A special request...

Zachary is going to have major brain surgery (Hemispherectomy)
 on Dec. 14 2010. They are going to be removing the whole left side of his brain. 

Zach has a seizure disorder that comes from the left side of his brain. He has constant seizures going on 24/7. Without this surgery Zach's life will be cut short in less than 2 years. 

Please help me (his mom) in celebrating his life, by doing what ever you chose to do.
For those that want to...
We will be having a special fast on December 12th.
We are planning on ending the fast at 6pm with prayer. You may do this in your own homes.

Prayers would also be great on the 12th and on the 14th (the day of surgery).
Good thoughts.. good vibes... any way you chose I would love the support.

We love Zach so much. He is truly a miracle. I can't imagine my world without him in it.

As his family... We have chosen to just focus on the positive end result. We are not going to be discussing the details, because we feel that will deter us from remembering why we are doing this surgery.

Thanks for all your love and support. I am so grateful for the support circle we have in place.

Love,
Zachy's mom
Jennifer Kohl.

The closing of a book

I have had a few days to internalize the information I was given this weekend.

I seem to be really good at going through the stages of grief.

Right now I am mourning the loss of the little boy I have right now.

I do know that the decisions I have made in his life were the right ones.

It was not a easy choice to alter his body the way we are.

I do know that without this surgery he will only be with us for another year or two at the MOST!

Zach's mission on earth is not over.

My life is changing. Everything that I am comfortable with is leaving.

Everything that I know has to be change. It has to change TODAY!

I don't like that kind of change. I like to have time to work things out.

Change that comes in small pieces is great. Closing my "book" forever and starting over is scary.

I am still amazed by the trust the Lord has in me to take care of this miracle.

I have really started to wonder what I have done to be blessed with all of this. Why did he chose me?

I am ready (sort of) to take this on.

So for right now I will buy some sweet new pens and take this new book, write my name on the inside cover, and begin with Chapter 1.

The journey.

I am sitting here in the intensive care unit with my son.

I have a love hate relationship with this hospital.

This place has saved my child's life over 100 times.

I adore the staff and the time they have spent helping me keep Z alive.

However, I have been here to many times. This place should not feel like home to me.

I should not know the names of nurses or have them recognize me, Z, or anyone in my family.

I should feel panic when life flight flies over head.

I shouldn't burst into tears when an ambulance drives by.

Z should not be so full of scar tissue that it becomes impossible to get an IV.

Our normal should not be having a giant needle embedded into Z's bone.


This IS my normal.

I don't like it to much.

I am thankful for it though.

The view from our room isn't so bad either.