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Sometimes I'm afraid to give certain things voice, that with the words I’ll fall into an abyss.  But there's a sense of relief and release through writing them.  Most posts are positive, not in a manufactured way, just positive – because we are.  Mostly.
Writing about the opposite, though, can squash it.  Writing about the bad times helps keep the negative from growing and festering, lets those thoughts break free and fly away, taking the burdens we carry with them.
And anyway, even when she cries and even when we're tired, no matter how uncongenial our circumstances feel, this house is full of so much love.  

JEB

Crying

When she’s having a bad day, the tension inside the house feels worse than the temperature drop outside the front door.  Tension present enough that we can almost touch it, elusive enough that we don’t always acknowledge it with words.

Her crying, like a battering ram, assaults my being, a hot bloom of outrage burgeons in my chest.  Listening to her cry is agonizing.  While sadness spills from her eyes, pours from her mouth, mine begins in my heart, reaches down past my stomach, touches my toes. 

When tension and tears hover in the air like an ugly mist and I feel like a weather vane blown around by the winds of turmoil, I head toward laundry needing folded, counters needing scrubbed, problems I can solve, small surmountable tasks, although I’d really rather curl up on the couch and let the day pass without my participation.

And when the days with her are limited, worse than all the sadness is the shame that follows those feelings of a simple, temporary escape, a guilt that is similarly difficult to acknowledge with words.

JEB

Stained Glass

He didn't approach the project as I intended, but that doesn't really matter.  And why would he, why would I have expected him to, what with his plethora of ambition and his poverty of limits.

He acts with sudden speed. Or he dawdles endlessly.
He throws fistfuls of thin paper at a sticky target.  And then he digs intentionally through the dumped-out pile, searching for just the right color, just the right size, just the right spot to carefully attach the perfect piece.
He is both fast as light and heavy as lead.

Sometimes when I am somewhere, I think about what time I need to be somewhere else.  And it’s usually those times that Tuck finds shiny things to bend over and study, or big things to climb on.  Other times he runs simply because his legs are capable.  He runs to the breakfast counter, to the bathtub, to the front door mail slot.  But when I need him to hurry he becomes enamored with his jacket zipper, up and down and up and down, or fascinated by the way the seat belt buckles, snap and unsnap.
He turns arts and crafts into intramural sporting events, and he turns excursions anywhere into museums of sensory pleasures.
He turns everything into a party, and really, I’m lucky just to be invited.
JEB

We've been told that more than $4600 will be shared with BDSRA as a result of Celia's Walk to Fight Batten Disease!

So Grateful

It's a complicated thing, to be grateful for something you wish had never happened. It doesn’t change the power of that gratitude but it does create an interesting challenge to explain it.
Andy tried, as he spoke at the conclusion of Celia's Walk yesterday.  He said that although it's easy to focus on all the things we've lost, all the things we'll never have with Celia, it's also hard not to miss all the blessings, all the things we may never have known if she weren't ill.  How most days, even when we feel the heaviness of her fate, there are so many things tipping the scales toward good.  How our gratitude often outweighs our sorrow.
All of your gifts, actual and emotional, mean so much to our family, especially on days like yesterday.  You dug around in the deep pockets of your hearts, in the hidden places of your budgets, and you made a difference in the battle against Batten Disease.  And we are SO grateful for you, and for your generosity.

Several of Celia's young friends had thoughts about the walk.  These little ones are wise beyond their years and the observations their parents have recounted are worth sharing:

As they got ready, A's mom was reminding her about the special walk for Celia - how lots of people would gather to walk together.  Her mom was about to explain that everyone would pay money to walk and then the doctors would use the money to make kids like Celia better, when A excitedly exclaimed, "And while we walk we'll ALL think about how to help the doctors make Celia better."

On the way home from Celia's Walk, the G boys were talking about what Batten Disease has done to Celia's body.  They remembered, and understood, that she could still hear them even if she couldn't see them anymore.  They were curious if her heart was "hurt" like their Grandpa's was after his heart attack.  Their mother explained that Celia's heart was still working.  The boys were quiet for awhile before M concluded, "So Celia is like Santa and like God.  She has a good heart and can hear what we say even if she's not near us."

Given the option of going to church or to the walk, sweet E decided that she'd go to the walk and that "God will understand."

Special thanks to Holt Crossing, where I taught for seven years, for Celebrating Celia the week leading up to the walk, and for making such a large contribution toward research.

  JEB

Across the Field

  

And on the field.

Standing at the lowest point in the Shoe today, we were swept high above normal life, into a place where happiness was ahead by hundreds of points.  Smiles maintained the lead all day, thanks (again) to the kindness of one man.

J&A

She has.

Eyelashes cast blue shadows on her cheeks, and there is sadly no sure-fire way I can help a smile remake itself on her face.
But her hand lies partially uncurled on top of the clothes that cover her frame, like she’s offering me something I cannot see.

And she has.  She has offered so many things.

JEB

* We just learned that the Georgesville Road exit, off 270, will be closed this weekend, so if you're coming to Celia's walk via 270, please consider using the Broad Street or Grove City exits.

Nesting

We've had more than a vague awareness of the due date for a really long time, but today marks the month and along with that the reality of the upcomingness sort of settles in.
The crib has not been assembled, but we have spruced up the nursery a bit.  The baby doesn't have a firm first name, but we do know what we'll call him.  We haven't packed any bags, but there's a box of tiny diapers in the garage.
And although things will never be perfectly feathered here, we are eager to hold this little bird in our hands...
JEB