Fireflies

I love the way my memories return when I witness him make his own.

I remember when lightning bugs signaled summer curfew drawing near, and the way their bright tail ends made sparkly “engagement rings.”  Did you catch fireflies as a child, too?

If you marry in June you’re a bride all your life*

We have been together longer than we haven’t.  Nine years ago we began keeping our toothbrushes in the same jar and our pillows on the same bed.  But it was eight years before that when we started holding hands and sneaking kisses.  Then, we spent a lot of time looking at each other.  Now, we spend most of it looking in a shared direction.

Our marriage vows, and the genetic mingling of the two of us, molded us into a little family, a trio, and then more.  He alone shares my particular parcel of pain from the different shape of our family created by her illness, just as, together, we've been graced as a settling down place for our fair share of happiness.  We don’t speak our understanding aloud very often. We don’t need to.  He’s good at knowing how I feel before I know how I feel.  He somehow grounds yet lifts me.  With him is a lovely place to be.
JEB

* lyrics from Seven Brides for Seven Brothers
Photo credit: Ciro Photography

Google doesn't have all the answers.

I lean over, holding my breath while I listen for hers.  Bee stung lips make barely a quarter moon on her delicate face.  I look down at her with tears in my eyes and all the love in my broken heart.  The gentle hillock of her cheek has given way to a cheekbone no longer buried under baby fat.  Her face holds contours yet to be formed, over time she does not have. 

I still wonder what she might have grown up to look like, how she might have spent more days.  I wonder about the minutiae, mostly.  Would she have always liked dogs, to dance, pizza for dinner.  What about shaving her legs, shopping for school clothes and bathing suits, what about sleepovers and hair straightening techniques.  I wonder about these and thousands of other things, questions to which we’ll never know the answers, and questions I may someday not even permit myself to ask.  I do not, however, question our fortune to have this time with her. 

I wonder what Tucker will be when he grows up, whether he'll do well in school, find love, have children.  I look forward to finding out.  I'm afraid Celia seems to recede in size and substance next to her larger-than-life little brother.  There is only one certainty with this disease that is mysterious, and that is that she will pass far short of promise.
JEB

Gratuitous

Grandpa Rod retired this week.  He wouldn't have wanted an extravagant celebration, so we ate hot dogs for dinner and played at the park.  It was a fun evening, and we have a surplus of snapshots to show for it.

Garden of Eatin'

Tuck could journal his activities with "My do it"s and "No, no, no"s.
And the occasional "Fank you" or "Hold me" or "I love you."
He does journal his adventures through grass-stained knees, dirty fingernails, bruised shins, and skinned elbows.
And frequently with food leftover on his shirt.
JEB

Almost Irresistible

He jumps off the side of the pool until it's time to go home.  "Last time," we say, before he soars and splashes.
He chooses two or three books at bedtime and, right before lights out, we remind him, "Last book."
He throws pennies into the fountain and, our pockets entirely empty, we explain, "Last coin."
He climbs the stool to reach the candy bowl, having climbed it for the same purpose minutes earlier.  "Last handful," Grandma advises.

He invents a game that involves putting his beez over your head and letting him find you.  "Last time," I smile and submit.

And then he suggests: "How about last time again?"

JEB

(Hug)

She's in my lap when he pauses to hug her, gently, from behind, and even though she can’t squeeze back it makes her happy and, to him, that counts.
I watch them and, while he stands on my toes and she rests in my arms, I sense my own heart beating in three bodies at once.
JEB

All Love

Our society esteems men who draw large pay checks and hold positions of power, men who earn advanced degrees and who drive fancy cars, but perhaps the true measure of a man is how many board books he can retell by heart, the level of patience he shares with a two-year old boy, his ability to deal with the impending death of his daughter.

I watch him transition from trying to be her father, to needing to be her nurse.  The role is not easy, and it may get harder.  I can't imagine anyone else loving her so well.
I watch him create a relationship with his son, built on bedtime routines, shoulder rides and cartoon characters, full of songs and tickles, dirt and trains.  I can't imagine anyone being a better dad.
I watch him, a sideways glance turns into a rapt stare, and I feel part school-girl smitten, part proud adult admiration, all love.
JEB

The Nature of our Normal

We seem to have fewer pictures this season.  Instead of photos of the kids at the pool, I'm more apt to regard the experience itself as my souvenir.  The experience, and the effects -- wet towels over the rail, chlorine-scented curls and light tan lines remind me of family fun.  Interesting, though, how the nature of a normal day is the first memory to fade.

A snapshot of normal, this week:
We position thick foam to fit the wagon bed, layer blankets on top, rolling one end to make a pillow for her head, the other to cushion her feet against the edge, the rail having been removed to accommodate her length.  We talk to her on the way, telling her we’ll listen to music and Tucker will dance with friends, she’ll hear familiar voices there, and hold new hands too.  She smiles. A lot, actually.  Children peer over the side, curious. She can’t see you, but she can hear your voice. You can say “Hi, Celia" or touch her hand.  Oh look, you made her smile again!  We repeat the explanation as they gain confidence; they ask, and we answer, more questions.  They return throughout the lawn concert, most saying goodbye multiple times when we need to head home.  Tucker leads the way, whispering quietly just blocks from our house, My had fun at the library.

There are more things I’d like to tell, so many stories I do not make time to record.  The way Celia's laugh remains one of the only things that averts Tuck's attention, causes him to slow down.  Or how, on a day just before noon of the year, gray clouds pull apart like theater curtains, revealing blue skies and a sun so radiant it dries out the soggy ground and we head out, again, a list of treasures to look for around the neighborhood.  And about the things Tuck says -- shaking hands of new friends with nice to meet you's, picking flowers for guests (a sweet gesture until he throws them toward the recipient and says fetch), turning over earth to find big bugs and telling everyone Daddy got all the crocodiles from under his bed and took them back to the zoo.

The moments are many, especially compared to pictures and words.  I am hardly capable of capturing them all on paper, preserving each on film.  In the summer there is so much I like to do, and see, that I don’t make time to tell so much.  I do hope that some of the normal stuff sticks with me, though.

JEB

In the Summer

There are margins in the summer, moments that can be filled with flip-flopped walks, fresh fruit breakfasts and slow second cups, shared mid-afternoon siestas, chimenea chats on a darkened patio.  Under a warm sun are periods of time when laziness finds respectability, when it's easy to remember how good it feels not to be so busy that all you end up feeling is tired.  In the summer there are days that don’t have to be filled at all, that end up spent in the most satisfactory ways.

JEB

Most of the ABCD Song

Tucker learned the alphabet sounds right before Easter. We hadn't tried to film it till recently, and although he can do the whole thing, apparently trying to catch birds is far more fun than actually finishing the song...

There she is.

When Tuck has misplaced a toy -say, for example, the rock Poppy sent him that he cannot sleep without- he'll ask "Where is my rock go?"  And when he finds it, he sighs, "There she is."
He dropped coins today, several of which rolled under the couch.  As he collected them, he cried, "There she is.  There she is more."
Lots of people affectionately refer to inanimate things as female - boats, cars, drills, grills...  We're pretty sure Tuck uses the feminine pronoun as a result of asking about Celia.  In the morning when he wakes up, he needs to find her.  When he comes in from playing outside, he wants to know where she is.  When she's with aunts or grandparents over the weekend, he likes to keep track of her whereabouts.  Where is she? and There she is! are part of his everyday lexicon.  Although it's not accurate, or appropriate, I cannot bring myself to correct him.  I like the way his words make me think she is everywhere.  And I kind of hope he says it that way forever.
JEB

For other men who might be interested in keeping Celia with them everywhere they go, CaleCamo released a new design just in time for Father's Day, and they're still donating to BDSRA for all sales that reference CELIA through June 12th.

Today

I think ahead and wistfulness bursts happy bubbles and the constraints of time, accompanied by guilt for wasting it wishing her well.
I think back and find it difficult to reconstruct that period without contaminating the memories with over-sized regret that gushes into now.
My heart lurches in circles looking for a way out of those thoughts.
So I think about right now, and am grateful for beauty in another ordinary day.

JEB

There's a new way to help BDSRA, through June 15th.  Check the "Current Fundraisers" tab for details.

Fro Yo

Warm sunshine drips through holes between clouds while porches begin to blush with geraniums.  Midday heat bullies us inside for a sweet snack, and if I didn’t know better, I’d say there’s just a hint of fantasy churned into the frozen yogurt we find.   Combined with a few blueberries, some crushed Reese cups and a sprinkling of Nerds we have ourselves a little celebration of summertime.

JEB

Hospice Spot

WSYX ABC6 On Your Side Top Story - Big Hearts of Children's Hospice

Raising Awareness (and raising empathetic children)

Celia is lucky to have so many friends who give voice to the fight against Batten Disease. 

We are fortunate to know so many of you will, too.  Because it's Batten Disease Awareness Weekend, we ask that you consider telling someone Celia's story.  Also, please consider participating in any of the following fundraisers:

June 12 -- until then, order jewelry from CaleCamo and 20-25% of your purchase will go to BDSRA for research.
*To read about promising research that has finally reached clinical trials and has been funded partly by BDSRA, go here.

Indefinitely -- order the Sweet Celia headband from Maya's Curls, and thirty percent of the sale will benefit BDSRA.

Indefinitely -- order Celia's Cardthartic card and profits will go toward infantile Batten research.

through mid-July -- follow Noah Coughlan as he continues to run across the country promoting awareness.  Pledge per mile this weekend, if you can.

July 30, 2011 -- walk or run in the Heart of Ohio 5K/10K/1M event in downtown Columbus.  HoO promotes numerous Ohio-based non-profits and BDSRA has been invited to participate this summer.

October 15, 2011 -- bring your pooch to the 2nd annual Barkin' for Batten Dog Walk at Hannah Park in Gahanna at 11:00 am.

November 2011 -- join us for the 3rd annual OSU MICU's Walk for Celia at Antrim Park, near Worthington.  Exact date and time to be determined.

Brooke, Tuck, Luke, Noah and Molly's Awareness shirts courtesy of Be So Beautiful Children's Gifts.

Thank you for helping us extend the reach of recognition for this disease.  We know that love and compassion motivate your sacrifice.  And really, whether it's a sacrifice of time or money, many of you have given so much on behalf of our daughter.  Know that through your giving we hear echoes of hope.
JEB

Edited to add: ABC6 plans to run Celia's Hospice piece tonight at 5pm.

C&T

The differences between them open up, petals unfolding one by one.  Even when I try not to notice them, they're there, the disparities expanding beyond my own imagining, the siblings not sharing much of anything like the same stage of life.

She would have been great, too, I'm convinced, but for the build up of proteins in her brain, beginning even as she burrowed small and silenced in my womb.  Silenced again, I speak to her in kind, the second language of my motherhood.  I carry some fear that she'll think, in whatever way she thinks, we have given up on her.  And I quietly promise her that we haven't.

When he looks at her a universe of sorrow, wide and dark, dwells in her daddy's eyes.  A lifetime imagined there, and then another more sober one constructed gradually of the realization that this is, in fact, her fate, that our daughter's life will not be long.  Yet his eyes make the same wordless promise.

And as each day is lived for the first and last time, her brother demonstrates, over and over again, that we are all more than the first different thing about us.  Even though her vitality fades, she will forever play a vital role in his story, will always be a silky shadow stitched to his feet.  They do not share the same stage of life, but they share things beyond milestones and promises.  He tells her in his own way that she is special, that she is great, and I am convinced she knows.
JEB