Been {2months}

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.

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

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

To Be Continued

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?

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

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

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

'Cause we've had a Batten day

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

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

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

One of the Nicest Days

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...

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

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!