Standing Around

In December, Tucker practiced this a lot.

Unwrapped

Buried beneath wrapping paper and ribbons, behind the faux white beard and mounds of mashed potatoes, in the midst of bowl games and interstate travel, is Christmas. Not the shiny, consumer version that encourages hopes to climb high, but the pure, sacred holiday that counters contentedness can reign.  Although this season hasn’t felt as merry and bright as we wish it could, we were reminded that excitement and gratitude are not meant to be reserved only for packages under the tree, but for the gifts of family and of love, all year long. 

Due to the complexity of Celia’s care, we’ve gotten to know family better, those who have filled in as second and third and fourth fathers and fifth and sixth mothers. We’ve needed to depend on family more than ever, and we’re grateful for their willingness to help and that our relationships with them have grown.
We weren't fully aware of the extent of our support system until tragedy struck. Since then we've been upheld by friends, their sturdy scaffolding shoring up our emotions and bolstering our moods, many even in the midst of their own ups and downs and losses and pains.
Our marriage has been strengthened, because we’ve been forced to communicate about difficult subjects, to be honest and to trust. We’ve had the for better, we've had the for worse, and we have each other.  We’ve gained the ability to laugh at the absurdities of our life when tears are the only alternative.

It comes in unexpected packaging and without gift receipts, but when we peel back the sorrow and discard the anger, when we toss the worry and expose what's left, we can find almost as much joy and beauty in the holiday season as there was in her.  And, we can try to trust the return policy.

JEB

* Thanks to Great Aunts Sally and Angie for catching a Christmas smile.

Santa Baby

Evergreen

We can’t lose our hope and our happiness with her, all at once.
He renews us, and helps us hang on to some of all three.

JEB

Seeing Red

Lately, I've been feeling angry. I understand that it's normal, part of the process, another expression of grief. There’s a lot to be mad about, but it’s not easy to be angry.  Sad felt better, easier, a tad more familiar.  Sad seemed organic, able to dissolve quietly and on its own.  Anger just sits, savage and intractable.  I hope eventually the feeling will subside, that I won't be angry forever.  But right now, I am.

It's the railing against fate kind of anger, the kind that asks Why us? and Why her?.  It's the kind of anger that makes me want to lash out, to cast unwarranted blame. It's the kind that lies dormant until a catalog arrives in the mail - taunting toys and teasing traditions - and the folly of my expectations, the failure of my dreams, arrives along with it.  It's the kind that's triggered by well-meaning comments, words I've likely misinterpreted, that get tangled up with jealousy and yearning.  The kind that cycles and worsens as I feel angry with myself for feeling angry.  It's the kind of anger that makes me feel like I'm all buttons, and they're all pushed.  The kind of anger that is divorced from anything specific but connected to everything in general.  The kind that swallows me up whole and distracts me from important things.  The kind of anger that leaves me feeling utterly exhausted.

Being not so well-acquainted with anger, I'm not sure what to do.  But I do feel like I better apologize upfront, make a blanket statement to everyone I see or speak to.  I’m afraid, all too often, my emotions are misdirected, the worst ones are shared with the people I love the most.  And I'm sorry.
Anger doesn't mesh well with the season.  I know.  But this isn't how a two-year-old's visit with the man in red is supposed to go.

JEB

Dark Chocolate Peppermint

I wasn't sure that Jeni's Splendid Ice Cream left any room for improvement. 
But I've discovered that it tastes even better shared.

JEB

Baby, It's Cold Outside

And we've tried to freeze these fleeting days with some photographs by the fireplace in cozy Christmas PJs...

 

JEB

Last Verse

When I'm tired, my emotions sing louder.  And they don't always have nice things to say. 

But when I feel completely overcome, I try to invite words like these to ring through my head:

Bless all the dear children in Thy tender care, 

and take us to heaven to live with Thee there.

JEB

Gifted

These days there's lots of talk of shopping and presents. It goes without saying that there's really only one gift we want... We know from experience though that sometimes the gift you ask for isn't the gift you get, sometimes the miracle you hope for isn't the miracle you receive.

We were expecting Tucker when we discovered that Celia's illness was hereditary, that the new baby could be sick, too. And so we wished and wished that he would be spared. We prayed and prayed for a healthy baby. We didn't ask for a handsome boy with silky hair and almond eyes, one who would be a quick study or one who would have such a pleasing personality. We didn't wish for an infant who would sleep through the night or even for one who would not spit up. We just wanted healthy. We gave up on good looking, we gave up on gifted, we gave up on sleep and the thought of less laundry. We even gave up on average. We stopped yearning for everything except healthy.
Over the past several weeks, Tucker has gained new tricks at a near daily rate. First he leaned in and gave kisses. Next he clapped and gave high fives and he waved. And then he stood by himself, albeit briefly. His talents multiply and his gifts keep giving. Of course, he doesn't yet recite Shakespearean sonnets and he hasn't solved cold fusion. And he chews on the laptop cord and crawls headfirst into the coffee table. And we are thankful... for healthy and for what seems like average, what feels like normal. He aims to unload the dishwasher right along side, or collect the mail from where it’s spread after it’s slipped through the front door slot. But he’s only nine months old, and there are knives in the dishwasher and he gives himself paper cuts and gags on the bits his teeth rip from the bills. He’d like to help scrub the dog from beside the tub and to lend a hand hanging ornaments from the tree branches. But he’s fallen over the side and into the bath water, and he shakes the shiny ornaments like they're a whole new batch of rattle toys. His style of helping isn't especially helpful. But, he is helping us. We can't get over how lucky we are to have him, what a privilege it is to watch him become himself.  He is such a gift.
JEB

Hope for the Holidays

If you find yourself in a frantic, last-ditch effort to tack a little Jesus on to this season's pagan parade of materialistic magic, instead of giving your friends one more candle they don’t need, your dad one more necktie he won’t wear, your grandma one more high-caloric health hazard, would you please consider the following options?

Dave’s Homeroast, coffee sold by the father of Clifford, a young man who is afflicted by the juvenile variant of Batten Disease, gives one hundred percent of the proceeds to BDSRA. Andy considers himself a bit of a coffee connoisseur, and he's a big fan of Dave's beans, especially the Nicaraguan blend. Purchasing coffee from Dave is one of those situations where a little hill of beans can make a mountain of difference.
Garrett’s Wings, a foundation that honors a little boy lost before age three, has promised to make a dollar-for-dollar match on all contributions to BDSRA for infantile Batten Disease research (donations must be marked Garrett’s Wings Challenge Grant and must be received by BDSRA before February 1, 2010). If a notice about the donation isn’t, by itself, sufficient as a gift-substitute, if you feel the need to spruce it up a bit before licking the envelope, perhaps you could accompany it with a poem or a prayer for the recipient.
Cardthartic (whose new website isn’t up yet, but from which you’ll soon be able to order cards) continues to share proceeds from Celia’s card with BDSRA. For Columbus locals and for people in our hometown of Gallipolis, the cards should be available at both The Book Loft and The Purple Turtle.
Please also remember that using Good Search to navigate the web and making purchases through Good Shop are easy ways to help. Just designate BDSRA as your charity of choice.
Our family is not the only one whose holidays, whose every days, are affected by Batten Disease. Thank you for considering the aforementioned ways to support efforts to develop treatments, for giving hope to the possibility of a cure.
JEB

New

Tucker is nine months old now, and he doesn't seem so "new" any more. He stands more than he sits, and we talk about how tall he looks, rather than how long he is. He wears jeans and hoodies more often than onesies, and appears to be more boy than baby. He still likes to be dandled on our knees and to rest his head on our shoulders, but he also likes to clamber up our legs and to use our appendages to assuage his aching gums. He still appreciates lullabies and story books, but he'd prefer to add his own harmonies and to turn pages at his own pace.

There's something alluring about newness. The feeling of a new day, the smell of new crayons, the crispness of a new bill, the crack of a new book. Newness is invigorating, it promises possibility and hope.

Tucker walks, practically runs, behind the block wagon, and he doesn't seem so new any more. He feeds himself Cheerios and drinks from a cup and he doesn't seem so new any more. Tucker no longer uses a pacifier and boasts five pearly whites, and he doesn't seem so new any more. He responds to his name and provides perpetual prattle, and he doesn't seem so new any more.
But every day we find something new to love about Tucker. And every day he promises possibility and hope.
JEB

Baking Spirits Bright

It’s interesting, how closely emotions can be related.  This is evidenced in Tucker on a daily basis – depending on a variety of things, including how tired he is, a big chuckle can turn into a fast sob. We experience it, too. We’ve written before how something so happy can make us so sad, and how laughter through tears can be the best emotion.
We have a long list of things we want for Christmas, none of them store bought or handmade -- to shake the instinct to hyperparent Tucker, for it not to be necessary to plan a funeral, that Tucker will have tucked away, forever, some memories of his sister, for Celia not to hurt... What we wanted most for Christmas, what we’ve waited years for, was that look on a little face, the wide-eyed wonderment, the joyful surprise.  We won’t get that this year.  At least not in the way we'd imagined.

But Santa knew what Celia might have wanted for her third Christmas; Santa also knew that although she wouldn’t be able to enjoy it, other children would. So he delivered it, early, to the church nursery.  And from  the report we were given, there was some wide-eyed wonder, some joyful surprise.  So far we've only heard stories and seen photographs, but we’re prepared, eager, in fact, to see other children use the kitchen, expecting that our emotions may be a bit tangled when we do.  We’re pleased with Santa’s generosity on Cel's behalf though, and we’re confident that the gift will make lots of little nurserygoers’ spirits bright, this holiday season and for years to come.  Today, seeing the kitchen being enjoyed is making us smile. 
JEB

Decoded, again

Through the vicarious window of your computer screen, the truth about Celia’s disease comes only in fits and starts, clouded by physical distance and by our reluctance to share too much. Our blog is merely a mostly-polished fragment of our reality. We try to balance the positive with the hard stuff, to use discretion.
We last shared specific details almost nine months ago in March, shortly after Celia turned two.

 Celia, March 2008, age one

Now, she has more difficulty holding her head up and has lost muscle tone in most of her body.  She's been excused from the car seat law, and rides on someone's lap, or in a beanbag if another adult is not available to ride along and hold her.
She keeps her fists clenched and her arms are usually curled in, her torso balled up along the curve of her spine.  Although she's not quite as heavy as she once was, it's a challenge to carry her because her body is so limp and her neck so weak.  Her once meaty thighs aren't nearly as snug in her pants, and waistlines are now loose around her middle.
Her prescriptions continue to be changed and tweaked, and we're working down toward two daily doses so as to eliminate the need to wake her for medicine.  We use a pill crusher to grind everything into powder (several bites worth) and usually serve it with yogurt or pureed peaches, applesauce or oatmeal, with lots of cinnamon and sugar to mask the medicinal taste.  Sometimes she spits the pharmaceuticals and food right back out, and we carefully scoop them back in, hoping she'll swallow.  The process of feeding her just a few bites can feel like it takes all day.
She doesn't eat and drink regularly, perhaps because she's not hungry or thirsty, but sometimes because she is unable to coordinate the necessary process.  When she's interested in drinking, we mix nutritional supplements and thickener, and sometimes cocoa, in with milk.  When she's not able to drink, we use a syringe and drop liquids in ounce by ounce, slowly over the course of the day.
She sleeps a lot.  She rests in a variety of places, usually in the same room as the rest of the family and our noisy routines don't often disturb her.  Her circadian rhythm isn't very rhythmical, and we haven't been able to discern any patterns.  She's frequently awake through the night.  Sometimes she's content though, and the person whose turn it is to sleep with her is able to rest.  And sometimes, no one sleeps.
She'll share a rare, random smile, mostly when she's dreaming.  But more often her face contorts into cringes that we interpret as pain.  Her Hospice physician explained that her whimpers might give more information regarding her distress than we had considered -- when she feels really rotten and can't even muster the energy to sob, she whines softly and moans quietly to indicate severe discomfort.  And our hearts break into pieces even tinier than hearts should be allowed.
Some days, when she's awake, she cries a lot. So much that we wonder how there can be any cry left in her. Cries that, more than two years later, feel like they come from somewhere deep inside us. Cries that no longer call us to action, because there is nothing we can do -- our parental instincts to help calm the cry muffled in the way we wish the cry could be.  Cries that Valium and Morphine and Oxycodone can't always pacify.  Cries that make us hurt almost as much as she must be hurting.

Most days we wait.  Wait for her to wake up so that we can offer food and drink, so that we can push meds.  Wait for her to urinate, so that if she does, we can change her diaper.  Wait to see if the pain and anxiety meds will kick in so that she may stop crying. Wait to see whether she'll sleep at night, so that we can too.  Wait and wonder whether she'll wake up in the morning, because we know that some day she might not.  And although there's lots we won't miss about any of this, we've gotten a taste of what it will be like to miss her, because really it's not Celia here with us any more, it's just the shell of the little girl who once danced and giggled and kissed and hugged.  And we already miss her.

J&A

All Kinds of Wonderful

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