"I should not talk so much about myself if there were any body else whom I knew as well."
-Henry David Thoreau

Wednesday, August 14, 2013

Decline

I rescheduled Alex’s speech therapy for yesterday so that we could go to Bentonville and meet Drew, Stacey & his boys for lunch.  Stacey leaves this weekend for Camp Shelby for a while and then on to Afghanistan very soon.  For some reason I’m taking this really personally.  Well, I guess the reason isn’t cryptic… our family has been in that position and it sucked.  Stacey and Drew are very close and I just hate the whole situation. 

As I was putting Alex in the truck to leave, I took note of how difficult it was but also that she was smiling.  I actually thought to myself, “I need to get over the fact that this is difficult for me, since she seems to be so happy.” 

The 45 minute drive to Bentonville was more than enough.  Several times during the drive I turned to check on her and assure her that we were getting closer.  She’s a good sport, but her body was a little pretzel and she was working so hard to tolerate the drive. 

Then we arrived at the restaurant and I went to put her in her stroller and… I couldn’t.  I literally could not get Alex into her stroller.  The same stroller, in the same position that she spent 4 hours in on Saturday.  How could she not fit just two days later?  The top half of her body was facing forward, but her hips and legs were twisted backwards.  She was as stiff as a board, twisted in strange ways and I physically couldn’t bend her to get her into the stroller.  I got terribly frustrated.  She giggled.  I got mad that she giggled.  I know that sounds awful, but this happens sometimes… I’m giving everything I have and she laughs.  It hurts my feelings.  I don’t know if she is giggling with humor or as a coping mechanism, but it really really hurts my feelings that I’m trying my hardest to care for her and she thinks it’s funny.  Anyway, somehow I got her situated enough to strap her into the stroller and had to lay the back down completely flat in order to straighten her body out. 

She laid back in her stroller while we visited and ate.  I held her hand so she wouldn’t feel left out (you can’t really see what’s going on when you are laying down).  I never really relaxed, but I did lean down and apologize to her for getting so frustrated.  She hugged my neck like it was not big deal.  Once we made it back home I felt quite sure that there was no way we could do that again.  If this is the new normal then there will not be any traveling or going out. 

From 2:30 to 5pm I sat on the couch and held her.  I think I shared how much I had to hold her on Monday, also.  Right now I am writing all of this as she flops around in the floor.  I’ve put her back on her blanket in the floor 3 times in the last 20 minutes and she is already off of it again.  This isn’t intentional, it is just the writhing of her body.  She is looking at me now, I think hoping I will hold her, which I will in just a bit.  When I hold her it takes a while to calm her body.  I hold her very snug, a bit like swaddling a baby and eventually her muscles give a little and we can sit comfortably together. 

I absolutely can call the neurologist about more medications and I will, but before we bump up more medications I want to be sure that I’m providing the proper atmosphere for her.  Obviously, going to Bentonville yesterday was a bad call.  I’m just trying to slow things down, provide her all the snuggles she needs and then I will call the doctor if need be. 

Okay, I need to hold Alex.  I just wanted to take a moment to document everything that is going on.  Oh, and I needed to sit on the couch by myself for just a moment. 

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