"Mother, I'm sorry I was born."

My newest goal:

to become a PIE MASTER!

I'm so excited.

I don't bake well.

So I made my mind up that I'd bake until I'm an expert.

Did you know that Pie crusts can be made so many different ways?! I'm going to attempt to make it with VODKA! I hear it's awesome. We'll see. I tend to make "awesome" baked goods not so awesome.

Anyway, back to my original thoughts.

I've been reading a book. I got it in Japan and it's about a child/(ren) who is severely disabled.

The book is written after the child has moved on at age 15, by his teacher.

I'm so touched.

{Life can be so different in Japan.}

Parents can feel it a curse to have such a child born into their family, like they themselves or their ancestors had done something wrong to deserve it. Next, they are likely to fester the thought and actually be a step away from jumping in front of a train or into the deep waters to end both the parent's and the child's lives, simply because life is hard for them with a disabled child.

I sit here in awe as I read this book. Tears wet my clothes and I had to resort to wiping them on Ronny last night.

This book depicts both the challenges and the DESIRE to live of the parents and this child.

This child was barely accepted into handicap school because of his severe handicap. He can hardly do anything on his own. And yet, this teacher finds the glitter in his eyes and will to live and do everything other children do in this child's life.

I think back to my life.

Jaiden was going to be the child in this book.

Tears fill my eyes. NOT because I "dodged" a big bullet of challenge, but because I felt as though I could understand a 1/100 of this family's sentiments.

I know what it was like to find myself in the darkness of my own head, thinking 'how much easier would it be to not have this child in our family...' awful? yes, but unless you've been in those types of situations where every second is a matter of life or death and your world has stopped and gone to mad land, you wouldn't know. The stress and exhaustion compromises your very sanity and for a moment or a while, you wished it were all different.

I also remembered Dr. Webb (name has been changed)'s advice to let him go "because the worth of his life would be nothing," after promising us that Jaiden would be nothing but a sponge.

These children might be a vegetable on the outside, but their minds are so full of life.

There was a story in the book where a mother is wheeling her young son and herself out to the train tracks. She says she pushed the wheel chair from behind as if being possessed. All that was in her head were the cruel comments, the glares, the looks, the whispers and the challenges that faced her each day, each moment of the day from those who surround her and her disabled child. As she neared the spot of plotted death, her son, having detected danger turned his unwilling head towards her and got out the words, "mom, what are you doing?"

Still walking as though she were asleep with eyes open, she responded;

"you know son, life is nothing but sadness and misery. if we just ended it now, we'll be happier."

to that, the child quietly replied, though struggling some to communicate;

"mom, if you want to die, you'll need to do it on your own. I have so much to live for, I want to do so much more."

At that moment, the mother says it was as though she was punched right in the face.

She had a son, and though the quality of his life was questionable to others, that son wanted to live.

He was not her, and she didn't have that right to take away his life.

I thought back again about the decision being placed upon me and Ronny.

To let Jaiden live or to not.

The decision was ours.

The doctors told us "pull the plug, it's for the best."

Still, something held me back.

We watched Jaiden from the glass incubator.

He fought for every breath.

EVERY SINGLE BREATH.

Though his lungs failed him, though he couldn't even breath on his own,

he fought.

HE FOUGHT!

We'll have a vegetable for a son, we said.

But nonetheless, he is ours, and will always be ours.

Let him live.

LET HIM LIVE!

How glorious it is to live.

We may take it for granted at times, but those who are not able to live as freely as us seem to understand the price it takes to LIVE.