These two boys are my heart's helium.

             Thank you for the photo session, Cherie!



Not What it Seems

 Celia, still fairly newborn, 3.2007

Batten Disease is, arguably, one of the ugliest things the world has ever seen.
But she's not.
It's amazing, sometimes, how far removed the name of a thing can fall from the thing itself.



In the Air

Tucker and Colby and I took a walk today.  On porches were perched pumpkins, prepared to welcome beggars later this week.  We stopped at the bottom of the hill, to swing at the park and to eat grass.  The sun was shining and the leaves, at their peak, fluttered around us like golden glitter.  It was palpable, the sense that the end of October is near.

Trick or Treating is not on our family's agenda this year.  Tucker has a costume, and we may put it on him, if we need another excuse to take pictures of him.  And we could dress Celia up too, like WonderWoman or a butterfly, like an astronaut or a lady bug.  But we won't.  It wouldn't matter what costume we chose for her. She will fly.




Wishing we could pull one out of a hat.

(both photos of CEB, fall 2007)


Sun and Wind

When we sit together, and she is calm, I bask in the… togetherness.
I massage her hands gently, willing each finger to rouse. I press my lips to her cheek.
Like a strong fall wind, the kind of gust that rattles the leaves from the trees, her life will have been brief but powerful.
I take in the smell of freshly shampooed hair or of sticky grape medicine, depending on the time of day, wafting from her idle body.
Like Colby – lying by the window doing his best to soak up autumn sun, perhaps imagining if he absorbs enough now it will carry him through the winter – I do my best to soak up all of her, realizing it will never be enough to last me through the winter, a lifetime of winters.

But there will always be gusts and golden rays, there will always be glorious moments, so there will always be her.



From Italian toccare, "to touch," a toccata is a virtuoso piece of music featuring lightly fingered, fast moving passages, generally emphasizing the dexterity of the performer's fingers.*

Widor's Toccata is a long time favorite of ours. Listening to the fury of an extremely talented organist power through this masterpiece, you get a good idea of what a grand pipe organ is capable of. Also, if you're like us, you get goosebumps. Every single time.

Tucker's "Tuckata" may not be lightly fingered, and it may not give you goosebumps. But his music touches us... he's played right into our hearts, making them swell just big enough to bump up the corners of our mouths.

Andy & Jenni

*abbreviated definition from Wikipedia


Beauty and the Best


Twenty Seven

This guy may be Tressel's first verbal commitment for the class of 2027.  Can you hear it now, "Touchdown by Tucker Betz"?

Thanks in advance to Eddie George for unretiring jersey number 27.  Tucker needs a shirt.

Tucker is prognosticating his own 2031 NFL draft pick - number one.

Or, if Tucker decides not to play football, that's fine.  He can dot the I.
Andy & Jenni



This time last fall, Celia started school.  It was suggested that she might benefit from more socialization with peers.  Maybe she didn't point because she didn't see other children pointing.  Maybe she would draw and stack blocks and start talking again if she saw other children do those things.  So she started going to a fabulous facility, one day a week for two hours, as part of their Parent's Day Out program. 
But she didn't point, and she didn't regain speech.  And although she tried to keep up with the other toddlers and although the teachers were good to her, her differences became more pointed.
Celia - first day of school - Oct. 2008

Celia only went to school five times.  She didn't get to make friends on the playground.  She'll never do a book report or trade items from her lunchbox, she'll never get to struggle with algebra or decide whether to try out for cheerleader or join the track team.  When I start to think about the things she won't get to take part in, the things we'll miss out on doing with her, I look at her and she points me back to the realization that if it weren't for her, we would have missed so much.  Not academic lessons, but there are lessons and they have meaning and we are learning.  Plucked from "normal life," on crooked paths and from different vantage points, we're looking and listening and trying to learn from what we've been given.  And we are not disappointed.



Bedtime Benediction

May peace take refuge here and may sweet dreams encamp around us.
May we be grateful for the blessing of today and the hope for tomorrow.
May moonbeams cover us and may sleep curl up next to us tonight.




I can do this.  The battle cry, feels like pressure to be more than I am.  But I don’t want to.  The childish maxim, feels like permission to give up.  Neither one is right.   
Thank goodness we aren't doing it alone.
CEB October 2009
Sporting a sweater her daddy used to wear



Brought to you

by the letters O, S and U.

And by the talented knitting fingers of Grandma Jan...


Socks Off

At seven months, he's approximately nineteen pounds of smile, eyes, drool and thighs.  With hair the color of dishwater* and two new teeth like little cubes of sugar, he laughs in place of language.  After several days perseverating on pulling up, he's a pro.  And, he's always pulling off his socks.  Bet he'd charm yours off, too.

* A few days ago, I described Tuck's hair as "dishwater" colored.  G'Ro disagreed, said that implied it's dull.  She's right, it's not dull, but it is the color of dishwater.  Shiny dishwater.  Put that on a box, Clairol.


It's not Eerie

Their resemblance. But it is noticeable.
Now that it's October, and Tucker is wearing the same little Halloween sleeper his sister wore, we recognized another opportunity to compare:
She is sweet as candy. And he is such a treat.


Joyful Noise

Joyful Noise was one of my FAVORITE books to use with fifth graders. It's a book of poetry, about insects, meant for two readers. By design, two columns of verse on each page allow children to alternate reading aloud about things like a love affair between two lice and crickets eating pie crumbs. The book fit right in with the fifth grade life science unit, and was a super way to integrate literacy.

I wish I could hear Celia and Tucker reading books together someday, hear them hold conversations, share riddles, sing duets. I wish for lots of things that will never be. But one wish has been granted recently -- our house is filled with baby laughter again. And that is a joyful noise!

(Apologies for the video quality - the videographer was also playing the role of tickler, and is obviously better skilled at one than the other.)


Lucky Stars

If we were using sticker charts to track Tuck's development, if his achievements were documented with gold stars, we might be able to share things like:

Archery: five stars
If my shirt were a target for his digestive arrows, Tuck consistently hits the bullseye.

Sleeping: three stars
Tucker knows how to sleep well.  He can do it. But he needs practice. We're working on bribing him with the promise of unlimited texting and his own Facebook page. 

Eating: four stars
Although he mastered the mouth to nipple union instantly, he didn't like his first morsel of chocolate cake.  Clearly, there is room for progress here.

Cuteness: five stars
He makes baby kittens jealous.  And furry bunnies holding hands and sliding down rainbows carrying buckets of sunshine have nothing on him.

But we don't do sticker charts.  Although, we can say with confidence, Tuck puts stars in our eyes.  His future is bright.  At least as a cute archer...



Falling Up

CEB Fall 2008 

The earth is spinning, the seasons changing, leaves falling.  The days grow shorter, in more ways than one.  Despite her tremendous will, her perseverant effort, there are days she cannot drink, cannot coordinate her swallowing muscles.  Days when the threads that tether her to this world break at a faster rate.  It’s a tug of war, and heaven is winning.