Abundance

This morning I deemed it time to begin holiday decorating.  I hadn't anticipated how much help I'd have.  Although I got out coloring books and farm animals, Tuck's interest lay squarely in the old laundry detergent buckets labeled Christmas.  He pulled out funnel trees, which quickly became hats and megaphones.  He broke Joseph's hand in a hasty introduction, but then situated him in the center of the living room rug, right in front of the television.  He applied his favorite "the babies on the bus cry waa, waa, waa" lyrics to a swaddled Jesus.  He bit off the nose of a birdseed Santa.

I haven't managed to replace the acorns and wheat on the mantel, my primary decorating goal today.  But in the midst of a scene in which my intentions appear to have gone awry, my attention is drawn toward what we have done, what we do have.  My heart glances down at its source of joy and I find indescribable magnificence.

JEB

Home Again

Happy shouldn't be limited to an hour.  We spent a week.

The only way we could've been happier is if Celia were able to be part of the fun...
JEB

Ridiculous Amounts

We've heard a few reports from Celia's Walk today. 
It sounds like the sun was shining as brightly as Celia's smile.
We understand there were LOTS of participants this year.
Funds raised for BDSRA totaled over $4200.
Celie's Aunt Kate said the walk was ridiculous amounts of awesome.
I wish our words could find expression to convey equal amounts of gratitude.

 JEB

Normalcy, Cherished

To the extent that anything about Batten Disease feels normal, we squandered most of the afternoon on the floor with books and with each other, and the reading and the poking all felt fairly typical.
I couldn't love these two any more than I do.

A few of you have asked about contributing to Celia's Walk.  Checks can be made to BDSRA, and sent to 292 Crandall Dr, Worthington OH 43085 c/o Sara Zeller.  If you'd prefer to make a donation directly to BDSRA, please make note of Celia's Walk so it can be counted in the MICU's total and applied toward infantile research.  

JEB

Contagious

Gratitude is, isn't it?  And this is a good month to catch it.

JEB

Tenacious C

A few weeks ago Celia was very, very sick.  Each day, as her cough progressed and her lungs filled with more fluid, we prepared to say goodbye.  Among other things, LOTS of other things, we worried that she wouldn't be able to be at her walk.  But she is resilient, and even though she does not have the life we meant to give her at birth, she is a master of good living.  And she's not done yet.

 Kisses from Vanessa and getting to know new cousin Zane must be part of what Cel's sticking around for.

Celia reminds us what life is about.  It may be one of the primary reasons so many of you have grown to love her.  It's certainly one of the things we love most about her, the way that - even though she doesn't have much to work with - she lives well, and teaches us to do the same.  It's one of the things we hope to keep with us after she's gone.
We cannot wrest control of Celie's fate from her defective genetic code.  She will die.  We know that we can't help her.  But we would like to help children like her, and you ensure that we do not have to do that alone.  You share with us your sincere interest in our effort to eradicate the disease, accompanied by your capacity to give without expecting much in return.  Thank you, in advance, for helping the OSU MICU's campaign to raise awareness and critical funds to fight Batten Disease.  All of you help us create the Celia who will live in our minds forever.  

Sunday, November 21 -- 1:00 pm

Antrim Park --  Worthington

$5.00 per walker, 100% of proceeds to BDSRA for infantile research

additional $5.00 for BDSRA shirt, if interested

If we were able to be there Sunday, we'd hug each of you.

JEB

When You Love Someone

all your saved up wishes start coming out.

-Elizabeth Bowen

JEB