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

Following Suit

One minute it looks as if the trees have dressed for a party in our back yard, branches streaked crimson and gold, the dwindling embers of sunset.
The next, the wind blows and the lawn is covered in crunchy leaves. 

And while this time of year sees most trees half denuded, Tucker tends to follow suit.
JEB

Fun(d)raising

There's the idea that when you give something away, you no longer have it.
But sometimes it feels like you have more, doesn't it?

JEB

He watches, wags and waits for affection.

I'd like to believe he wishes for a cure, too.

He is a dog who invites the descriptor good boy.
He'd also like to invite other friends of Celia to walk with him tomorrow.

JEB

Take Ill

Most days we live with a fairly particularized parental angst.
But he looks like a typical two year old, Andy explained, as Tucker lolled around the living room, jammies half on, bilateral snot trails running down his face.  This is just the normal kind of sickness for which there is a relative abundance of advice, and complaint.

Resting near him on the couch was his sister, a persistent perspective check.  She is an emissary, a blunt and very human reminder of what's big and what's not, of what's hard and what isn't.
We've filled up humidifiers, doled out Tylenol doses, anticipated sleep interruptions.  He is not miserable.  His ailments are temporary, his symptoms treatable.

With a lethargy that wipes the shine right out of his big brown eyes and without an appetite for even green popsicles, we can tell he feels puny.  But as bad as we feel for him, we are simultaneously relieved to be inside the known malady norm.

These pictures were taken last week, when Tuck felt good and was experimenting with sunlight, a mirror and a bouncy ball.  He'll be well again in no time.
JEB

We do, huge and aching.

Our lives will not proceed as we loosely envisioned even before her birth, but our grief over perceived and predicted loss has been amortized.  And while we mourn the child she won’t turn out to be, we love her in a huge and aching way.

The truth is, we can’t plan who our children will be – whether they’ll lead the band or excel in sports, whether they’ll yearn to fit in or fight to stand out, whether they’ll be tall or short.  We can only plan to love them.
And we do.
JEB

Dressed

Tuck, where are your pants?  If you'd like to go play at little Molly's house you'll have to put on your pants.
I left my dressed by the potty!

Hey buddy, it's time for church.  Let's get dressed.    
I have dressed in my my room!

Tucker, you need a bath.  Help me get your clothes off please.
I do it!  I take my dressed off, I do it.

JEB

"Browing"

It’s one of those words that, despite modeling the correct pronunciation by repeating what he’s said, continues to be his own.
The berries on my tree are done browing now. 
Hey, I browed all those new flowers (mums)!
And he uses it most often to talk about baby brother.  The baby in your tummy will brow big just like me!
Now that I’ve written it down, it seems perfect. A little brother, growing.
JEB

Upcoming

Andy and Celia were on our local NBC channel this morning, working to raise awareness of Batten Disease and promoting upcoming central Ohio fundraising opportunities.  We were so impressed with Gail Hogan as she hosted the Spagio Hospice event last winter, and were pleased with her reporting on Daytime Columbus today.



Please visit the Current Fundraisers tab at the top of the page to learn more about Barkin' for Batten on October 15th, and the OSU MICU Walk for Celia on November 6th.

JEB
The image above was designed by Joshua Smerdel, a Batten parent in Northeast Ohio.  It will be used on shirts for sale at Celia's Walk.

Being a brother is better than being a superhero.*

As his own world expands, their shared world shrinks, the territory of common experience left behind.  Still, he includes her in life.  He leans over, hunched like he’s protecting a secret, to tell her what we're having for dinner or who is coming to pick her up.

A few days ago, as she lay on the floor where Andy left her while he fetched diaper changing supplies, Tuck paused near her to tell her she was beautiful.  "Wait right here," he said.  "I need to get my stool."  He took the stairs to his room, carried the stool down the hall to her room and set it in front of her dresser, so that he could reach the drawer with hair things.  He chose a pale pink Easter bow, one that neither matched her outfit nor corresponded with the season.  He put the stool back and carried the bow downstairs.  He described the ribboned rabbit as he clipped it on top of Cel's head, and again declared her beautiful. 

And that small world they do share?  Incredibly beautiful, too.

JEB

*Marc Brown, author of the Arthur series