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.

Sucks.


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.

8 comments:

Maxine Walsh said...

You described it perfectly...living with this horrible disease...living and not just existing! making sure our children live, don't just exist, have fun, with other kids...yet stay safe and don't become neurotic like mummy!!

KS said...

hugs and love to all of you!

andreana clay said...

sweet post love. kisshugkisshugkisshug

Tanya said...

Love & Hugs from one momma to another momma... These are the fears that every momma has written in her heart. Simon is not bound by his body, he is a beautiful spirit. Thank-you for sharing your love for him & all sick children who struggle. It opens the door to thousands of prayers for each one of them.
"making the decision to become a mother is momentous, it is to decide forever to have your heart go walking outside your body" (Elizabeth Stone quote)
That's my very favorite momma quote!
Love & Prayers,
from Canada

K. said...

I still don't know how to live without fear. Both ways are exhausting. Well said, you amazing woman.

jc201613 said...

Jamie, Laura and Dear beautiful boy Simon-

I just want to share with you how much "meeting" your family meant to me and how much it gave me hope. Ellie's numbers were as bad as Simon's in the beginning and yet here Simon is THRIVING!!!!

I think part of Ellie's purpose here was to bring people like you into my "life" to bring awareness of this HORRID HORRID thing called pediatric cardiomyopathy... and well to just LOVE.

Heather said...

First of all I want to say, *hugs for all of you*!
Your love for each other and strength really shines through this post. I'm glad that Simon has parents like you.
Hold on when it feels like there are cracks forming under your feet, you are not alone. We're all here with you.

Elaine said...

I've just spent a big part of today going over the comments on lachlans facebook page...it's still so hard..so raw...I don't know how lee and brooke are doing but it doesn't go away. One of the things that gave me a great deal of comfort were all the beautiful words, comments and love that was sent across the miles. So many people sent their love to a family that they've never met. You and Jaime and Maxine here today and all the others (thousands of them- that weve never met) all made a difference. Thank you!! And don't ever doubt that the words of comfort and love and fun and family through your blog, make a difference...ps happy birthday x