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

Nepenthe

I heard it on television, some time ago.  It was a national spelling bee word, and it's rolled around in my head for awhile.  When the contestant asked for the definition, I learned it meant solace from grief.  Its origins are Greek, the word mentioned in ancient literature and mythology as a "drug of forgetfulness."
I am aware of my own medicine for sorrow.  He is literally a little anti-depressant. He jumps on her bed, tosses pillows and burrows beneath quilts, where she can only lie still.  He flips the light switch on and off, calls out light and dark, watches the sparkling crystals spin, when she is silent and sees black.  He pulls books off her shelf, scatters dolls on the floor, plays with toys that otherwise sit mocking, unemployed.
I'm not sure whether sadness is an elected condition, but choosing happiness is often hard.  I choose it over and over, hoping it will become habit.  I look for ways to alleviate heartache and I always find one in him.  Chasing away the sad is a big responsibility for such a small person.  His opiate effect lets me forget for a moment though.  And I'm pretty sure he'll always help me remember, too.

JEB

Pricey

Some pictures are worth more than a thousand words...

JEB