We've got Spirit

At our house, Fight the Team becomes a lullaby, a mason jar full of poisonous nuts adorns the mantle, and hands in the air aren't as much "so big" as they are  "O-H."  You've seen it done before, arms flying to form the letters O-H-I-O to show Buckeye pride at various locations -- on the Great Wall, at the beach, in Vegas.  Andy got some kids to hold the pose for a photograph during his medical mission in Honduras and we did it several years ago at our family reunion in Wales.  Our most recent attempt, below, may not be the best version of O-H-I-O, but it's ours.  And we're pretty sure Tressel and Brutus would approve.  The lazy O, the one-handed I, we know what they're saying.  It's football season, and these little Buckeye fans have big spirits. 

JEB

Piles

Andy makes fun of me, claiming I may have mentioned our laundry woes once or seventy two times on the blog. He helps with laundry, it's just that there's always laundry to do, so it's on my mind. But this post isn't about laundry piles. And our laundry really isn't a big problem...
I find myself, my handle on things, problematic at times. IQ points trickle out with breastmilk, patience ebbs and tears flow. These things aren't unique to our circumstances. In fact, most mothers of small children can likely relate to fuzzy thoughts and fragile emotions, to problems of varying severities. I'd wager that if everyone threw their problems in a pile for all to see, most people would likely grab their own back. Sometimes I wish we could leave our problems in the pile; not necessarily trade them with anyone, but grab something that seems a little more manageable.
Occasionally people mention that when they face a new challenge, or become overwhelmed by a situation, they think of us, and their perspective is quickly righted. That doesn't make their challenging situation less significant; even when problems are average, they still feel like problems. But we do long for average, for the normal overwhelmed, overworked, overlooked average. The kind of average where laundry piles and dirty cars, home improvement projects and work deadlines, grocery budgets and bad hair days are big problems. Stress is stress though, and everyone's got some. When we find ourselves marinading in stress, short on patience and long on sadness, we slather on some memories of happier times, let them pile on top of each other and release their balming quality.

And we realize, no matter how problematic it feels, how stressful it is, there is no way we'd ever trade this, no way we could leave this in the pile.JEB

One Year

Sometimes anger spills out of my fingertips and spreads across the computer screen. Sometimes, sadness. Sometimes, boastfulness. Sometimes I hit publish, leaving the words for the world. Sometimes, I press delete. Either way, the words get out.
Our blog is one year old today. Last year, when we began this blog, the words we shared told how we used to play in the backyard pond after dinner. We shared words and pictures to document how we made s'mores and mastered utensils, how we went to Cosi and to football games. And then we noticed something wasn't quite right, but we didn't share much right away. And then we realized something was wrong. And we started to share more.
Our blog has changed a lot in one year. Our lives have changed even more.
We don't get to share the things we wish we could share, no funny stories about what Celia did or said, no trips to the playground, no riding trikes, no song or dance. Sometimes we may share too much. But writing helps us - it helps us through rough times, and it helps us remember happier times.
Knowing that so many people care enough to check in with us helps a lot, too. It helps to know we're in the thoughts of so many who read, and we cherish your interest in our lives. Some of you chime in, or e-mail responses to our words and images. Some of you talk to us in real life about our posts, about our kids. But we don't write to garner comments or spark conversations. We write because it helps. Cradling our experience in words is somehow therapeutic, healing as we record.
Thank you, dear blog readers, for cradling our family through such a difficult year. Your eyes and ears, your arms and hearts, your kind words spoken and thought... sometimes that's good therapy, too.

Four hands, April 2007

JEB

In Good Humor

Some days the best thing to do is just grin and bear bare it.
JEB

Awestruck

If finding excuses to share photos of one’s children were a contest, I might be a winner. I tend to believe that if you’ve ever looked at a picture of this girl, or even better - held her in your arms - and you haven’t felt awed, you may be suffering from some sort of awe-deficiency. Or, it might just be that I feel this way because I'm her mom... Regardless, it turns out I’m not the only one who finds Celia, and Celia’s photographs, worth admiring.
Cardthartic, maker of Passages greeting cards, contacted our favorite local photographer, Amy Parrish, with a request for permission to use one of her images of Celia on one of their cards. We were flattered. And then Cardthartic wanted to share Celia's story, wanted to help raise awareness of Batten Disease, in their catazine (the company's catalog/magazine of products and background stories). We were honored. And then they started planning a reception for Celia, where half of the money from each Cardthartic purchase will go directly to BDSRA. We were again flattered, and honored. And we were awestruck.
The Book Loft, in German Village, sells Cardthartic cards and will be hosting the event on the evening of Saturday, September 26th. From what we've heard, there will be snacks and drinks in the courtyard, and plenty of lovely cards for sale. If you live close by, we invite you to join us. And if you don't live nearby, rest assured that we'll share details of Celia's card on the blog at some point!

JEB

At Least

When he's not working on calculus or negotiating peace treaties, when he's not writing prose or solving world hunger, Tucker is busy. Busy reading books, and playing in the pool, and feeding himself cereal.

This kid is at least sixty three kinds of brilliant. At least.

JEB

Forward

Sometimes the relentless soldiering on of the rest of the world hurts my feelings. Clocks tick. Holidays and celebrations, oblivious to our circumstances, come anyway. Another school year begins. Mail is delivered. Laundry piles grow.
I don't want sympathy. I just want Celia. I want her back and I want her forward.


JEB

I'm on a Boat

If you don't "get" this, you probably shouldn't Google it...

A&J

Unputdownable

Road Trip, March 2008

Ever read a book that was so good you didn’t want to put it down? Sometimes, when I’m in the middle of a really good book, and sometimes even with a mediocre book, beds go unmade and meals go unprepared. I may have needed to sprinkle goldfish crackers on the floor once, to entertain my toddler so I could read just one more chapter… (They were whole wheat crackers, and the floor was clean. And I only did it once. It was a good book.) Sometimes books are just unputdownable. Sometimes kids are like that, too. They keep you from taking care of chores, because you let them. They distract you, allow you to escape to other worlds. Celia is better than the best good book. And sometimes when I'm holding her, I realize she has revealed many secrets and imparted much wisdom, even though it seems she's wordless, unopenable. Unopenable, maybe. Unputdownable, for sure.

JEB

Golden Days

A picnic. A breeze. A day at the beach. Our summer has not been.

These things denote ease. Our lives are not easy.

But, some days, things are okay. Occasionally, things are almost good. And once in a while, we have moments layered with treasures.

JEB

On the line

Hangin' Out

Laundry Day

Linebacker (My favorite)

Or how about just plain cute? Thanks for the great idea, Bridget.

Andy

Disclaimer: No babies were harmed during the photo shoot. No tongues, fingers, or lips were pinched either. Trust me... it was really safe.