wH2Oleheartedly

 Without much hesitation, Tuck gave the fountains his enthusiastic approval.

 JEB

Tangled

We can twist ourselves into knots thinking about when she might die, or we can allow ourselves to get caught up in time spent living with her...

JEB

Dirt and Denim

I am not a mom who is fluent in blue and Lego and Tonka and mud. Yet.

But as with any relationship, the reality is that I will learn through experience. 

I want our house to be a place to be, not a place to be stifled or a place to be careful or a place to be bored.

So I welcome the experiences, the chance for him to inquire and explore and the chance for me to learn. 

 I also welcome bathtime.

JEB

The Best Kind of Busy

Walking the dog 
and working in the yard
and enjoying a slider buffet
and playing "night night" with all the best pillows

and ordering sushi
and visiting the polar bears
and snuggling after bath time
and turning everything into a "hat"
and eating popcorn on the front porch...
...leaves us little time to update the blog. 
But don't worry about us, we're finding happy in all kinds of places!
JEB

Clear

These days we go outside a lot.  When the morning sun brushes a wide wash of light across the lawn we go outside, and as the warm air creeps further up the porch each afternoon we go outside.  Sometimes when she's sleeping we let her rest inside and we don't stray far from our own yard.  I wanted to capture this perspective of my little girl, wanted to remember what we see when we peek in at her, curled up on the couch.  So I snapped a picture for the album.

Except it's not clear to me exactly what happened.  I don't fully understand light and angle and reflection, I typically just point our camera at something pretty and press the button.  As I sat here this evening and pulled the photos from the card, her feet resting in my lap, this wasn't the picture I was expecting.  The first one showed up and I saw her tucked into my palm, some trick of physics, and it reminded me of the challenge we've faced in trying to hold Celia with open hands.  We would have preferred a longer term lease, but ultimately, as much as we claim her, she is not ours.  And so we try to figure out how we can hold on to her while we let her go.

I saw these pictures though, and something became to clear to me.  Her feet won't always be in my lap, and my hands won't always feel full, but she'll be here, our girl, she always will be.  She's in the nooks and crannies of me that didn't even exist before she did.  She'll be well-documented in photographs, but she'll also be in the corners of my heart and in the creases on my face and in the crevices of my memory.
Clearly, she always will be.
JEB

Barkin'

I don't imagine there's a single person reading this blog who hasn't already done something for Celia.  You've donated in support of Mandy's triathalon, contributed directly to BDSRA, prayed for strength and comfort, shared kind words and heartfelt notes and extra hands, purchased Cardthartic cards and Dave's Homeroast and Jeri's beads*, delivered flowers and meals and hugs.  You've given us your hearts to borrow while ours were breaking. 
We worry, though.  We worry that we don't appear grateful enough, that everyone is tired of our grief and our requests for continued support of BDSRA.  But, there is no cure.  There is no cure.  We are required to stand by helplessly as our child is betrayed by her body. Raising awareness, and raising money for research, is currently our only defense against the disease.
So, if you're willing to do more, and if you're able to join us, the Batten Disease Support & Research Association is holding the First Annual Barkin' for Batten Charity Dog Walk this weekend, May 22nd at 11:00am in Gahanna.  Visit Barkin' for Batten for more information and/or to register your dog for the walk. Even if you don't have a dog, or you live too far away, there are ways you can help.  Become a virtual walker, consider spreading the news through social media, or mention the event to dog-loving friends.  Know that if you can't help this time, there will be more opportunities.  Until there is a cure, there will be opportunities.  And if we haven't made it abundantly clear, we are SO GRATEFUL for all that you've already done.

We'll look forward to seeing some of you on Saturday.  Colby's dogs might be barkin' after the walk, but he'd do anything for his sister.  And as luck would have it, it looks like someone owes Colby a foot rub anyway...
JEB

*The Beads for Batten sale concluded last week, with a donation - in honor of Celia - made to BDSRA.  Nearly $3800 was raised, and will be doubled by Emma's Hugs and designated for infantile research.  Again, there aren't any words big enough to express our appreciation.

and Repeat

External

Tucker thought it was time to post something.

Much of our time has been spent outside lately, building towers out of empty cans from the recycling bin, and building memories, too.
In the yard we smell flowers together and I feel the graft of our souls growing stronger.
He swings while I scrub outdoor furniture and scour my mind for one more tiny fact to spin a recollection from, sure that something similar was happening this time two years ago.
I watch him throw rocks and try to toss my troubles in conjunction with his release.
When it's time to go inside disappointment settles his lips into a frown and his legs turn to viscous slime.  I pick him up, the warm air clinging to him in a way that reminds me of being little.

Spending time outside is good for many reasons, primarily because my little boy is too big to be inside on the computer anyway.
JEB

Save Second Base

Tucker may not be ready to run the 5K, but Amy Parrish's Komen Columbus fundraiser let him play a small part in the fight against breast cancer.

Visit Amy at her studio on Thursday, May 13th from 4-7pm for your own pink pictures. There are no session fees, no reservations necessary, and $7 from every $10 print ordered will be donated to Komen Columbus.
JEB

To support another cause that hits close to home, consider stopping by the Beads for Batten sale, also Thursday evening, May 13th from 4-7pm in Gallipolis.

Think Twice

Under ordinary circumstances he is not allowed on furniture, but when Colby crept onto the couch this evening I didn't think twice about letting him stay there next to his sister.

And after Celia's bedtime snack, when Colby asked for the remains of her yogurt, I didn't think twice about letting him lick clean the carton.
JEB

On our Toes

He's been saying "dance" for several weeks.  When he hears music, he shouts "dan" and bends his knees and raises his arms and bounces.  He dances in his carseat.  He dances at the library. He dances on his chair.

Even when there is no music, we dance through the days.  Sometimes it feels like the melody is in a minor key, time marked by missteps and strange lurches and dragging lulls. Those are the times we cling to each other, as if hanging on to the bar for balance.  But swaying with joy that is contagious and invigorating, he adds harmony to things, and even through dips and turns I follow his lead to find footing again. 

I find it delightful to adjust my steps to his slower pace.  His curiousity and careful observation help me see things I'd otherwise step on, and together we bump into things I'd never notice through my own focus.  Other times we move swiftly, executing steps with quasi-precision, confident and carefree. We dance through the days, and then the rhythm shifts, my motions feel clumsy, we stumble.  But we’re partners, in a new pattern, and there are still moments of grace.  He twirls me out of darkness and into the sparkling world.
He keeps me on my toes.
My dance card is full.
JEB

The "Beads for Batten" sale continues this week -- Thursday, May 13th from 4pm-7pm, 340 Second Ave., Gallipolis.

Motherhood

There's a special bond between mother and daughter, one that - from the mothering side - I don't feel quite privy to.
I can plant kisses on her forehead and tuck barrettes into her hair, dress her in skirts that will never twirl and take photographs of her that she won't see.  We won't scrapbook or bake or bicker or vacation.
I can feel the ghost of her lips as a kiss on my cheek and hear happy noises that are no longer words, but she can't stretch her arms around me for a hug or reach for my hand to hold.  We will never gossip or shop or sew or negotiate or garden.
This is not an essay about all the things we won't do, all the purported specialness that's been aborted.
It's just an observation about motherhood, a reassurance that she is, that I am, that we are.  Motherhood can't be reduced to one essential experience, and even with all of our won'ts and nevers, there are moments that say to me "this is it."

JEB

For Now

For Now. The words build dread. For now implies the opposite of longevity.
For now though, I love her the way I loved her the first time I looked at her. More. And then I let the words dissolve.
JEB

Plucked

There's an angled patch that sticks up on top, a tiny curl at his nape, and empty spots on both sides that leave him looking like a half-plucked bird.

 It's just one of many things about him that totally tugs at my heartstrings...
JEB

Most of the Time

Most of the time if you do your best and look both ways you will triumph.
If you floss your teeth and say your prayers, you will prevail.
If you stay in school and if you wear clean undies, if you eat your veggies and if you do unto others, it’s safe to hope for the best.  
Most of the time.

 JEB

Dogged

Many dog breeds carry the genetic markers for Batten Disease.  Because canines and humans share much of the same genome, research on canine disease applies to people as well.  Research is currently underway to help dogs and children with Batten Disease live longer, healthier lives. 

In their relentless pursuit of a cure, BDSRA is sponsoring Barkin' for Batten, a charity dog walk, on May 22nd at Hannah Park in Gahanna.  If you live in central Ohio, whether you own a dog or not, we'd love to see you there.  Registration begins at 10:00am and the dog walk begins at 11:00am.  For more details, or to pre-register for the walk, please visit the Barkin' for Batten website.

No matter how stubborn her little body is against the disease, Celia will not survive.  No matter how willful families like ours are in fighting for a cure, we can't find it, or fund it, alone.  No matter how tenacious scientists are in their search, they need support.
Financial support is appreciated, but it's people who change people's lives.  People, and their pets.  Come walk with us, if you're able.

JEB

Last weekend the Beads for Batten event raised over $2000 in funds for infantile research, all of which will be matched, dollar for dollar, through the Emma's Hugs Challenge Grant (see sidebar).  
In addition to the bead sale, on Monday, May 3rd from 4:00 to 9:00 pm, 15% of each dinner bill at Bob Evans Restaurant (Rio Grande, Ohio) will be donated to BDSRA.  To participate, diners must present a coupon.