He watches, wags and waits for affection.

I'd like to believe he wishes for a cure, too.

He is a dog who invites the descriptor good boy.
He'd also like to invite other friends of Celia to walk with him tomorrow.

JEB

Take Ill

Most days we live with a fairly particularized parental angst.
But he looks like a typical two year old, Andy explained, as Tucker lolled around the living room, jammies half on, bilateral snot trails running down his face.  This is just the normal kind of sickness for which there is a relative abundance of advice, and complaint.

Resting near him on the couch was his sister, a persistent perspective check.  She is an emissary, a blunt and very human reminder of what's big and what's not, of what's hard and what isn't.
We've filled up humidifiers, doled out Tylenol doses, anticipated sleep interruptions.  He is not miserable.  His ailments are temporary, his symptoms treatable.

With a lethargy that wipes the shine right out of his big brown eyes and without an appetite for even green popsicles, we can tell he feels puny.  But as bad as we feel for him, we are simultaneously relieved to be inside the known malady norm.

These pictures were taken last week, when Tuck felt good and was experimenting with sunlight, a mirror and a bouncy ball.  He'll be well again in no time.
JEB

We do, huge and aching.

Our lives will not proceed as we loosely envisioned even before her birth, but our grief over perceived and predicted loss has been amortized.  And while we mourn the child she won’t turn out to be, we love her in a huge and aching way.

The truth is, we can’t plan who our children will be – whether they’ll lead the band or excel in sports, whether they’ll yearn to fit in or fight to stand out, whether they’ll be tall or short.  We can only plan to love them.
And we do.
JEB

Dressed

Tuck, where are your pants?  If you'd like to go play at little Molly's house you'll have to put on your pants.
I left my dressed by the potty!

Hey buddy, it's time for church.  Let's get dressed.    
I have dressed in my my room!

Tucker, you need a bath.  Help me get your clothes off please.
I do it!  I take my dressed off, I do it.

JEB

"Browing"

It’s one of those words that, despite modeling the correct pronunciation by repeating what he’s said, continues to be his own.
The berries on my tree are done browing now. 
Hey, I browed all those new flowers (mums)!
And he uses it most often to talk about baby brother.  The baby in your tummy will brow big just like me!
Now that I’ve written it down, it seems perfect. A little brother, growing.
JEB

Upcoming

Andy and Celia were on our local NBC channel this morning, working to raise awareness of Batten Disease and promoting upcoming central Ohio fundraising opportunities.  We were so impressed with Gail Hogan as she hosted the Spagio Hospice event last winter, and were pleased with her reporting on Daytime Columbus today.



Please visit the Current Fundraisers tab at the top of the page to learn more about Barkin' for Batten on October 15th, and the OSU MICU Walk for Celia on November 6th.

JEB
The image above was designed by Joshua Smerdel, a Batten parent in Northeast Ohio.  It will be used on shirts for sale at Celia's Walk.

Being a brother is better than being a superhero.*

As his own world expands, their shared world shrinks, the territory of common experience left behind.  Still, he includes her in life.  He leans over, hunched like he’s protecting a secret, to tell her what we're having for dinner or who is coming to pick her up.

A few days ago, as she lay on the floor where Andy left her while he fetched diaper changing supplies, Tuck paused near her to tell her she was beautiful.  "Wait right here," he said.  "I need to get my stool."  He took the stairs to his room, carried the stool down the hall to her room and set it in front of her dresser, so that he could reach the drawer with hair things.  He chose a pale pink Easter bow, one that neither matched her outfit nor corresponded with the season.  He put the stool back and carried the bow downstairs.  He described the ribboned rabbit as he clipped it on top of Cel's head, and again declared her beautiful. 

And that small world they do share?  Incredibly beautiful, too.

JEB

*Marc Brown, author of the Arthur series