Memorial Day weekend it is.  We should be at the beach, but the beach is no place for a kid who can't blink and has a trach.  And so today I made Sam watch a Rocky marathon with me, Rocky I, II, and III.  I love the Rocky movies.  I think I might legally change his name on Tuesday when the courthouse opens.  No, Tuesday is reiki day.  It'll have to wait.  Anyway, I thought it would be good inspiration for him.  (I had fun pretending to punch stuff all day.)

 

He's been squirming so much lately we're going to have to do something about his bed.  He sleeps next to me, but he's on a crib mattress which is elevated at one end by a pillow.  That's mostly because I'm overly cautious and he used to have reflux.  Well, with all the wiggling he's about to wiggle himself right off, so we're going to have to get him a bigger mattress or something.  I don't know, but that's a happy problem, anyway. 

 

And this morning he was just nasty and grouchy when he woke up.  I couldn't figure out what his problem was, but he calmed down when I fed him, so I guess that's what it was.  That's pretty cool, because normally he doesn't let me know that he's hungry.  So I suppose that's what was happening.  And since he won't smile at me, I'll have to settle for being yelled at for a valid reason. 

I should definitely write on Tuesdays.  Those trips out to Zephyrhills are keeping me going, that's for sure.  We're seeing much more response from Sam since we've been there, and everyone just loves him completely.  It's something to be in a room full of people who talk about him and to him that way.  It's mostly women, but there are a few men there, too, and the love and energy is just something to behold.  They just believe in him so much and care about him.  He's a rock star there, and he knows it. 

 

And Dr Towle wants to help him so much, and already is.  His legs are looser already, and he's moving around so much more.  Brain injuries are nasty nasty things, and one of the most horrible (I think) aspects is the "freezing up" of the joints and muscles.  Like being locked in your body.  Sam's legs are just loosening up so much more all the time.  His arms are coming along more slowly, but I'm sure they'll get there.  He's only seen him 3 times, after all!

 

And then there's the crazy talk that sounds not so crazy anymore.  Dr Towle made reference to the idea of my being able to get more of a life again as Sam gets better.   !!! Huh? Wha? A life? For me?  I was completely taken aback.  Sam's pretty much attached to me around the clock; he even sleeps next to me because he can't even roll himself over or clear his throat.  (The idea of any sort of a normal life again crosses my mind occasionally, but I think I was starting to give up on it, like I gave up on being a ballerina/astronaut or running off with Bruce Springsteen.)  People have talked about my getting a life back again, but it's been in reference to accepting that there's no hope for Sam and moving on, which of course I won't do.  I sure don't hear doctors talk about Sam getting better; I can't even tell you what it does for me.  

 

Without these Tuesdays full of angels to pull me through the week, well, I don't want to think about it.