Wear That You Care

The bodies attached to these legs love Celia every day.  But today, wearing jeans gives them the chance to bring awareness to her disease, with the hope that funds for research might follow.

Today is World Rare Disease Day.  Ninety five percent of rare diseases - diseases that affect 250 million people across the globe - do not have FDA approved drug treatments.  Whether you're wearing jeans or not, will you please consider telling someone about Celia?  Our hope is that awareness will lead to improved treatment options.

Our hope is also in these genes.

 J&A

Almost Two

I just want to wrap him, and his sister, in my arms like the long-hoped-for gifts that they are.

Little Man

Sometimes, not very often, I notice that Tucker looks small. Perhaps it’s just his surroundings, but I like when he still looks little.

And yet I pray for the days and the decades to witness the man he may become.
JEB

Hope from Harlem

Recently I received a very nice note from a fellow fifth grade teacher.  We've never met, never spoken, have no connections - her correspondence came as a complete surprise.  At some point she found our family's blog, and shared Celia's story with her students as part of a writing prompt to get them thinking about living forever.  As she tells it, the fifth graders became captivated and wanted to do more.  They devised a plan to raise money for BDSRA.

An excerpt from the note from Ms. Smith, their teacher, explains:
They created Care Cranes for Celia. These paper cranes were quite the craze for five days following random posters saying, "Celia Rocks." The kids made, advertised, and sold the cranes. High schoolers in New Heights walked around saying, "Who's Celia? How can I help her?" It was magical. 

This week these children mailed a check for $160.

To quote Shakespeare, we "can no other answer make but thanks and thanks and ever thanks."
JEB

Untitled

Words hover on the tip of my tongue fingers, but I withhold them because I know they will sound as bitter as they taste.
I try not to waste much time feeling bitter. I don’t want any life but my own. Really, I don't.
I just want her to have one too.

We need a cure for Batten Disease immediately, if not sooner.
One way you can help find it is by placing a Thirty One Gifts order (through Heather Sola) before the end of the month.  Twenty five percent of each purchase will go to BDSRA to fund research (see the Current Fundraisers tab for more info). 
I chose square utility totes for Celie and Tuck to use as Easter baskets this year.

JEB

So Bright

The sun came up this morning.  We watched it stretch over the horizon while we yawned awake.  We decided it would be an Outside day.

Most mornings we try to tell Tucker about the day, what to expect, where we'll go, hoping our previews will help him understand what's in store.  Today we explained that he could play outside, and then, in response to his enthusiasm, proceeded to explain, and explain again, that he could not build a snowman.  Do you see the sun?  It is warm and the snow is gone.  The sun melted the snow.

Getting ready to do something, anything, at this stage can feel like wading through peanut butter.  With guided questions, we helped him choose his own outside clothes.  Would you like the blue pants or the brown ones?  Which warm shirt will you put on?  Do you need a hat?  I cringed a bit at the way his sweats were shoved into snow boots when there is no longer snow, and I thought his brown striped hat might’ve looked better with the sweater he picked.  But look at him, I reminded myself, he is a person! With opinions!

Outside everything became a game, our block a virtual board upon which his attention wheel spun.  He moved ahead four spaces, pocketed rocks, spun again, popped bubbles before they hit the grass.  He trolled the backyard and toured the block, stooped to inspect nuts, squawked in response to birds, shouted hello to neighbors.  He took his sunglasses off and put them on.  Off and on.  Your future is so bright, we said.  "So bright," he repeated.  And it is.  Thank God, it is.

I confess to an absolute fondness for him.  For his budding sense of fashion.  For his slow-getting-readys and his fast fits of wonder.  And for the opportunity to share the future with him.
JEB

Remote

We were given, at Christmas, a remote to use with our camera.  We are still learning how to use it well.  Since we were all four bathed and dressed beyond pajamas at one point last week, we thought we'd give the novelty another shot.  None of the resulting photographs are stellar, but some of them capture something special.  Like the love that lives at our house.

I am grateful, more than those eight letters can really demonstrate, for the family within these walls.  Gratitude seemed, for some time after her diagnosis, impossible and remote, forever beyond heart's reach.  But I've learned that thankfulness can arrest a thousand thoughts of trouble.  So too can laughter over an unsuccessful attempt at a family portrait...

JEB

This Much

I wish Celia could stand inside this heart, too.
She slipped into mine almost four years ago, and they'll both be in that one forever.

In the Blink

These are some of the last pictures of Tuck in his crib.  He is growing SO fast.  And although I get wistful that time is passing, I do not want to go back.  I would miss the small person he is right now way too much.

As I watch his life dilate I realize he is becoming less mine and I am becoming more his.  And I know how lucky I'll be as, through some blend of alchemy and devotion, he takes parts of me places I've never dreamed of going. 

First though, I'm hoping he'll learn to stay in his new bed.
JEB

Interrupted

Parenting one healthy child and one sick, each day looms like an emotional obstacle course. And yet I have extraordinary expectations for myself, like I need to be actively happy and serene and grateful, and I have to mean it more than anyone else.
This afternoon, without the nap I hoped for and without even trying, I was and I did.

JEB
Also, if you are not a dog person, it may appear that Colby is sharing too much tongue.  He is always happy, but not so much serene.

 

Redundant

I've said it all before.  I love this girl.
I pause to be with her.  I conduct a unilateral dialogue while she is mute as fallen snow, but her eyes move under lavender lids and I believe her heart hears mine.
With hyperreal clarity I sense every minute detail and tuck each carefully into my mind.  Her manifold seductions of beauty -- rusty corkscrew curls, eyelashes charcoal against fair, flawless skin, delicate vertebral knobs -- are folded into my heart in hopes that a bit of her will always orbit the ventricles there.  
I recognize this whole experience as a shadow of my own mortality and I wonder how a mother can live past her soul.  We shift, together on the edge of eternity, her contours cleave to my curves, her comfort becomes my own.
I love this girl.

JEB

If you live in Central Ohio and are interested in another way to fight Batten Disease, please click the Current Fundraisers tab at the top to learn more about St. Stephen's Shrove Tuesday Pancake Dinner on March 8th. As long as she's not too worn out from turning four, Celie girl will be there.

Bring It On In

In essence, sibling love is lovely

I realize there's been a shortage of pictures of Celie and Tuck.  The work of plucking one still moment often falls to Andy.  With the camera he is careful not to punctuate the soap bubble of a happy time, but to preserve the good it held.  Like here, a split second so delicate it almost popped and disappeared.

Tucker smears "wips" (his word for chapstick is "lips") all over his sister's face.

This picture won't win any awards, but in it we see a big ol' mess of beauty.
I’m not sure if our habit of searching for beauty and for good, of trying hard to catch it for posterity, is borne of the wisdom that comes with age, or whether it results from living in constant proximity to death. But I do know the effort it takes to focus on what’s good leaves the rest blurry and backgrounded.
There'll be more pictures to share soon.
JEB

Back

 The Arch at Land's End, Cabo San Lucas

Physically, but not quite mentally, we're home again.  I wouldn't say that my happiness is seasonally contingent, but I will admit that a good dose of sunshine always improves my mood.  Combined with plenty of sleep, tons of great food and time with best friends, a week of warmth makes the thick layer of ice that currently covers Columbus a little more bearable.  I like our latitude, I do, but here we live with frigid temps and an inescapable seriousness.  For a week, we escaped both.  It was nice to get away.  And it's nice to be back.
JEB

Twenty five percent of your Thirty One Gifts order goes to BDSRA during February. 
Read here for more info.