Loud and Clear

All the words I wish she were able to say clutter the space around me and distract me from what she's telling me.  If I listen carefully, in my heart I can hear her for what I believe she says.  And I love her, too.



Mercury Rising

For a minute, their cheeks were like magnets.  And they held hands.
Our happiness thermometers rose like magic.

But then he pulled her hair.  And she hit his head.  And he chewed on her hand.
And, they both became a little heated. 

But not before the moment was frozen...



F is for..

F is for fairy.  We saw a card recently that put it best: Faeries truly are worth the wait.

F is for favorite.  Our family has long been fond of Cardthartic's cards, but our affection for them has flourished over the past few weeks.  The Cardthartic team has been fantastic.  In planning the fundraiser, they've done some fancy footwork to arrange the perfect atmosphere, to acquire amazing raffle prizes, to ensure that the event will be fun. We're huge Cardthartic fans.

F is for future.  We received a letter in the mail recently, from BDSRA, outlining four new projects focused on developing a treatment for Infantile Batten Disease.  The studies range in approach from enzyme replacement and gene therapy, to new compounds and canine carriers.  This summer BDSRA was able to provide grants to each of the four researchers, enough to carry the projects for six months, but in order to see the studies to completion further funding is necessary; BDSRA needs to raise approximately $100,000 by February 2010.  We are thrilled that Cardthartic's event at the Book Loft this evening will benefit BDSRA and will aide in allowing researchers to continue their work.
A cure for Batten Disease is difficult to wait for.  Our family is not holding out hope for our own little fairy to be cured.  But we'll keep our fingers crossed for other families and for the future, and we'll hope the researchers have plenty of fairy dust in their labs.



Ad Nauseam

I realize that my interest in sharing about my children exceeds almost everybody’s interest in hearing about them. Feel free to move away from this blog and on to the next, or just click that little red X in the upper right corner. Read at your own discretion, by all means. Because if talking, or writing, about my children is wrong, then I don’t want to be right. I’ve said before that Celia deserves to be chronicled in song and legend for centuries to come. The same goes for her little brother. Celia had a rough start to the week. Really rough. Scary rough. But the past couple of days, she's been passing out smiles the kind we haven't seen in what feels like ages, the kind that help us remember she's a child, not a disease, the kind that push away our pain because, if even for a moment, it seems as though hers is gone. She was always such a good smiler.
CEB, fall 2007
And this week, Tucker got his first tooth.  Boy, did he earn it.  It doesn't really affect his smile yet.  He shares perfect smiles in the manner his sister began, open-mouthed and often.  His smile will always remind us of hers.  It's the kind of smile we'll never be sick or tired of.
TEB, fall 2009


Key to My Heart

We were sure she was going places.  Sure lots of doors would open for her.
She has gone places, just not the ones we'd imagined, and she has opened doors, to things we never expected. 
But the one we really wish we could unlock, the one that would reveal that little missing protein, is still shut.
But our hearts... she opened them a long time ago.


A Complicated Kindness

That's the title of a book I've been reading, a novel "shot through with sadness, the spectre of loss, and unexpected humor," the fictional story of a young Mennonite girl.
(I'm not necessarily recommending the book... I've been about half way through it for a couple months now; I liked it, but for whatever reason I abandoned it, and just haven't picked it back up.)
But those words stuck with me because, for us, that's life right now - shot through with sadness, the spectre of loss, and unexpected humor...
The sadness and the loss might go without saying.  But the humor?  Oh, thank goodness for Tucker.  For his copious smiles and generous laughter. He finds humor in the most unexpected places, the simplest things -- the swoosh of the dog's tail, the right toy at the right time, long hair tickling his tummy, getting his behind wiped, for goodness sake, can make him giggle. And when he smiles, we smile; when he laughs, we laugh.

The book title seemed apropos, too, because of the kindnesses we've been shown so often recently. There is kindness here, but it's complicated.  When we're forgiven for being late, or for not returning phone calls, or for canceling appointments and bailing on plans we're shown a not-so-ordinary sort of kindness.  When, during times of recession in our nation, so many people have shared so much with our family, to help us care for Celia, we feel extraordinary kindness.  We see kindness in the faces of so many people who want to help, but they don't know what to do or what to say. When they ask us how we're doing, what they mean is how are we managing to deal with losing our daughter, with lack of sleep, with each other. It's not the kind of question that can be answered easily, or quickly. And it's not the kind of answer most people, no matter how sincere their query, want to hear. And sometimes, most times, we don't even know how we're doing.  But kind people ask, and do, anyway.

There's plenty of simpler kindness, too. Portrait sessions are donated. Grocery gift cards are mailed anonymously. A getaway is arranged.  Hanging baskets are snuck into position on our front porch, friends call to share funny stories because they know we need to laugh, a triathlete races for Celia and a card company raises awareness... And, on second thought, maybe these kindnesses aren't so simple either.  Maybe there isn't such a thing as simple kindness... each kind gesture we're shown feels big and fancy and so special.
Recently we saw an abbreviated list of things that are being raffled to benefit BDSRA at The Book Loft's Cardthartic Event -- round-trip airline tickets, accommodations and spa treatments, photography sessions and greeting cards.*  Some of the items come from people who have already done far too much for Celia and our family, and some of the items come from people whom we've never met, who don't know us, who are way too generous and so very kind. 

Sometimes we want life to be something we can do on our own. Good thing it isn't.  But it's hard to know how to express our gratitude. Friends, relatives, complete strangers have become completely captivated by Celia's charm. And so they do kind things for her. For us. These little (and not so little) acts of kindness remind us how blessed we are to be Celia's parents.  We try not to be sad about things that make us so happy, but sometimes we're so overwhelmed by kindness, we feel sad in the reassuring way that some sadness has.  Sadness can be complicated, too...

*If you'd like more information about the raffle, please visit this page.  Tickets can be purchased in advance, and you do not have to be present to win.



We've been away.  A forty-eight hour escape.  A surprise, planned by family. Childcare and dogcare coordinated, massages scheduled, gift cards purchased, favorite snacks and drinks packed, house cleaning arranged, all by family.  All extravagant gestures.
Sleeping, for NINE HOURS STRAIGHT, felt extravagant.  Can you hear the voice-raised enthusiasm those capital letters suggest? NINE HOURS, internet.  EXTRAVAGANT.
Enjoying meals at a leisurely pace, and conversations devoid of topics like who pooped when, felt extravagant.
Spending the day antique shopping and eating ice cream and wandering through historic neighborhoods and eating caramel apples and flipping, simultaneously, through channels and magazine pages felt extravagant.
The opportunity to rest and reconnect, to romance and refuel, felt extravagant.

And we feel extravagantly loved.
Thank you, family.


Child of Blessing

Child of blessing, child of promise
Baptized with the Spirit's sign.
With this water, God has sealed you
Unto love and grace divine.*
On Sunday, Tucker was welcomed into the church.  He donned the same baptismal gown his daddy and his Uncle Adam and his big sister wore. Each of their initials were embroidered on the slip underneath, along with those of other family members who have worn the dress.
During the service, Tucker was well-behaved.  He smiled as he was carried down the aisle past family and friends, but he did not wave hello to the congregation like his sister did at his age.  One of our ministers invited the young people forward, and allowed the baptism to serve as part of the children's lesson.  She explained that Celia has been sick, and that Tucker would need all of them to act as big brothers and sisters to him.  It was perfect.  He is perfect.
*This hymn was written by Ronald S. Cole-Turner, who was born in 1948 into a minister's family and grew up in Ohio.



To tide you over till we can take time to tell more:

Tucker tasted apples.

Tucker mooned USC.

Tucker may have proposed to Abby.

Tucker tailgated, disguised as Tressel.


Yesterday Tucker was baptized (pictures soon!) and today Tucker had his 6 month well-visit.
He is 19 pounds, 27 inches, and has lots of room for brains in his head.  He sits up and makes the "d" sound and the "b" sound and likes prunes but not carrots.
And he is very, very well-loved.


Full House

We added eight feet to our house this week.  Our home is full of extra toys and loads of laughter.  The Iowa gang is here...  the Buckeyes and the Hawkeyes are enjoying each others' company.  We've had time to sit and visit, to crochet and cook, to make chalk drawings and feed fish in the pond, to throw football and swim and pick apples.  We intend to tailgate on Saturday and celebrate Tucker's baptism on Sunday.  We're so glad the Vaudts are here again.

The dads are happy.

The moms are happy.

The kids are happy.  Well, mostly happy.  We haven't been able to negotiate a photograph of all four of them together because they haven't all been awake/not crying at the same time.  But, in general, they're happy.
And we hope you're happily surrounded by some of your favorite people and favorite things, too.


Earth Angels

Do angels have angels? We think so. This weekend, we got to introduce our angel to one of hers. Celia's very own Iron(wo)man, Mandy, was in town for the Buckeye home opener.  We were thrilled to be able to thank Mandy in person, and to introduce the two lovely ladies.



Can It

Today makes Celia two and a half years old.  Can it be true that thirty months have passed since she was bundled and placed into our arms, since she slid immediately and perfectly and fully into our hearts.

I wish, over the past couple years, I could have captured every bit of her into jars, to line up on shelves for reminiscing in the future.  I wish I could have canned her baby default setting, the one that left her easy to please and thrilled by everything.  I wish I could have poured into containers her shimmering personality, her happy clapping and constant chatter.  I wish I could bottle the way she smells, the way she emanates innocence.  I wish I could preserve the way it feels to hold her in my arms.



Good thing these choking hazards aren't poisonous...


Seeing Things

It's hard to see the big picture when you're inside the frame.
When I step back to examine ours, I struggle to make sense of what I see.  In the very same frames I see both a complete lack of divinity, and a boundless expanse of it.



Off the Chart

truly is a

*Amy Parrish will be giving away $50 gift cards to the first one hundred customers at the Book Loft on the evening of September 26th during the BDSRA fundraiser sponsored by Cardthartic. If you live in Columbus and have a child between the ages of nine months and nine years, and you haven't checked out Amy's new Studio 9 venture, you should.