and then I did.......

Today was a hard day. 

Every day lately is hard, but for whatever reason.....today was the worst.

I didn't get kicked, punched or hurt during a fit.......

There were a few hard things Parklen did today............
Some invasive....
Some, not so much.

Parklen had a stress test today......
He and I had talked vaguely about it for weeks.....
Just giving him an idea of what he would do.....
For a normal kid, a test like this would be no big deal......
Just a walk on a treadmill.
They don't normally do kids that are 5 years old.....
They usually put them under and give them a drug induced stress test.....
A gal on Parklen's team talked them into letting him try the "Big Boy Way"

I have to give you a little bit of background....
Parklen doesn't walk..
Hardly ever.
I carry my boy almost everywhere he goes.  He has been so sick and in the hospital so much that he suffers from a great overall weakness.  His endurance is non existent.  Sometimes he will try to walk and never lasts for too long. 

Today....He almost ran.

He was tired....he had had a rough day already....
and yet, after they hooked him to the many wires..He proudly stood on the treadmill and began to walk....and then quicker and then quicker still.....He was smiling....all the way to the end of the test, even through tears....he smiled.

My heart was beating quickly as he his tiny legs were moving.....It was in the moment of pride on his face that I could feel my heart break.

I cannot explain it....It was his happiness in such a difficult situation that tore at my insides....
at that instant the thought that I had avoided.....the very thought that I have pushed out of my mind, crept in.

I held in the tears.....I maintained a smile.

I scooped up my boy and walked him out of the room....squeezing him a little tighter than before.

I drove him to the apartment.....making one stop for his favorite Chinese food.....
He quickly fell asleep on the couch and I retired to my room for a bit of quiet time and reflection.  I was reminded today by the medical staff that they have never transplanted a kid with Parklen's disease.....and again that they don't know how things will "turn out."

The sound of Devan's voice on the other end of the phone....started the flow of tears.
After hanging up, the words came......
The words that no one has said....
The words on every person's mind....
The words that even the doctors have avoided.....
The words that I have refused to say.....
and then I did......out loud
"I don't want Parky to die."

Watching his frail body today on that treadmill just summed his life up for me,
He has always been so fragile.
Always been fighting.
Always trying to smile through tears.....
Always on an incline and trying to climb.....
And as hard as it all has been.....
his fight is really only about to begin.

The talk about Chemo and all the unknown just set in the fear.

My baby....
My Parky.....
Risking all of himself......
Putting his tiny and fragile self at risk.....
all for the chance to be a little boy.....

Today was hard.
Tomorrow I sign all of the paperwork....
Tomorrow will be harder.
My signature.....
setting this all in motion.