Little Brother

Dear Tucker,

I'm not sure that you'll grow up thinking of yourself as a little brother.  Of course we'll remind you that you had an older sister, that she was smart and beautiful and that she'll always watch over you.
I am sure that I will never forget how much you loved her. 
You look for her from room to room, peeking under blankets you recognize as hers, climbing on chairs and into her bed in search.  You make the "s" sound when you see her, for "sister" or for "Celia."  You hold her hand and kiss her forehead, you share your blocks with her and show her books.  When we don't allow you to touch her (because she's sleeping, or because it hurts when you pull her hair) you throw big fits.  You stick out your bottom lip and you whine and throw yourself to the floor.  I wonder if you know your time with her is limited.
You love your sister more than bears love honey, and more than any other expressions I can recall.  I wanted to record your love for her here, but despite an adequate facility with language and despite several attempts to explain it, I can't find the words to describe how big your love for her is right now. When it comes down to it though, the words I don't use may be just as important as the ones I do.  Because when I see how much you love your sister, I know it's not something I'll need to explain to you.  I know it's something you'll never forget either.
Your big sister is lucky to have a little brother like you.
Love,
Mama

Promise

Last fall we promised to post about Cardthartic's Book Loft event for BDSRA, and we're finally following through. Cardthartic's new website is up, and although we're not sure the launch is official until next week, we think the new site looks fabulous.

 photo by Amy Parrish

When this photo was taken, her exterior belied an extraordinary problem. But Cardthartic saw promise. Cardthartic saw her light. They saw a faerie and they organized an event that allowed so many Celia supporters to show love and to share compassion.  Over $4,400 was raised for BDSRA last September, money that allowed the continuation of promising research aimed at finding a cure.

But that's not all.  Cardthartic promised to donate all proceeds from the sale of Celia's card, anywhere and forever, to BDSRA.  It says so right on the back of the card.  If you haven't seen one yet, and you'd like your very own, please visit Cardthartic's new website, where you'll be able to view and order Celia's card (Little Reminder #329) and many other cards that likely capture exactly what you want to say.
It's evident that the folks at Cardthartic understand that problems to be solved aren't as important as people to be loved.  But the promise of an eventual cure for Batten, of solving the enzyme problem, seems more deliverable with every donation... and the big one from Cardthartic's Book Loft event means ever so much.
JEB

Honey Moon

Twelve moons have swelled since he joined us here, eleven months ago.

He is so thick with sweetness, spending time with him is intoxicating.  His gooey goodness precludes sobriety.

You'd think he hung our moon.  
JEB

Bowl Day

We don't own a sled.  So we improvised with a bowl.  Our idea was met with some skepticism.

The Pits

Although we don't want to keep lamenting her horrible illness or forcing the findable joy, there is nothing else.  There are no anecdotes to recount with pride, no sweet pictures of perfection to share.  She has a disease and, sadly, the disease has her.  The pain of her being here, the pain of the idea of her not being here, both shoot to the pit of our stomachs.  So we let the sadness visit and we cling to the treasures, we live breath by breath and laugh by laugh and tear by tear.  And we try to remember that our worst is not the worst.

JEB

By the Numbers

Five days without a computer, because he knocked it on the floor. And then a fistful of cash to fix it.
Nine teeth, four on top, five on the bottom. And always a smile that splits his face in two.
One new word, considered official now. "Mama," he speaks.  And it leaves me with zero words, unspeakable joy.
Eight steps, entirely unassisted, all in an effort to get to his sister.  And then too many slobbery kisses to count. 
Ten months old, our baby boy.  And a gazillion prayers of thanksgiving, give or take a few.
JEB

Fine

We're fine.  Computerless, indefinitely, but fine. 

 

Can the internet keep internetting without regular glimpses of this guy?