes over and says hello and asks me how I'm doing.  And I started to cry.  Ugh.  I didn't want to.  But, I was just so overcome with sadness for Harlie.  For how much she has to deal with.  For how much we have to deal with. For how incredibly hard it is to do normal things.  I can't tell you the effort that goes behind everything we do!  And the drooling.  It just makes everything THAT much more difficult.

It's the proverbial straw.  We've handled and dealt with so much, but it's the drooling that's going to push us over the edge.  But, what are we going to do?  Stop dealing with it?  Well, that's not an option.  Tonight one of the girls sat next to Harlie and squealed, "Ewww!" when she drooled.  I know.  I get it, sweetheart.  It's gross.  And I don't blame you for thinking that.  But she can't help it.  And it breaks my heart.  Then they started to play duck, duck, goose.  Not exactly the best game for a kid who can't talk or run.  But, she didn't care.  And she did it.  She didn't sit in the right place when her turn was over.  And one of the girls said, "That's okay, Harlie, you can sit wherever you want to."  And I wanted to cry all over again.

The reality of knowing that there will be no true break (from heart break or the physical demands) in the future is exhausting in itself.  No weekend away would ever be able to touch the heaviness of all that's involved with a child like Harlie.  We've left the medically fragile intensity of years past and entered the emotionally difficult phase.  With medical oddities and challenges thrown in.  And when I find myself asking God to make things easier for us, I take it back.  Because I know it won't ever be easier.  As long as she's here, she's going to have challenges to deal with to try to overcome, or accept.  So I tell God, never mind.  Just give us the strength, okay?

http://lifesinceharlie.blogspot.com/2012/09/some-days-are-just-hard.html

Yep, that pretty well sums it up.