hall of mirrors...

I remember the one and only time I went into the "Hall of Mirrors" at the County Fair was when I was in high school. Everywhere I looked, I was distorted. Tall and skinny, short and round, wavy and crooked, split in two. I remember being frightened by it. Then I freaked because I couldn't figure out where the exit was. It was dark and spooky and nothing was "normal".

Today I feel like I did then. Nothing looks quite right and I want out.

It's 1:06 a.m. and all is quiet in the house. My guys are both softly snoring and Miss Courtney is sleeping holding her favorite stuffed puppy. As for me...I am right back in that Hall of Mirrors searching...

This past week has been filled with many of late nights and lots of worry about the things I cannot change. Everywhere I look I see something different. I see a new wrinkle in the plan. A complication I hadn't thought of or a situation I didn't anticipate and it is very frustrating I must say.

Miss Courtney is doing well. Her blood gases have stabilized and returned to a "normal" range for the time being. The damage to the organs is still there waiting to cause more trouble as we go along. But for now, she is OK. We have tweaked her diet and changed a few meds to help her. You would think that would bring me some relief.

Not tonight...all I can think about is how bad it will get before it's all over. Not a subject matter conducive to sleep I must say. I have quite the imagination ya know.

How long will it take? This ending the Doctor's keep telling us about. That's a question for the ages. This child has lived 17 years longer than any doctor predicted. Now they are saying she has two to five years.

I want to scream at them "You have met my daughter right? She has yet to pay attention to any physician's prediction about anything...ever..." Ha!! Knowing my Courtney she'll double that and then some.

But it won't come without a price. It never does. Time is a very precious thing especially when you know that at any time she could have a seizure that could take her life. I am asked all the time how do I live with that knowledge? Some people have called me a saint, a warrior to live the way we live.

I am no saint people. Not even close. As for the warrior part...that job is my daughter's.

How do I get through each day? To be completely honest, I have no freaking clue. I just live. I get up in the morning, I take care of my family and I go to sleep at night...or not.

Some days I get angry about Courtney's circumstances and I have a little bitch fest with God where I inform Him of his wrong choice in a mother for my daughter and give Him what for. I don't bother asking why, I just make my displeasure known. On these days, He always lets me know without question how incredibly blessed my life really is making me humble myself and ask for His forgivness.

Thanks goodness He has always given it. He's a good man that Jesus of Nazareth.

There are days when no one in my house can do anything right and boy do I let them know it. There is hell and damnation, fire roaring forth from my mouth and on these days, I loose a little of my family's respect. These days are even harder than the ones above because I see the hurt plainly before me and I know that I am the sole cause. Thanks be to God for the gift of forgiveness. Where would I be without it.

Alone...very alone...

Tonight I was sitting in the living room knitting and Courtney was right beside me humming and happy. Then WHAMMO she goes into a six minute grand-mal seizure and starts turning blue. She begins to choke on her own saliva and her eyes are rolling around like billiard balls on a pool table. Tears stream down her face and her body curls into this horrific position, stiffening at odd angles all while her arms and legs pulse. She is gagging and choking.

She is turning blue.

I sit and hold her head and protect her airway so she can breathe. I wipe the drool and spittle that comes down her chin.

I pray.

I wonder "Is this it? Now Lord?"

I encourage her to breathe. Mama is here. She is safe. Just breathe.

Eventually she does and the color comes back to her face. Her body quiets itself and she relaxes into my arms. Then the coughing comes. All the phlegm knocked loose with the violence.

I suction her. I rub her back. I tell she is brave and strong and her Daddy and I love her so.

She closes her eyes and sleeps deeply. I hope her and more for my comfort than for hers. Daddy lifts her into bed and she is at rest.

I look down at her sweet face and am struck that it is Courtney who has to survive each and every onslaught. She is the won who fights to remain here doing the job God gave to her and her alone.

She is the saint.

She is the warrior.

I am just lost in the Hall of Mirrors desperately searching for a way out, knowing there is nowhere to run and that nothing will ever look the same.

How do we do this?

I'll let you know when I figure it out.