Saturday, January 11, 2014

Don't get too comfortable here.........

I was just about to unpack my bags and relax in the land of "WOW! Things are going Great Here."

And then this week happened.

Our lives did an abrupt U-Turn back to the land of "Screaming and Fevers and Full Body Rashes and Irritated Tube Sites and Tantrums and Complete Shut Downs."

And I'm reminded once again that chronic literally means chronic.

And I'm reminded once again that Autism literally means different.
Not bad. But definitely different.

And I watched Owen scream and scream yesterday because his friend who is younger than him knows how to tie her shoes and we're not even close. We're not even on the same planet. We're not even putting on our own shoes yet because the socks get bunched and then all holy hell breaks loose.

And I got slapped this week with a big dose of reality. Of difference. Of struggle. And even though I really try not to do this, I let an occasional "why him?" root itself in my brain. And once why him roots itself, his brother, why us, starts sprouting and nagging as well. And that just doesn't lead anywhere good. Trust me. So I usually call in the big guns and tell my brain to stop being a selfish douchebag because why not us? Ya know?

But enough about my messed up brain.......If we start unpacking my crazy, we'll be here all night......

 This week was hard because Owen's starting to realize.

He knew yesterday. He was focused on the fact that he was older than his friend and he can't do the things she does. He realized. And it made him angry. Just pure angry. And his anger lashed out at me. And I can take it; I'm a big girl. But I don't like watching him take it. And I didn't like watching her take it.

And this friend was just as sweet as she could be. Bless her! She sat with him and tried and tried to help him tie his shoes even though he was screaming at both of us. That's Jesus right there in her heart. Most 4 year old's would throw the shoe at his face because of the way he was acting. (Actually, I'm 36 and I kind of wanted to throw the shoe at his face.......) but not Leah Kate. She just sat there and never once raised her voice and tried over and over to show him how. 

And once we finally convinced him that it was okay if Mommy tied his shoes, they were outside running around and all was well for them.

But my heart was still aching........

Because its another hurdle for us to jump. Realization is dawning in his brain and how do you explain autism and illness to your child who can't process correctly because of autism and illness?! I have no answers for that one yet. Zilch. Zero. None. Nada. Niet. 

He knows he "should" want a birthday party, but he has made it abundantly clear that he doesn't want one. He knows he should be able to wear jeans without them bothering him and he even tries now, but they don't last long. He gets frustrated because he can't remember his letters. He's starting to realize his, for lack of a better word, setbacks. We know the huge blessings Owen has to offer so I guess we now learn the balancing act of helping him continue to work really hard to try to catch up to his peers while letting him know that he's also really great - just the way God created him. 
I guess that's really what we all do, right?
Try to achieve without comparison? Try to believe that we're enough just as we are.
Just as God created us?

That's a tall order for us.
It's a venti order for an almost five year old.

But today was a little bit better.

We're standing back up, dusting off our knees, and praying for a healthier and better week.

And maybe buying some shoes with velcro.... ;)

1 comment:

  1. My....heart....aches......but I think that is part of the chronic too. As his needs and struggles become larger at times the aches of our hearts do too. As he shines and is filled with joy, we set aside all aches and ride that wave with him. But my....heart.....aches.....for YOU too. God is doing powerful things in you, through you, and because of you. His parents, his siblings, and truly dear friends like Leah Kate are the hands and feet of God in many situations. My prayers are for more days NOT like this week's days!