Betz Family Columbus

She couldn't recover. I'm trying.

2012-02-12T23:30:00.002-05:00

Each day, loss announces itself through shameless novelties – the empty end of the couch, a small spoon untouched. Like a deep bruise, reminders of her jolt me when I bump against them. I suspect they always will. The blender whir is no longer a prelude to pureed meals and without the bathing chair the tub seems empty. There have been subtle changes too, like a slight shift in temperature or the absence of a background hum I’d only vaguely been aware of.
Nostalgia pulls me into yesterday as I watch used-to-be happy home movies. Anxiety pushes me hard into tomorrow too, and I miss would-have-been happy kindergarten registrations. It feels as if we're living forward and backward at the same time, excavating details from the past while trying to figure out what to do next, while trying to think clearly at all. I'm paralyzed by simple decisions, confused with easy directions, forgetful of important details. And I can't stop thinking about every horrible (albeit unlikely) thing that could happen to the boys. All this with the very solid realization that when I feel like I might collapse from the pressure of one day, it’s not wise to add the heft of tomorrow’s worry. And yet, I do.

JEB

Eleven

2012-02-09T21:45:00.000-05:00

At our house, lab hair has been a constant accessory and an occasional condiment.

And he was a constant companion and an occasional jungle gym.
We were lucky to spend eleven good years with him.
Part of each of us left the house when he did.
A&J

Yesterday

2012-02-08T23:40:00.003-05:00

I asked the question half in jest and whole in earnest. Could things get worse?

Yesterday was hard. The kind of hard that made my limbs feel like sand bags and made my brain turn viscousy and slither down my spine where it became a pool of exhausted desperation at my feet. When I feel like that, like I’m losing strength and leaking courage, I have to remind myself: I can do hard things.

Today was better. And I realize life may always be this way, complicated and quicksilver, shifting between imprecation and blessing.

JEB

On the Bright Side of Dawn

2012-02-07T08:11:00.000-05:00

Enjoying the drowsy quiet of a new day.

JEB

HB

2012-02-06T08:37:00.002-05:00

The whir of the coffee grinder fills the kitchen, relieving us both of the pressure to speak. He doctors mine, leaves his black. My thoughts match the color of his drink, surely just as bitter.

He’s not the only father who’s ever counted on things a father should be able to count on – recitals and pancakes and tussling. He’s not the only husband who has worried about his child’s mother. But he is the only guy in this house who celebrated another year of life without his daughter.

Andy worked all weekend. He did get to watch football with his boys last night. We visited him at the hospital yesterday, and Tucker gave him the painting he made: "black circles" with water colors.
There shouldn't be too much black right now though, so we plan to stretch the celebrating out through the week with more bright swashes of happy.

JEB

It is February

2012-02-02T21:43:00.000-05:00

And yet we found ourselves spending a day at the zoo, and an evening barefoot on the back patio...

JEB

I can scarcely think of anything I'd rather record.

2012-02-01T00:04:00.002-05:00

When he woke from a nap last week, Tuck said, "Celie talked. She talked." I hope she continues to speak in his dreams for years to come.

When he finds a container that’s empty, he declares, "There's no something in this box."

When he wants to snuggle, he asks, "Will you sit benext to me?"

When we asked him, for at least the tenth time, to stop plucking the "white pine cones" from the peace lily buds, because it hurts the plant, he replied, "Lily is not sad. She don't have any face."

When we shared some of his sister's special dresses with friends he saw them and said, "Those dresses are Celia's. She was a girl."
He refers to her memorial service as "Celia's goodbye party."

He mixes tense, present and past. He creates his own words, and his own realities. He verbalizes delight without dialogue.
And somehow his every expression, his every idea, alleviates a layer of sorrow.
When thoughts gallop through my head like wild stallions, the kind that can trample both spirit and sanity, it helps to take note of Tucker's talk.
JEB

Been {2months}

2012-01-28T20:13:00.000-05:00

Tolliver, you've been here for two months.
You've been to your sister's funeral.
You've been to your cousin's wedding in California.
You've been dressed up and sized up, passed around and kissed all over.

You've been a blessing to our family.

JEB

Cont'd.

2012-01-25T22:13:00.000-05:00

Last week we could hear whispers, could literally feel the prayers of relatives and friends, colleagues and strangers who were thinking of her, of us. They came like falling stars, tiny bits of light splintering the great blackness of grief, a celestial shower of love and peace. Thank you.

Cumulatively, comments on Facebook and chime-ins on the blog and e-mails and texts lined up like so many luminous soldiers on the screen; your words created a resplendent wall against the dark that could have otherwise swallowed us whole. Thank you.

We hesitate to begin work on official thank yous, mostly due to fear that we'll forget someone. It felt like the entire contents of our excel address file dressed up and were exported into pews in non-alphabetical order on Thursday. Family flew in and friends drove over, former fifth grade students and blog readers and hometown friends and healthcare professionals showed up. And from those who were only able to be with us in spirit, stories of kindness poured in -- folks called old friends, read extra books with their children, helped strangers stuck in the snow, paid for the car behind them at the drive-thru. Kids went to school with treats for classmates, came home from school with notes from teachers praising friendliness, students shared lunches with peers and wrote poems. Donations were made to support research to cure Batten Disease and to help other families faced with pediatric hospice needs. Our refrigerator is full of lovingly prepared meals, flowers brighten every room of the house, Andy's vacation day bank is quite a bit bigger, our front walk was cleared of snow, the mail slot continues to overflow. We've appreciated invitations for lunch dates and coffee breaks and after dinner drinks, and we've enjoyed photographs of Celia we'd never seen before.

Life, and death, teach the doctrine of reciprocity, that goodness must be returned or passed along. We have a LOT to do. Someday we will repay the world for your acts of kindness to our family. It will take years and years for us to pay back, but we'll give it our best shot and we'll hope that it may serve as recompense for our appreciation, that our efforts to be good toward others will mean more than our words right now.

We are immensely grateful for all of you who live with an inner glow so powerful that its warmth extends and enters our lives. Hers did, and so does yours. Thank you.

Celia at Broad Street Presbyterian Church, Tucker's baptism, fall 2009
photo by H. Bruce Wilson

Jenni & Andy

Brothers

2012-01-24T21:56:00.000-05:00

The gravity of Celia's absence seems to magnify the love affair we have with these boys.

To Be Continued

2012-01-22T22:58:00.001-05:00

While merely a single breath seemed to anchor her body to this world, we spent last weekend soaking her in and loving her out.

And then for several days the funeral loomed, a fixed point on the calendar of sorrow, an opportunity to focus our diffuse yet infinite mourning. Nearly every action we took last week was geared toward the service.

Now we face the hollow expanse of life without our daughter. What next? I know we'll find ways to honor her life instead of losing our minds. You've helped us with that already.

The more confusedly my thoughts entwine, though, the more solid grows my silence. I want to say thank you, but better than just that. Some combination of grief and exhaustion and newborn has stolen every word I need.

I'll find them, soon.
JEB

Do This?

2012-01-19T07:15:00.003-05:00

It ended the way we thought it might end. Better, even. But that doesn’t make it hurt any less. What does ease some of the pain, however, are your words and deeds. Thank you so much for wrapping our family in such love, for sending all your sympathy. Please, though, don’t express condolences today. Please do this instead: Share a memory of Celia, or relate a lesson you learned from her. Tell us about something nice, something simple but kind, that you’ve done for someone in her honor. Give us, if you will, something to hold on to when we wish we could hold her.

J&A

Celia Eleanor

2012-01-15T22:33:00.000-05:00

Edited to add: A memorial service to celebrate the life of Celia will take place at Broad Street Presbyterian Church at 4:30 p.m. on Thursday, January 19, 2012. Children are welcome as we truly hope this will be a joy filled occasion despite our sadness. If you can not be with us on Thursday, then we hope you will do something nice for someone in honor of Celia, and send a note telling us about that. In lieu of flowers we would appreciate gifts to the Batten Disease Support and Research Association or to Nationwide Children’s Hospice in remembrance of Celia.

3.7.07 - 1.15.12

Snow

2012-01-13T13:29:00.000-05:00

He doesn’t appreciate the science behind snow. But he does like to eat it.

'Cause we've had a Batten day

2012-01-11T22:50:00.001-05:00

It's difficult to articulate the complexities of death in slow motion.
It's harder to watch it happen.
There are these jagged days, the kind that leave me emotionally gutted, when any semblance of a composed exterior cracks open to reveal the entire bewildering ordeal.
I know I am entitled to anger, but I feel like it's a disgrace to grasp at it.
I know one of the greatest gifts I can give myself through grief is permission to be where I am, to feel what I feel, to live without frustration or judgment.

I want my shoulders to relax 'cause they’re riding really high. I want to have these feelings, but I don’t want to let them have me.

JEB

Unruly

2012-01-10T22:49:00.000-05:00

The hair of a little boy who just rolled out of bed.
The behavior of a little boy who didn’t stay in bed quite long enough.

Scrumptious

2012-01-09T21:44:00.000-05:00

I could scoop him up and take a sizable bite right out of his cheek.

One of the Nicest Days

2012-01-07T23:03:00.001-05:00

Mother Nature reached her long arm into the future, plucked one of the nicest days, and dropped it -impossibly perfect- right on top of central Ohio. A beautiful, borrowed break from the season, this morning was surprisingly warm. With a come-hither gleam, the mild weather called for us to be in it.

Sunshine twined in the stray curls that stuck out blonde beneath Tuck's hat. And as we held hands on an unhurried, unworried adventure, our fingers twined too, tight with love and loose with life.

JEB

Gradually, and then Suddenly...

2012-01-04T20:50:00.000-05:00

Although it was three years ago that we received Celia's diagnosis, our lives are not neatly divided into before and after, there's not one day when a bomb hit and everything changed. It was a slow circling of the drain -- knowing something was wrong, realizing how very wrong it was, watching her spiral downward. To borrow from Hemingway, it happened “gradually and then suddenly.” It used to feel like the earth was bobbing and weaving beneath our feet, spinning, and dragging us along with it. There was a period of time when a good investment meant no longer contributing to her 529 but instead purchasing big sunglasses to hide the tears in public.

Today there is not nearly as much misery attendant to her condition, another development that seems to have occurred gradually and then suddenly. We know, now, that sorrow can be the parent of joy we never imagined. We credit her with the redirection of our outlook, but it's also due, in large part, to her brothers. This one certainly offers an awesome example of radical optimism for all of us.

JEB

New Era

2012-01-03T14:04:00.000-05:00

Coach Meyer signed a contract to lead the Buckeyes the same day Tollie was born. Meeting the new baby was a redirectional affair for our family. We're hoping the coach takes the team in a new direction, too.

At his one month well-visit today, Tollie fell in the 95th percentile for height and weight. He may be ready to play before Urban's contract is up...

Thanks for the onesie, Aunt V!

Nothing Lasts Fir Ever

2011-12-31T15:37:00.001-05:00

I turned the tree on last evening, something I might have been ashamed to do Januarys past. It is the new year, after all, and Christmas is over. There hasn't been much time for undecorating here, and not a lot of pressure to do it anyway.
I felt a crescendo of anticipation leading up to celebrations last month, but I didn't let the holiday season breathe down my neck the way I have before. And I've continued to usher adagio days, welcoming twenty twelve at an easy pace. I won't be listing resolutions in some New Years manifesto, but I will acknowledge a desire to find purchase in each day, to make time for the things that matter.

Tollie's learning to roll over!

There's a common notion that doing nothing, or very little, is somehow bad. Confronted by rushaholics caught in the grip of urgency, I want to remind myself that slowing down is a noble alternative. With three small children, doing nothing, or very little, is hardly an option. But days with soft edges and shiny spots, prosaic days when we're all happily alive at the end, are the goal.

Tucker's learning that stamps are meant for paper...

Plenty of things serve to remind us that children grow up and leave home. Plenty of things serve to remind us that not all children grow up and leave home. Right now rolling and stamping matter, and we just can't be consumed with the future much. We'll get the tree down eventually.

JEB

Looks Like

2011-12-29T23:30:00.000-05:00

We're not sure whom Tolliver resembles, where his dimpled chin came from, or whether his eyes may stay blue. But we do have a vague idea of what he might look like were he to end up with red hair:

*Andy's idea.

Already

2011-12-28T10:31:00.000-05:00

Tollie is already one month old.

He stretches and snuggles and coos and smiles.
He sleeps, sometimes.
He eats and grows.
He spits up.
He rolls over.
He squirms out of swaddles and pushes out the pacifier.
He cries and poops.

He fits right in here.
It's astounding, really, how something so little, relatively speaking, can already occupy such a big space in our hearts.
JEB

Christmas Past

2011-12-26T12:40:00.000-05:00

Christmas Present

2011-12-21T22:58:00.000-05:00

It's fair to say there are moments of being overwhelmed. Overwhelmed by how much we take on, give out, let in, heightened by the busy holiday season.
But then, just then - a minute before utter panic sets in - a moment like this one occurs. A sliver of peace, a clear sign of love, the strong feeling of family. Stress is quieted and doubt is overshadowed by the reminder that time we spend together is the gift.

May it be yours, too.
JEB