SMA awareness day 6-Disappointment

 Of course life has disappointments no matter your circumstances. But SMA life has its share of extras, at times. This is one of those times for me. 

A friend of ours asked us to go to a concert on the green this evening. I was excited!  I was excited to see her and her husband and to get out in the beautiful weather (we haven’t had a lot of pleasant weather this summer). I didn’t even know the performer, it was just getting out and about with the family and friends that was exciting. 

Well, I thought it was a go. But Gene wasn’t so sure. There are lots of factors and many have to do with SMA and the ramifications. 

*Casey’s behavior is always a factor (he tends to be very loud and nothing can get him to stop)

*we have to be aware that sometimes when he’s in his chair that he can’t release his pee and that can be very painful and not good for him. 

*we always have to monitor his secretions and his medical equipment (we’re used to this, of course, but it puts us in overdrive when we’re out and about)

*Casey’s power chair attendant control is on the fritz. We can go a couple of feet and then the chair abruptly stops so we have to turn it off and on again. 

*plus we have the darn dog. Molly has never been left alone at home so we’d have to take her. That’s added stress, too, because she’s not very used to being among a lot of people. 

I’m sure there’s more but that’s enough :(

So this is what we’re doing.

Watching the Love Boat and surfing the web. 

Molly Sue snoozing on the couch. 

Me on the couch blogging. 
Gene is puttering around.