Blessed

by the brightest, busiest, best

baby boy Betz.

And, beyond words alliterative or not, by his beautiful big sister.
JEB

Regarding Thanks and Giving

Plenty of people tell us they’ve been blessed through our adversity. And although it’s lovely to hear, that our daughter or our example or our words are a blessing, an inspiration, it’s not what we’d choose. And although we don’t always feel blessed, even in the unwelcome moments and even when we feel like we’re giving up a whole lot, we do have plenty to be thankful for.

JEB

Blogobble

I tend to think almost anything is blogable. But sometimes I draft blog entries and then delete them. Maybe it sounds too boastful. Perhaps a whiff of mind-numbing mediocrity hovers over some sentences. It’s possibly too personal.
Part of me wants to write without thought of an audience, without wondering where in the world my words go.  But there is some self-satisfaction, some affirmation, some joy in knowing there are readers of these words.  In the spirit of this holiday season, let me thank you and you and you, for reading.  Although I appreciate you, I try not to think about you too much when I write, try not to worry about what you'll think. They're my words and I need to let them be here.  But I am ever grateful that you're here, too.  And I KNOW you'll agree that the photos below are blog-worthy.  After all, that's really why you're here, right?

 

Hoping Roast Tuck is not on your Thanksgiving menu, but that your bellies will be full of your favorite trimmings, your homes will be full of all your favorite people and your hearts will feel full of gratitude.
JEB

Confabulation

We will not always be able to hold her close. The words we write here let us try. Although I imagine, in the future, reading these words and looking at these images will feel like trying to hug a favorite song, trying to dance with a beloved aroma.

I wasn’t familiar with the term “confabulate” until recently, when Andy explained that it’s a word they use at the hospital to describe the way people who suffer brain injuries invent stories, fantasies that unconsciously emerge as factual accounts in memory.  From what I’ve learned, perfectly healthy individuals confabulate, too, to help make sense of the world.
Already I’ve forgotten things. I close my eyes and earnestly reach into the corners of my mind, hoping to stumble across happy details. I’m frustrated when I can’t recall specifics, when I second guess whether she did something or said something. And it worries me to think that, as time passes, I’ll fail to remember even more. We don’t have video of her standing at the back door greeting Andy after work, uttering the only sentence she ever said, “Hi Daddy.” The photos we've collected won't allow us to touch the wrinkles in her chubby legs or hear her precious giggle. And we may, in fact, wind up embellishing the things we do remember, filling gaps in memory with fabrication.
Recent conversation with friends gave validity to the notion that the most distressing memories have the most persistent presence.  Although these days aren’t free from stress, this time last year was difficult in different ways. There are details from that time that I can neither fathom nor shake.  Things I'd rather not remember.
But I want to remember, well and accurately, the good times, the happy details, the real things.  And so tonight I’ll attempt to commit a few minutes from today, I'll try to stash the time I spent holding Celia in the sanctuary listening to the handbell ensemble.  She seemed to enjoy the ringing tones.  Her hair was tousled, and I brushed it from her forehead. I cradled her back with one arm, and clutched her fingers with the opposite hand. Our bodies were warm, fleece pressed to wool.  This afternoon I held her close.
JEB

I Wanna Go Back

We tried to explain to Tucker that football season is almost over, that we wouldn't be tailgating or going to any more games this year.

 What we didn't try to explain was, sometimes we wanna go back, too.

JEB

Trials and Smiles

At the end of the day, the former seem far more managable when the latter are sprinkled liberally.

JEB

Tied Up

Today has been filled with unimportance disguised as urgency, with picking up blocks and wiping down high chair trays.  Today will continue to be filled with the familiar repetition of necessary business, folding laundry and reading board books and serving meals.  Even things on the to-do list that I should cherish - nursing the baby and cuddling the big girl - aren't easy to appreciate when they're scheduled in the midst of all the other non-stop non-stoppedness.  At night I climb under the covers knowing it will all need to be done again tomorrow.  Knowing I'll be lucky if I get to do it all again.
There are days when I mother with all my strength and can muster none to do anything more.  I am not afraid to admit that I don't love every minute of mothering, that there can be a bit of drudgery in motherhood, in the same-as-yesterday toiling.  Sometimes being a mother ties me into knots instead of tying me to the people I love.  And I realize that I can love my children with all of my heart, but not with all of my time.  I feel a twang of guilt, but sometimes I need to get away.  A trip to the post office can feel like an escape.  I take my time, hope for a line, drive home slowly so I can cry in the car... 
Today is only half spent, but I know that tonight I will collapse on the bed with typical exhaustion.  And I'll look forward to another day, really I will, grateful to untie the strings tomorrow's wrapped up in.  And also, if I'm being honest, to a reason to get out for a bit.

 JEB

For Sure

Yesterday, my sister's colleagues at OSU's MICU held a walk at a nearby park, to raise awareness and funds for Batten Disease, and to honor Celia.  My sister predicted it'd be low key and guessed there'd only be a few people participate.  I'm not sure how many people were there, but my sister underestimates how well-liked she is by her coworkers.  I don't know how many dogs were there either, but I'm quite certain the canines were only slightly outnumbered by the humans. I may be confused about what low key means, but there was a breakfast spread and there were awards, and there were dog treats and dog trophies too, and I'm pretty sure details like those do not describe any sort of understated affair.  I'm not sure how much money was raised for BDSRA, but I know it doesn't really matter.  Although research dollars are critical, they won't help Celia.  The love and support the MICU staff shared yesterday helps though, and it matters - for my sister, and for us and for her, for sure.

JEB

There's Not Always

Tucker will visit the Horseshoe again today.  We're going to take him to the OSU v. Iowa game.  Some might consider it a wasted ticket, taking an eight month old.  He'll likely nap through part of it.  We'll need to feed him in the stadium and odds are he'll require a diaper change at some point, so one of us will miss some plays.  We could wait, take him when he's older.  We've learned lots of lessons this year.  One of them is that there's not always next year.  So Tucker will visit the Horseshoe again today.

And, we'll try to keep him off the field this afternoon.
JEB

Devouring Knowledge

Poppy John style.

Relative

Tucker has been sick for several days.  What began as an elevated temperature and sneezing turned into a fever, runny nose, earache, coughing mess.  He has been one sad, tired wreck of a baby, just not himself at all.  The kind of sick that inspires some to conduct frantic Dr. Google searches and others to share social media messages of woe.  But for our family, despite our inexperience with this kind of infant illness, despite our sincere sympathy for his discomfort, despite the dried snot on our shoulders and the sleep deprivation, this sick seems so simple, so survivable.  Because it was this week last year, after spending all day with a team of developmental specialists, we were told our daughter's MRI showed diffuse volume loss, that her brain had atrophied, that she was very sick. 

JEB

Out the Window

Tucker's first eight months have flown by. He has a bit more hair, silky fluff like the stuff inside a milkweed pod, just dark enough to be disqualified as blond. He is generous with grins, each bigger than a slice of watermelon. His doe eyes are painted the perfect shade of serene, fringed with outrageously average lashes. He propels himself using an effective yet peculiar butterfly stroke/inchworm squirm. He climbs steps hastily and cruises around furniture with flair.

He flings ashes from the fireplace, splashes water from the dog’s bowl, tips bathroom trash cans, empties kitchen cabinets, swipes coffee and side tables clear. In fact, he's been known to do all these things before 10am on an average day. BUT, we are thrilled to have a busy little person in the house, one we can chase after and clean up behind. One who stands at the back door like his sister did, and leaves handprints on the glass, right where they used to be, right where I needed handprints to be again.

JEB

Dear Coach

I've been practicing.


Love,
Buckeye Tuck

Raise Raze

We can’t say that we’re raising Celia. We had wide open spaces in our hearts for her to grow up in, but we won’t get to see her to maturity. Now, we can only try to keep her comfortable. And most of the time, lately, she seems to be.

But when she isn't comfortable, or when we allow ourselves to think beyond the moment, her disease seems to raze us. We try not to let it destroy us, don’t want it to tear us to pieces.
And it won’t, not completely.
JEB

The Shoe Fits

Two years ago, we took Celia to OSU, with Grandpa Rod's sister Cherie along to capture Celie's first visit to the Horseshoe.

CEB - OSU, fall 2007

Cherie went with us again last week, to take photographs of Tucker's first experience at the stadium. Through some stroke of serendipity, a gentleman walking past (whom we later learned was the AD of Finance and Operations) asked whether we'd rather take pictures on the field. He unlocked the gate and led us into the stadium and onto the turf. Several minutes later, football players began to arrive for practice. The Buck's long-snapper offered Tucker the football, and arranged it next to him so the OSU logo would show, while the punter tickled Tuck and talked to him. All of this inspired lots of smiles, which Cherie expertly suspended in time.

For a family photo session that seemed semi-bittersweet, the scales tipped toward the sweet side last week. Mr. Jay's kind invitation, the sincere interest of the special teams guys, the look on Tucker's face as he crossed into the endzone -- these things will all be part of the story we'll recount to Tuck someday, about his first time on the field.

JEB

Irreconcilable

Gratitude for what is, and aching for what is not.

JEB