Monday, April 30, 2012

The Battle

I remember right after Grace had the stroke, one of her doctor's looked at me and said "Man up. This is only the beginning of the battle." At the time, his words were meant to be a comfort to a mom who was scared out of her mind. He was saying "there's a fight ahead...but she's a fighter."

Here we are, 2.5 years down the road, and oh Anthony, how right you were. The battle had just begun. The one thing he didn't tell me is that much of the battle would live within me.

What is that battle you ask? It's fear. It's doubt. It's endless possibilities and having no clue half the time whether even half of what we do for is right or not.

It's those long nights when my alarm is set for every 15 minutes, because for one reason or another I am convinced she is going to have a seizure that night. It's the jump off the couch to run and check her if she even moves in her sleep. It's dropping exhausted back onto the couch and then feeling guilt because I didn't check Josiah. So, up I go again, check him, the drop. Sometimes, I convince myself that I hadn't checked Grace in the first place and get up again to check her. Usually, after this, I fall back to sleep. Some nights, I allow my mind to wander and really wonder if I have developed OCD. (There isn't really a problem unless YOU don't recognize the problem, right? RIGHT?)

It's notes home from school saying that Grace kicked the teacher. Could the new medication be having an adverse affect on her? GRACE KICKED THE TEACHER??? It's the immediate reaction of "No, she would NOT do that." It's wondering whether I've changed my sweet girls personality by allowing them to start this new medication...even though we are only trying to help her.

It's the reality that every little illness she gets hits her like a Mack truck.
It's the room full of kids dancing around, that she wants to join. It's the INTENSE desire to grab her and hold her back and tell her she'll get hurt.
It's that feeling in the pit of my stomach when I hear her friend has a normal childhood illness. One she has been vaccinated against!
It's learning how to check the shunt for fill and refill because otherwise we would be at the hospital every 5 minutes.
It's the fact that she is scared out of her mind of hospitals and doctors and that is MY FAULT.
It's springtime fun, which brings with it parks with huge slides, swingsets, and pools.
It's sweet little 7 year old autistic girls, one minute enjoying her day, the next wandering off to the lake.

It's a battle. Every day. Often times, I lose the battle. I let myself get scared.
"But you know that the time to win the battle is long before it comes
   In times of sweet communion is how the victories are won
   Studyin' the Book of Life to learn the Master's plan
   So when the arrows fly on every side
   You'll have the strength you need to stand"

But sometimes...I win. 

 Or, maybe, she does.
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