HDHusband woke me up the other night to tell me about this 'amazing article' in the Wall Street Journal I needed to read. It had really affected him, and as he said to me, "What is this strange moisture coming from my eyes?". Ha! I put the article next to the bed and promised I would read it very soon.

And I did.

I bawled just like him - you know, if he'd cried or anything.

The basis of the story was a friendship forged by two mothers who each had a son with a rare illness that "(estimated at 1 in every 40,000 births), inherited and often fatal disorder that disables the heart and muscles". These mothers were informed of a so very new treatment being done to possibly help children with Pompe disease. The doctor made an enzyme in the lab, and then would infuse it into the children via IV.

One of the little boys got so much better. They said by all accounts, you would never have known he had any disease at all; he looked like any other little boy. The other little boy kept getting decreasingly worse. They said he would lay in bed, watch some cartoons, and even then, stare into space. He was only 'up' for a few hours out of the day.

His parents had to make the decision to stop treatment. They made a journal and wrote down the reasons why the decided to stop, the reason why they were going to stop ventilator support. They brought in all of his family, doctors, and nurses. He got to watch his favorite movie again. They told him they loved him, that he was going to a place where he'd be happier, where he wouldn't hurt anymore. The doctor increased the morphine drip and the little guy died peacefully soon after.

It was a heartbreaking article.

As a parent, I can't imagine ever being in a situation where I would have to choose to let my baby go. Children are suppose to outlive their parents. And children certainly shouldn't be made to suffer through any or all of these diseases. But they do. And you realize, of course, after reading such an article how lucky you are to have a healthy child.

Of course, both HDH and I were naturally imagining US being in that situation, that it was HDToddler, or "What if?" and "What would we do?". We talked about the instances in our lives where you get this "making sure your heart isn't cold and dead yet" lessons. One of this article. Another for him was being bedside of an older man who was being taken off life support, and my husband was increasing his morphine drip. His wife was the one ill, and he had stayed home to take care of her. Listening to her talk to her husband and he was slowly dying, HDH said, "It was as if the old man was taking me by the shirt collar and saying, 'Okay you bastard, this is the life lesson you need to learn - THIS is what love really is'". It's only a lesson if you learn.

And all of this reminded me of a song I heard the end of last month. The song was played during the funeral of the mother and two children run over in the crosswalk along with the father - and the father lived. I thought the lyrics were so important, so I share them now with you:

"Two months is too little
They let him go.
They had no sudden healing.
To think that Providence would
Take a child from his mother while she prays
Is appalling.

Who told us we'd be rescued?
What has changed and why should we be saved from nightmares?
We're asking why this happens
To us who have died to live?
It's unfair.

This is what it means to be held
How it feels when the sacred is torn from your life
And you survive.
This is what it is to be loved
And to know that the promise was
When everything fell we'd be held.

This hand is bitterness
We want to taste it, let the hatred numb our sorrow
The wise hands open slowly to the lillies of the valley and tomorrow ...."
("Held" by Natalie Grant)

PS And thanks to everyone who voted for me in this Weblog Best Diarist contest! I landed in third place which is a pretty great place to be. But of course, being considered and even landing in the top ten is pretty cool all in of its own. Thanks again!!