Thinking of, and Thanking, Heaven

From where I stood at the kitchen sink earlier this evening, trying to rescue the basin from sippy cups and syringes, I watched Tucker playing the piano.  It brought to mind one of my favorite pianists, now sick.  Sadly, chances are he and Celia may arrive in heaven around the same time.  I washed plastic parts through teary eyes and hoped that, someday, she will have as much fun singing with him as I did.  I envisioned her standing behind him, belting out showtunes while he bangs on keys, the rest of heaven drawn to listen. 

And just a few minutes ago, I found myself in front of the washing machine, stain spray in hand, marveling at dirt on brand new pants.  Tucker donned his Easter outfit for pictures outside today, scooting across rocks and crawling through mulch and falling in the grass.  I've used plenty of Oxy Clean and Vivid and Spray & Wash over the past several years, but never have I needed to scrub grass stains.  I may be the only mother in the world who felt grateful for today's task, hesitant to rid the evidence that my child can run and play, that he can, thank heavens, get dirty.
JEB

Trite but True

Some people only dream of angels.  We're holding on to ours.

 JEB

Homing In

 

After a brief (and glorious) escape from reality, we're back and ready to focus on two very special little people again.
JEB

Baths and Books

and beets and balls and blocks and bananas and boats and bears.... and that's only the beginning!
(of adventures with Grandma Rosie and Grandpa Rod)

Budding

Darkness sinks slowly now, and tulips tilt their heads toward the sun.

It was this time of year when Celia's language began to blossom.  Her vocabulary grew while the forsythia burst into clouds of yellow.  She collected words and shared them like a bright bouquet, her voice as sweet as honeysuckle.

This spring Tucker talks.  He's been sprinkling "come" and "cup" and "dog" and "go" into conversations.  He disperses most words randomly though, and we smile when we catch one unfolding.   

All around us things are blooming, and we're grateful to participate in nature's renewal.
JEB

uʍop ǝpısdn

Tucker pauses, occasionally, to look at things from a different perspective.  He's wise, our littlest one.

Our lives haven't felt "right side up" for some time now.  Two words, new to us, left us feeling dizzy, and despite plenty of time to get accustomed, our reality still takes on the dimensions of a fun house mirror.

The upside though, and there must be one, is that along this slippery, crooked path there are lessons.  Although we would never volunteer to traverse this slope, we've learned that it's the descent that forces our eyes upward.

JEB

Tuck of the Irish

Or Welsh.  Or German.
Or whatever.
He is a pinch of trouble and a pot of smiles.
He is twenty five pounds of solid good fortune. 

JEB

Boundless

It's an ordinary day.  As ordinary as can be under extraordinary circumstances.  A Tuesday full of scrambled eggs and toast, board books and ball poppers, dirty dishes and clean laundry, medication and meetings, and thank goodness, naptime.  An unstructured structure that living within the confines of dying creates.

Days like this feel all at once too big and not nearly big enough.  I find myself unable to restrict my mind, thinking about a little girl and God and everything in between.  About whether it's possible to feel disappointed out of proportion.  About words like orphan and widow and about what you call a parent who's lost a child.  Other than sad.  About patches of blue covering the sky and blades of green shooting through the dirt and about how sometimes it all just feels like false advertising.  About the unpredictability and unfamiliarity, bundled together and coated in fear, and about how much time we have left.  About how ironic it may seem that looking at her can feel like glimpsing perfection.  About how she has stretched our capacity to love.  

It was never conditional or fixed, but it has never felt so big.

JEB

Soaking

Things are soggy in central Ohio.  But surely all this rain is a harbinger of spring.

Celia had a good week.  She's been smiling and laughing the past few days.  We're not sure what triggers the giggles, but we're almost as fond of them as we are of her.  We've been trying to soak up her happy noises, hoping to absorb her laughter in order to walk around with it for the rest of our lives encased beneath our skin.  We've been holding her close, so close I watch for Andy to squeeze right through her and come out the other side.  When she's in my arms I wish for her to melt into me like the last signs of snow in the yard have disappeared into the soil.  I try to saturate myself in the very moment, knowing it's one I'll need to hold on to when I can't hold her.

And Tucker remains a bright spot on dreary days.  He absorbs so much, and races around jabbering like he's sharing a powerpoint presentation, a new topic every few minutes.  Like a bee among blossoms he busily tinkers, running commentary always spilling from his lips.  Puddles of rolling pins and kitchen rags and plastic measuring spoons flood our floors and make us wonder if we missed the tornado sirens?  Really, though.  We've been immersed in his presence for a year now and love the way he's seeped so perfectly into our lives.

What a privilege to pour our love into these two little souls.  What a blessing to soak up their love in return.
JEB

This

This is word number four.  He thises his way through the day, all day long.

This.  His finger points.
This is an orange.  It is round and yummy.  Would you like to hold this orange?  Oranges grow on trees.  We can eat this orange together.

This! This!  He insists.
This is your sister's medicine.  I'm sorry, she cannot share this.  This medicine is for Celia. You may have this cup.

This?
This is a tulip.  Smell it.  Be gentle, please.  Tulips are flowers.  This tulip is pretty, isn't it?

This.  This.  This.  He is persistent.
Yes, I would like to pound this wooden peg with you.  Let's use the hammer.  Can you help me hit the blue peg?

This! 
Tuck, this is a baby doll.  This baby was your sister's.  Can you kiss the baby?  Oh, so nice!

This?  He wonders.
This is a CD. Where did you find this?  Let's put this back.  CDs are not toys.  Thank you for helping me put away this CD.

And THIS.  This, the word reminds me, is why I am here.
I LOVE this.
JEB

Vitamin D

At lunch time, sunlight poured in through the dining room windows and fell, elegantly, on her lashes.  We decided to get outside, to take a walk and to soak it up.

Outside, sunshine kissed his cheeks and glossed the whorl of wind-blown hair on top of his head.  She rested, warm and heavy-eyed, in the stroller nearby.  And we decided that we'd made the right decision. 

The fresh air seems to have exfoliated a layer of stress.  A little injection of sunshine gave us fuel to face the rest of the day, and put us on the path to recover from this chronic, low-grade discontent.  The things we interpret as deficiencies in our lives cannot be remedied by sunshine alone, but today it helped.
JEB

Two

This weekend, I found it difficult to celebrate with a full and grateful heart. "Happy" birthday just didn't feel quite right.
This year, our children - bound forever by life’s coincidence to pair their births - celebrated together, turning three and one.

The grace and the merriment pressed back to back with the sorrow and the disappointment, battling for space to settle on my chest.
Letting the two of them settle against our chests was really the only thing that did feel right.

 

  

JEB

One

Three

This picture feels empty.

But this picture feels full.

JEB
Note: Celie has on Christmas pajamas.  I don't argue with a Daddy who's willing to do the bath/bottle/book/bed routine.

Music Man

Last week I failed to mention what a large part the Pleasure Guild of Nationwide Children's Hospital plays in the Spagio Celebration.  And it's not that the women volunteered all those hours just for us, for our family, but in a way it feels like they did, so I regret not having mentioned them before.  What's remarkable is that their gathering of chefs from across the globe was just a "small" fundraiser, that their largest one, an annual production, is still coming up.  

The Pleasure Guild is the oldest women's auxiliary of Children's Hospital, dating back to 1908. The "funny name" comes from even earlier days when women provided little items or treats called "pleasures" to children in the hospital.  Now the organization is dedicated to raising funds for the hospital’s Hospice and Palliative Care Program.   

Next week, the Pleasure Guild will present Meredith Willson's The Music Man, March 12th,13th and 14th at the historic Palace Theater in downtown Columbus. 

If you're local, and you're interested, tickets can be purchased through all TicketMaster locations and at www.ticketmaster.com.

Some of us Betzes are BIG Broadway lovers.  Andy and I couldn't be prouder that one of Tuck's first tricks is playing the piano.  No matter where we are in the house, if we ask him to play us a song he'll go straight to the piano, lift the lid and bang away, our own little music man!
JEB

Big Boy

He's a big boy, but even in an above-average sized body, Tucker’s got some growing to do to catch up with the size of his spirit.
JEB

Unimaginable

I gave Celia a bath this evening.  I imagined having to scrub dirt from her little feet.  I fantasized about her excitement over the gifts from the tooth fairy I'd tuck under her pillow.  I pretended she grew to be a teenager, all sinew and sarcasm.  I guessed at the level of joy her own children would've brought us.  But the fact is, I don’t know what vegetables my daughter would have liked on her pizza, and I’ll never know how she’d have taken her coffee.  I couldn’t prepare a bouquet of her favorite flowers, I can’t conjure her shoe size or say whether she prefers to sleep on her left or right side. 

I can tell you about her hair, the color of generations, the soft bridge of her nose and the placement of freckles on her fingers.  I can describe the way her bottom rib always stuck out, just like mine, and about the soft pads of her feet.
I wanted her footsteps to fall where mine had been and where mine have never gotten to go.  I used to imagine her fingers pressing the keys of a trumpet and holding the base of a stethoscope.  I could almost hear the patterns of her voice as she learned to read aloud and I could vaguely see the bend in her knees as they grew courage to jump off the diving board.  Of course she would do all those things, the ones I used to imagine.  Because Batten Disease was unimaginable.
We've made it another year now, she's almost three.  We can’t talk blithely of next year and the year after that.  We can’t take graduations and eventual grandchildren for granted.  We have new anxieties, but we've lost others.  There is no more fixation on the “right” preschool, the best music lessons, the highest quality educational toys.  Worrying about those things is the province of folks who have the luxury of marinating in possibility, and for whom the unimaginable is still unimaginable.

But we're here now, March 2010.  And we'd been afraid to imagine she'd still be with us.

 

JEB