To Infinity and Beyond!

Beyond infinity, I think that’s roughly where I’ve been recently.  Or maybe I’m just in a major Disney mood…either way, I’m back!  I think.

It’s been a rough couple of months around here.  Transitioning through the end of the school year for G (harder on A than on anyone else) and handling therapy scheduling changes for A at the same time has really taken its toll on me.  As a result many things have suffered including my writing, eating, breathing, ability to carry a coherent thought, and sleeping.

Yes, the rumors are true.  It is possible to sit down and immediately fall asleep without realizing it until many hours later when you wake up in a very uncomfortable position that should not be humanly possible on the couch.  This particularly annoying development has led me to conclude that no matter how much I may want to write, the rest of me has other plans that center on a close, detailed observation of the inside of my eyelids.  And I was tired of waking up to random letters strung together on the screen that clearly indicated my pathetic and entirely useless attempts to write while no where near coherent.

Still with me?  Good.  I’m lost already.  Where were we?

Oh right,  the last 2 months.  Let’s see…where to start…

Well, A has made some minor progress with eating.   She has recently updated her menu to include cinnamon & brown sugar Pop Tarts (and yes, they have to be the brand name ones) along with banana bread (no toppings and at room temperature only thank you very much).  Little bits, but it does allow me to get a little more creative with her meals.  She tolerates both preferred and non-preferred foods on her hands (sometimes) now, which is a big step forward.

"Look Mom! No spoon!"

“Look Mom! No spoon!”

"Yum!"

“Yum!”

I still don’t think we could live without yogurt.  That and PediaSure are still my life savers when A is having a really bad day.

Her “bad days” are fewer now than what she used to have, but when she has one it tends last for a few days.  Not fun for any of us.  Recently she had a bad week that I think was harder on me than on her.

About a month ago A had a week where her body sense was so off that she could barely negotiate a playground we had been going to almost every day.  Normally she would take off and run and climb without too much trouble.  This particular week, she was crawling just to make it up 3 (yes three) small steps to get onto the equipment.  It was so hard to watch her struggle.  Most mornings we had the place to ourselves, but one morning there was another little girl A’s age at the playground.  A was eager to play with her (yay for improved socialization!) but was still unable to negotiate the equipment without crawling.  I stood back and watched to see if A would follow the other girl up or just stay on the ground where she felt more secure.

A started to crawl up the steps while the other little girl bounded up them without holding on to a thing.

This is hard to write about.  It’s been a little over a month but I still have trouble writing or talking about this because in a way it still hurts.  More so than I’d like to admit.

Seeing the other girl make it up the steps and across the platform with no hesitation, A realized she was different.  That one moment on that one day, she became aware she wasn’t like every other kid on the playground.  I could see it in her face, in her eyes and it hurt.  I wanted so badly to scoop her up and take her home.  To protect her in a way.  It took everything I had to stay standing off  to the side and let A decide what to do.  A decided not to be left behind.  She grabbed on to the railing and pulled herself upright and fought for every step to make it up the stairs and across the little platform to where the girl was standing and waiting for her.  A held onto the railing like it was the only thing keeping her upright (and I think it was) and pulled herself along one slow, careful step at a time.

It was so hard to watch but also so wonderful at the same time.  My little girl didn’t give up.  She fought to keep up and not be left out and she did it.  She was exhausted when we left the playground 20 very long minutes later but she did it.

As hard as it was to watch her struggle and as much as it hurt watching her realize she was different, I am so proud of her and I know that she’ll be okay in the future.  I don’t know how this new awareness has affected her since she doesn’t have the words yet to tell me, but it doesn’t seem to have dampened her spirits at all.

We can only go forward from here and as we do I pray that A can continue to face whatever comes her way with the same courage and determination she showed on the playground that morning.

In the meantime, I’m off to a more comfortable place to sleep before I fall asleep at the computer!

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