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