Sunday, May 11, 2014

Twisting Myself Inside Out in Real Time




 Today I had to twist myself inside-out to make it through.  That was one of my Paternal Grandmother’s favorite expressions.  She used it to describe the feeling you get when you have to do something that you really don’t want to do and sadly, that’s how I felt about getting out of bed today.  

 
I was tired before I even got up and my first cohesive thought was of my own Mother. It was a very long week, the one that just passed.  Work completely wiped me out, two of my closest friends are suffering and other than support, I can’t help them.  I recently lost something incredibly valuable to me and I’m still holding onto the hope of find it again because it’s absolutely irreplaceable. As if that wasn’t enough I’m allergic to the perfume set I bought myself as a present for another year of keeping my kid alive.  Grumble-grumble-grumble.

I know, I know….it’s Mother’s Day.  Rah-rah-rah!!  

No.  

No one woman cheerleading squad today, just a solitary, tired parent.  I actually kind of feel like a Dementor may have eaten my Pom-poms.  This morning I didn’t know if I’d have the strength to go on.  

Pffttt… Of course I did.  And did you notice something?

Not one, item in my litany of complaints, has anything even remotely to do with having a blind child.  Little Dude was the blossoming rose in the thorn bed of my day.   Life goes on, even after you have a disabled kid.  And sometimes it kind of sucks anyway, for completely unrelated reasons.  I'm writing this depressing post today, because I can't always be as upbeat as I usually am.  No one could be. I aim to encourage and support but never mislead.


I give myself days like today, days that I let myself feel what I'm feeling.  I admit that it's not a Supermom kind of a day and embrace it. This just happens to be one of them.  But here's the thing... part of what I'm feeling, no matter what lies at the heart of the matter is that my baby is blind and I can never fix it.  It's a monster of a feeling and it rears it's ugly head when I don't have enough optimism to wack-a-mole it away.   That monster is a jerk.  I call him Harold.

One day.  Just one day.

Tomorrow I have to wake up happy and strong again, because Harold feeds on fear and weakness, if I allow him to he would grow strong on my negative emotions and take over.  Not on my watch.  Tomorrow I'll wake up ready to chase the monster away, but I suspect I'll never be able to completely banish him.  He'll be waiting for bad days, for heartbreak, for sadness...any excuse to launch an attack.  I will fight this fight untill the end of my days.  It is my cross to bear.  I can do something though, I can keep my battle with him private. My son has no part in this inner war.

Or maybe, unwittingly, he does.  This morning Gabriel was my Cheerleader.  Funny how that works sometimes.


He wished me a Happy Mother’s Day (137 times), gave me snuggles, love and a beautiful, glittery handprint flower pot that he made in school but had no part in actually making other than donating the shape of his hand.  I'm always surprised by how fast he can twist me right-side-in again.

I had a surprise for him, too: his very first movie in the theater.  

I love the movies and remember my first like I went to see it last night.  It was 'Annie', and I was absolutely enthralled.  I WAS Annie, during those 127 minutes.  I clearly remember my spunky redheaded self scurrying up that ladder at the end to escape the evil Hannigans.  I was a total badass.   

I’ve seen 'Annie' dozens of times, but it was never that same as that first night.  There is something about being in a darkened theater with your imagination running wild, isn’t there?

I wanted Little Dude’s first movie to the same wonderful experience…but no movie ever seemed to fit the bill, so we settled.

We went to see Disney’s ‘Bears’ with our friends and it went a little better than I expected. My biggest concern was that it would be too loud for his Spidey ears, and it was but not painfully so.  I thought that a Documentary style movie would be a good choice, but the narration heavily depended on being able to see the bear’s antics, so as soon as the food was done, so was he - but he made it till about the halfway mark.  (I cleverly bought us the Mega sized popcorn.)

I found myself having to explain a lot to him and he started getting fidgety.  The narrator said something like, “And now the Bears will look for hidden treasure” and Gabriel said, “Are there going to be Pirates now??” I said no and he was crushed.  A few moments later he asked me if the movie was over and I said no but it could be for us if he was ready.  He was.  So were the people around us who’d been listing to my backseat storytelling.

We left the movie and I asked him what he thought.

Me:  So, Little Dude.  Your first movie.  What did you think?
Gabriel:  I love movie popcorn.
Me:  Yeah, me too.  But what about the movie?
Gabriel:  Well…..
Me: Was it too loud?
Gabriel:  It was loud but I didn’t have to put my head down and cover my ears. *
Me: So why did you want to leave?
Gabriel:  Well, Mom…I hate to break it to you, but I just don’t like bears that much.

He’s right.  ‘Bears’ was no ‘Annie’.   I dropped the ball on that one.  Epic Fail.  And on Mother’s Day, no less.  

Well, you guys know me by now.  I already have a plan of attack for the next time.  I’m going to get a copy of the movie that we’re going to go see (through perfectly legal means, I assure you) and watch it with him at home first.  That way I can answer all his questions and pause it to describe things without pissing off a theater full of strangers.  By the time we go see the movie he’ll understand what’s going on and hopefully not be just sitting there, bored and confused in the dark.  Like he was today.

Or maybe movies just aren’t going to be our thing.  Maybe we’ll be going to Death Metal concerts instead.    Maybe my blind guy will never care for film but there is a blind guy who reviews movies, did you know?

That’s a link to Tommy Edison’s Youtube page.  Aside from reviewing he also posts truly hilarious videos about life as a blind guy.  He might even be funnier than me.  Since I’m feeling more twisted than funny today I’m going to go catch up with him right now, and since you just sat through this relative bummer of a blog post, I suggest you do the same.


* I don’t know if it’s just my kid, but when Gabriel get’s scared he covers his ears the way sighted kids cover their ears.  Makes sense to me.

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