Tuesday, September 1, 2015

Didn't mean to rain on your parade......

Haven't posted here in a while. Things are ok.  Sort of funky.  Feeling hot and slow.  Ed's good - he seems tired too.  He's weird tired, though.  Like he gets these bursts of energy for the things he wants to do but then is tired for anything else.  I suppose that's the disease...

Take going to the state fair.  I do NOT want to go.  I know I'm being selfish.  It's super hot and muggy so there's that.  But more than the weather is the hassle of the wheelchair and the on-going status of his hand.  I thought his hand was pretty much shot.  It is shot!!!  He can move a couple fingers and change the remote.  When he gets stressed, his whole arm will get frozen (you can touch his arm and it feels ice cold) and then his hand stops working.

Soooooooo - in my usual way - I'm thinking about everything that can go wrong.  Crowds, getting on the bus, sticky hot weather, feeding him, going in and out of buildings filled with people, and finally his hand decides to stop working and it's a long miserable trip home.

He is super jazzed to go the the fair.  How can I say no??  It's like this bucket list trip he had to go to Wyoming.  I have to drive he entire way.  It's this amazing drag to think about.  I feel the weight of how much I dislike it pressing on me.  Add the guilt that I'm raining in to his bucket.

He did modify Wyoming down to South Dakota.  The odd thing is, the whole planning falls down on me too.  It's Sept 1 and we haven't made any plans to go.  I suppose I should just sit down and get 'r done in terms of things to do, reservations, etc.   I get a little pissy because he's mentally capable.  He can say "grab the laptop, let's do this together."

Luther is like this little kid.  On the South Dakota trip, he wants to go four wheeling.  He's really excited about getting strapped in to an ATV that I'll be driving and head in to the woods at 50 miles an hour.   Ummmmmmmmm - no.  No no no.  Is that wrong?  I wouldn't mind if someone else drove him around.  Well - yes, I would mind.  He's like a ragdoll strapped in to this machine that could fling him in to the air at any time.  Even if no flinging is involved, the physical toll it would take on his body will be outrageous.

So here we go again.  Sorry, honey - you just can't have any fun.

I know there's a middle ground.  We can find some other way to get that outdoor, ATV excitement. But I feel like I'm always raining on his parade.

I'm not sure how I got off on this tangent.  Just wanted to check in, say it's been a fairly quiet week and sign off.

Hmmmmmm.  Clearly there are a few things on my mind.

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