Wednesday, April 25, 2012

We Don't Go Long

without death.

We lost another little one last night to Cardiomyopathy. Ellie. Please send the Ayers family tons of love.

I had a post about how we experienced our first rejection from a private pre-school. I had wanted to write about how hard it was to feel that rejection based on fear and ignorance. It was a pre-school, it was for three hours in the afternoon. It was only going to be for 6 weeks. I wanted to write all about how I understood that this would be the first of many for Simon. "You can't... Not a good match. He won't be able to...I don't think so.."
But I don't care right now. I might tomorrow and even make the call to see if there's any possibility of changing their minds but right now, this morning, it doesn't matter.

Because Simon is still here. He sat on the couch and played with his Ipad while getting a tube feeding. He told me he was frustrated when we had to put it away and head out front to catch the bus for school.  He will come home and nap or not nap today.

So how do I let go of the terror I feel when he's sweating again while sleeping these last few days? How do I even consider sending him to an after school program where there will be a host of new germs just waiting to vacation in his sweet little body? How do I plan for a trip to Albuquerque this coming June where the elevation is going to demand his heart to work harder? How do I send an ocean of love to a woman that I've never met but feel a deep connection with because of a diagnosis that our children share?

How do I go through my day today not wanting to touch and hold and kiss and smell and laugh with my little boy for fear that tomorrow might be....different.

It's exhausting not living in fear. I think that Jaime and I do a really good job of it. If you'd seen us playing an impromptu game of tag/laugh your guts out the other night at the drive-in burger joint you would have been really proud of us. We are a happy trio J, SL, and I.

But it's mornings like this where I feel the fault line's shift and the ground doesn't seem so stable. I know that somewhere else a earthquake has hit and a piece of someone else's world has fallen away.

I live in California where there's a lot of talk about fault lines and where and when the next one's gonna hit.
I also live in a world with Cardiomyopathy where the same is true.


Getting ready to dance (don't ask- just take it in)

With cousin Charlie- all dressed up and hittin' the Town

 Sleeping with Mama on the Train to Sacramento

So this is the Capitol- This is my "I have no faith in Government" face

Riding the Old Steam Engines in Old Sacramento

 At FairyTale Town with Mamaw

 If I only had a heart (that was smaller and not spongy or dilated...)

 Dude, that's big

 Birthday Party Cupcakes (A La Godmommies Dre and Joan)

Yes you are!

Just take those old records off the shelf....Risky Business anyone?
This is how we do it.