I could be wrong.

Some days, when I'm feeling well rested and he's on his best behavior, when he sits at the counter and leads our conversation in astonishing directions and every task he undertakes is remarkable, I think this must be my favorite age.  He is a year and a half of perfection.  How could any other stage be better?
When he perches with one leg chicken-winged beneath him, his pink tongue touring the perimeter of his lips, carefully collecting stray hummus, I think this is it.  When he walks through a group of gathered relatives (once he's done with a preliminary peer from behind my knees) he's as social as a politician working a crowd, shaking hands and giving high fives, happily greeting people by name.  Hello twenty month Tucker, you are my unabashed favorite.  When he smiles at me and makes me feel like my very existence, my proximity to his block building, my involvement in his read-aloud routine, counts as the pinnacle of his day, possibly his lifetime, I am smitten.  Right now is ideal.  And other days, even when I'm exhausted and he's off kilter, even when he's reorganized the pantry shelves and abused his permission to open the refrigerator, when his head is slightly cocked into an apostrophe, eyebrows furrowed and face glowering, I wonder whether he'll ever be as splendid.  Surely this time between one and two is the best.  

And then I remember what it felt like when he was just a lump on my hip, an immobile bundle of digestive processes.  That was my favorite, that and the time before, when he fit so perfectly in the hammock of my arms.
Right now twenty months is my favorite.  But I'll be happy to let him prove me wrong again soon.
JEB

Honored

We've mentioned Cardthartic on the blog before, the lovely greeting card company that honors emotions.  They featured Celia on a card last year, and wrote a generous check to BDSRA.  They're honoring our family again, and hope to soon write another large check that will fund research to fight Batten Disease.  Between now and the end of the year, twenty percent of all Cardthartic sales will go to BDSRA.  All sales, not just Celie's card.  And shipping is FREE.  Visit Cardthartic and stock up!  Enter promo code "Celia" at checkout. 

An aside:  As generous as Jodee, Cardthartic's founder, has been with profits, she's been equally generous with writing credit.  Mom and I have both shared a few words with Jodee which she's turned into card worthy ideas.  If you have time to shop, click the "learn more" button beneath each card... the stories behind some cards are interesting, and you might run across one with an "author" you recognize :)  You might also notice a few photos by Celie's great aunt Cherie, and lots of images by our favorite local photographer.

JEB

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

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

Loose Leaf

The leaves on the trees are yellow and brown,
yellow and brown, yellow and brown.
The leaves on the trees are yellow and brown,
all through the town.

 JEB

Here is the Church

Nothing Short

We've got this perfect Tucker of the saggy diaper and the multiple word strings, of the finicky food choices and the inclination to dismantle everything, of the happy heart and the tiny tantrums. Watching him, our second, typical child, pass through infancy and breeze through toddlerhood feels nothing short of miraculous.

 JEB

Tense

Golden moons glow around her pupils, eyes that saw a world turn dim and hopeless.  Her smile, unreserved, flashes and my own muscles relax.  She's quiet, but when I lean in close -when I listen with the ear of my heart- the message resounds, deeper than words.   

I want more than anything to know her, to understand all of who she would have been, to crawl under her flesh and feel her heart beating in my own chest, to invite her thoughts to run through my mind.  Living where goodbyes loom, I'm still conjugating her fate in the conditional tense – if she lived, if she grew up, grew breasts, grew her own family, if she trudged off toward her own horizon.  If.

No one suggests it's our fault, but our inability to stop it feels like our chief failure as parents.

The history of family is encoded and inscribed in her little frame though, giving all of her parts voice to speak.  And even the smallest chat the language of love.  Unconditional.

JEB

He Has

An ornery streak. 
Irresistible eyes. 
Our hearts around his finger.

Peek-a-boo, through a hole in a sign at the park.

JEB