Tuck-or Treat

Withdrawal

Tales of a Female Nomad (Rita Golden Gelman) introduced me to the Favor Bank concept, which asserts that the entire world is a bank – we all go through life making deposits (whenever we do a favor for someone) which means that whenever we need a favor we’re entitled to a withdrawal.  It’s just as important to take out as it is to put in, because each time we accept a favor we’re allowing someone else to make a deposit. 

An abbreviated list of donations for the raffle at Celia's Walk, Nov 6th.
 
4 tickets to CAPA's A Christmas Carol
Hot Air Balloon ride for 2, courtesy Mike Ruede
2 Blue Jackets tickets
Beauty in Life professional photography package 
Cardthartic's House of Cards, featuring Celia
LibbyJo's Fine Art painting on canvas
ladies' Cool Tie Dye Ohio State shirt
Broadway Design Group Nail & Spa package
Buffalo Wild Wings gift card and sauce pack
gift cards to favorites like Starbucks, Panera and many more
homemade treats - jelly, jam, honey, professional cakes
and handcrafted items - scarves, baby hats, holiday quilts, felted purses

With SO MANY people giving, Gelman's Favor Bank seems like a good idea for those of us who have trouble taking to keep in mind. 

JEB

And we did.

After dinner, I asked Tuck what he’d like to play. Kitchen? I wondered.
Cars?  Instruments?  Stickers?  Blocks?
Let’s lie down with Celia, he suggested. Mama and Tucker and Daddy and Colby can lie down next to Celie.
And we did.

JEB
An astute blog reader might notice that Tucker has a favorite shirt... :)

Perchance to Dream

Shakespeare said Sleep knits up the ravell’d sleave of care.
Shakespeare was never a mother.

Keep Asking

I think Andy's post begs another question.
Maybe it's not whether you know someone with Batten Disease, or whether you know Celia.  Maybe the question is whether we can afford not to keep asking.  And that answer is easy.
I'm willing to bet that those who do know Celia would agree -- she is worth it.

Take, for example, the fifth and sixth grade students we recently heard about who, when they've found money at the bus stop or on the playground, turn it in, but when it goes unclaimed after a given period, instead of keeping it they ask to put it in the school's "Celebrate Celia" fund.
Or the cousin who has opened an Etsy shop, who enjoys painting and has expanded her work to include techniques - like using a fork instead of a brush - to create art that appeals to visually impaired people, even children like those with Batten, who are losing sight but can appreciate paint through touch instead.  All of the profits from sales of designated paintings will go to BDSRA.
And at the grocery one day last week, where the lines were long and Celia's grandma let a young man holding only a greeting card go ahead of her.  While they waited, he spied her reusable Batten bags and asked about it, several questions.  After he paid for his card, he thanked her again, told her he has MS and that he hopes that finding the cure for one thing will lead to treatments for all neurological problems.  He handed her all of his change "for research" and went on his way.

So many of you help us introduce Celia to the world.  To those of us who know what Batten is, nine or eighty-seven or four hundred, any number is no worse than one.
One child is more than enough.  One child is too much.
Keep asking.

JEB

I know Celia

Ask any stranger on the street about heart disease/cancer/insert horrible but well-known disorder and you will get a similar response.  Eyes narrow, mouths turn down, heads gently nod.  Often they'll begin to tell you about the neighbor's child with autism, their own mother with breast cancer, their uncle with a failing heart.
Ask the same stranger about Batten Disease and heads tilt, eyes go wide and shift left then right, shoulders shrug.  They might ask you to repeat the question, to spell the word.
Batten Disease is faceless. There are no infomercials on late-night TV.  No weekend telethons.  No spots on the evening news about (insert someone famous) fighting Batten.
Pharmaceutical companies don't know about Batten Disease either.  Scientists count bodies to quantify cost.  And Batten is too rare, too unprofitable.

Batten Disease is little known in medicine, and in general, and it's underfunded in research. 
Maybe we're just asking the wrong question.  The question is not whether you know anyone with Batten Disease.
 
Do you know Celia?

Andy

Oh, his smile.

It is not limited by the bounds of his face; rather, he creates an atmosphere that smiles. And everything in his orbit smiles in the smiling. Especially us.

JEB