4.28.2010

Tummy Tuck

4.27.2010

Life is Art

Blogging lets us, for posterity, paste words and photos together in combinations we might not see if we didn’t make the time to reflect and record.  Blogging lets us paint a picture, our lives a masterpiece, the screen a gallery.
And by masterpiece I don't mean some hallowed museum piece. Sometimes we use decorated words strung together in thoughtful eloquence. Sometimes we hide behind vague metaphors, writing in circles and shadows and outlines. Sometimes we share photographs worthy of frames. Sometimes the pictures are hard to look at but speak unutterable truths.  The blog may not follow the formal conditions of beauty and composition and our story is certainly not pretty, but there is art in living.  In our family, life is sketched in and sculpted around and refined by love, and that's what qualifies as our masterpiece.
We want the love to last.  Writing it down here is a hopeful guarantee that in some way, it will.
It's been said that happiness makes for dull artistry. And if you look throughout history at great works of art, the idea seems quite valid.  Some of the best paintings and stories and songs seem to be the result of seasons of depression, sorrow, heartache. I've said before that I credit grief with introducing me to my best writing, with helping me ferret my truest emotions and with motivating me to spill them somewhere.  Here. 
But I'd be lying if I didn't say that I'd rather our story were dull, that our lives were nothing but boringly happy.
Our lives are messy.  And they are beautiful. 
JEB

4.26.2010

Attached

When I stop myself from rehashing the past and rehearsing the future, when I hold my children close and barnacle myself firmly to the present, I remember just how fortunate I am.
JEB

4.23.2010

Early Bird



Although not particularly interested in "getting the worm," he rises early.  EARLY.  And as the sun peeks over the horizon, he sings from his crib.

Personally, I'd prefer mornings that started later, but there doesn't seem to be a snooze button on this boy who wants breakfast.  And really, given the choice, I'd pick his warbling over a late wake up call.
JEB 

4.21.2010

To Grips

When I press my head to her chest she provides the simple beat of her heart to measure time. With each pulsation I’m reminded that what I’m doing matters.  I'm where I should be, my conviction strengthens.

Having once inhabited my body, I know that part of Celia will always live within me.  We're bound forever by life’s unfortunate affinity to pair the penalty of coincidence with love of a life-altering magnitude.  There may be a place deep inside my cells where memories reside, a place for today's struggles to become tomorrow's nostalgia. And at that level, far beneath conscious thought, a place she'll always, always be. 

When I cover her thin hand with mine, I hope to feel the blood running below her pale skin. I rub my thumb over the soft lines of her palm, stroking into her grasp an apology for her fate and a gentle goodnight.

JEB

4.20.2010

Carry On

The British government, upon the outbreak of WWII, commissioned posters to be distributed throughout the country as a means of allaying public fear.  Three different posters were produced and while the first two designs were widely distributed the third poster, simply bearing the words 'Keep Calm and Carry On', was reserved for use only in times of extreme crisis.  Although hundreds of thousands of these posters were produced, only a handful were ever displayed. 
We framed one recently, and hung it in our kitchen this week. 

Since then, Tucker threw a bottle of red nail polish on the earth-toned kitchen floor, and although we acted quickly and although the slate and the grout are sealed, there will forever be a spot (albeit one of the nobody-else-will-notice variety).  I may or may not have kept calm as I tried to clean up the nail polish.
And then yesterday Andy dropped a bowl of Pad Thai chicken.  The bowl didn't break, and the dog took care of most of the mess, but we may or may not have both lost our patience and our appetites.

Now we know, WE KNOW, these things do not qualify as crises.  And far more often than not there's a happy huddle of souls crowded around our counter top.  Like most homes, our kitchen is the hub of the house, the place where Celie learned to make guacamole, where kisses are sent and received through the back door panes.  It's the place with the fewest seats and where, inevitably, the most people congregate.  We make some messes and a lot of great memories in our little kitchen, not to mention some pretty good meals.  Our relationships strengthen in these incidental moments when it seems like not much is going on and yet so much is.
JEB

4.18.2010

Goodness

We've been surrounded by so much goodness.  Our whole lives have been, in general, full of mostly gentle, happy times.  Take, for example, our wedding.
Good people, lots of them.  And a good time.

Currently, good may not be the best descriptor for our lives, but woven together with the not-so-good is really so much that is.

Take, for example, Beads for Batten.
Jeri Allie deserves credit for coordinating details that made our wedding live up to our dreams, and next Saturday, April 24th, she is hosting "Beads for Batten" in Gallipolis, Ohio (340 Second Ave, That Special Touch).  Beads will be sold for three dollars each, and will fit Pandora and Trollbead bracelets.  One hundred percent of proceeds from the sale, from 10am until 3pm, will be donated to BDSRA. 

We have been shown such good care, such good care that when we think about what a painful time it’s been, when we sift though the past year or so, we remember all of the good things, all of the loving words, all of the lavish generosity.  And, goodness, "thank you" just doesn't feel big enough...
JEB

4.16.2010

Alpha

For nearly nine years now, when Andy has wrestled with Colby, he always, invariably, never fails to pin the dog down and ask "Who's the alpha male?"  And Colby knows who's boss.

Andy and Tucker wrestle too, but I've never heard Andy pose the same question to Tuck.  Perhaps it's because Andy knows the answer.

He's mighty, my T.
JEB

4.14.2010

Day Trip

We took our first trip to the zoo as a family of four today. Personally, it was a breakthrough. Our time at the zoo embodied the type of activity I thought we would never do again after Celia's diagnosis. She used to be too uncomfortable. I used to be too sensitive to have her out with us, far from home and away from her medications.
It was safe at home, and our self-imposed solitary confinement kept us (read: me) out of the curious eyes of the public. You never know how it feels to be stared at until you experience it for yourself... and it doesn't feel good. I imagine most parents of chronically or terminally ill children would agree. And most might also agree that you eventually just get over it. You get over yourself. Celia doesn't know or care that people look at her and wonder what is wrong. And I don't care any more either. Our sanity is more important. Our need to do things as a family is more important. My ego can sit on a shelf.
"My daughter is terminally ill. Yeah, it's a terrible disease called Neuronal Ceroid Lipofuscinosis. You can learn more at www.bdsra.org. Now can you move over so we can see the bonobo throw some poop? Thanks."
This coming from a guy who doesn't like people at work asking him about what he's eating for lunch! But I'm learning to get over myself. Just another life lesson via my sweet little girl...

The real fun today was watching Tuck on his day trip. These photos document his first Hendrixian ride into the purple haze. He sampled the mushrooms in the "My House" adventure. I think that red one might have been "magic." Or maybe the camera was in the wrong setting....
Andy

4.13.2010

Affirmative

Tucker has been signing "please" for several weeks.  Now he says "yes" while he signs.  Yes, please.

When we ask whether he'd like more peanut butter his sweet reply is irresistible.
When we check to see if he'd like to go down the slide again his polite confirmation sounds like poetry.
When we inquire about music or dance his favorable response is as seductive as an exotic accent.

Sometimes his hand flaps at the side of his chest, slightly missing the mark, and his "yes" is clipped and hurried, a let's-get-on-with-it insistence that, well, of course he wants to play in the bathtub.  Other times his fist is closed and his motions smooth, but his voice is breathier, a result of the effort required to walk and talk at the same time.  But always, always his "yes, please" makes us smile.  Big from-the-inside-out smiles. 
 
And always, almost always, his "yes, please" is cogent.  We know that we have to be careful not to spoil Tucker.  There are things that we don't let him do.  Like jump off the front porch and chew on the blender blade.  (Interestingly, these are not things he has "yes, please"ed for our permission before trying, but had he, we'd have said "no".  Of course we will say no.  Sometimes.  Probably not often enough.) 
But he saves us from wishing our own lives would speed by so we could, someday, hopefully, catch up with her.  We feel graced by his presence, spoiled to share life with him.  His "yes, please"es - and our reactions to them - are affirmation that the part about not spoiling him is not going to come easy. 
JEB

4.11.2010

Now and Forever

When asked recently to explain how we manage our emotions -- what it was like to celebrate a birthday when it was probably her last, what it meant to honor the Easter holiday and all that it promises, how it feels to watch him fall in love with his older sister -- we couldn't articulate a response.  It's difficult to explain how the holy and the humorous, the silly and the sad, mingle in our days.  Does every parent know what it feels like, at the tired ending of a too long day, to hope for another just like it? 
Celia, fall 2008

We're often - almost always - overcome with emotion, unable to parse them all out.  Hope and panic and confidence and despair all spurn from the same place, swerving like mountain switchbacks.  We catch ourselves being cautious with the best feelings, subconsciously afraid to experience too much joy, as though there's a meter inside that will only allow us so much happiness before a warning registers.  Even the small, daily details are associated with heartache and hard edges.  But we line up the merriest pieces -- her cheeks the pink of ballet slippers, the warmth of her breath, a pleasant reaction to a bite of rice pudding, everything about her a thousand shades of beautiful -- and arrange them, permanently, into our story.  As much as she is full of beauty, our lives must be too.  Now, and forever.
With her diagnosis, mortality was forced into our field of vision and time bent away from our favor.  We can't postpone our lives, our ability to be happy, to a future date.  Life should be lived now, good now.  And we try to make it so, with her help.
JEB

4.09.2010

The Enforcer

When one of the men working on our landscape project knocked on the door yesterday, Tucker helped Andy answer it.  Tuck happened to be carrying a rolling pin in each hand. We're hoping the guy won't be afraid to come back...
JEB

4.08.2010

Eternal Flame

Her hair is like an inferno, strands blaze and curls erupt.


I glimpse her, glowing, and as if it's feeding the fire, the the air is sucked out of me.
Every burning desire I had for my daughter flashes before me.

I don't have to look at her to feel the love.
Every fiber of my being kindles fiercely for her, an eternal flame.
JEB

4.06.2010

On Growing

Watching him grow, watching him scurry and speak and swing and smile, every day - for the rest of my life - is the best future I can imagine.  I'll admit, sometimes it's hard not to mourn his babyhood, not to acknowledge a twinge of sorrow as each development pushes that time further into the past.  
But then I watch him, and I wonder at the way my love for him grows faster than he does.
JEB

PS -- If you haven't noticed the new "Pepsi Refresh" note on the left sidebar, please take a minute to learn about Project Giggles.  The idea, hatched by one of Celia's special fairies, could provide funhouse mirrors to camps for kids with serious illnesses.

4.04.2010

Easter

It is all about love.
video

4.01.2010

I Look at Him

and could swear my heart grows wings.

JEB