Away

We've planned a little time away from the computer.  We'll be back soon (as long as your definition of soon is kind of open-ended).  We spend a fair amount of time arranging words and pictures on this page, and are ever so grateful that you care to have a look.  We didn't begin the blog as a way to collect an audience for Celia's story, our family's story, but at this point, we know you're there.  And I'm not sure we thank you enough. 
See you in February?
JEB

Still

It’s moments like this that hug me, and I wish for them never to let go.  I watch with glistening eyes, working hard to balance being the thankful mother of one thriving, beautiful boy with the agony of being the mother of his beautiful sister, not thriving.

Still, there they are, both beautiful, and I smile my gladness at them.  He loves to play with her hair.  “So soft," he repeats, as he rubs his back on her head and squeezes her neck.  Gently, sugar I remind him.  "Okay, sugar" he replies, maintaining his too-tight grip.  I want to hold on with such strength too.

Today he made up a story about a friend who fell down the stairs.  When he recognizes letters he describes their sounds: "The D says da da da dog."  He talks to a photograph of a family member - in a frame that he likes to knock over - admonishing the picture repeatedly "Be careful, Tommy."  When he picks up the phone, he orders "pizza, please."
I listen to him, happily, but with the wish that another were speaking too.

Still, there is a tender little voice in my house, and he says all kind of things that make my heart quietly thrill.  This week "Celie girl" and "Fank you much" are my favorite.

Fank you much for Celia's new hat, Grandma Jan! 

I find gifts in mundane living, like the joy of writing a to-do list in rainbow colors because someone left his crayons out close by.  I grow weary with nothing else to do, and am not embarrassed to admit that sometimes being a mom is lonely. Even though I am never alone.

Still, days at home are pure pleasure in snatched moments.  Late in the day, when every flat surface is covered with toys and books, art work and lunch leftovers, when chaos threatens to overwhelm, I choose to see the living at which the messes point.  The living.

Not necessarily marked by anything noteworthy or unusual, I imagine someday I’ll look back on todays and want, more than anything, their return.
JEB

And I think to myself

There are moments when the globe feels shaken, like we're just drifting around, flaky and upside down.  There are also moments when contentment is like a blanket of snow and everything feels covered with a bright, seamless beauty.   These happier moments are small, but they're wonderful.

JEB

Embracing Inertia

Following his lead we slowed down a bit this weekend, remained at rest for longer periods. 
And I was reminded that I am my favorite self when I push through the shame of inactivity.
JEB

White Out

It's white outside and somehow, snow-covered, everything seems softer and more beautiful.  At one point this afternoon Andy glanced out the window, fat flakes swirling, and said it felt like we were living inside a snow globe.

He and Tucker played "balls in the jungle" (they threw snowballs in the woods) and Celie and I snuggled inside.  Looking back, there's nothing about the day that I'd erase.
JEB

Sharing

Sharing rabbits.  And sharing new ways you can support BDSRA.  Check out the "Current Fundraisers" tab at the top of the blog.
JEB

Two Years of Life

I write with dampness in my eyes.  It's not the same sad it was two years ago, when we were given our daughter's official diagnosis, learned that she would die.  Learned that at the same time her bright comet was streaking into our universe she was already starting to arc her way back out.
There's no lie in the notion that life is not fair.  We've known she was sick twice as long as we thought she was well.  Two years ago I lived with dampness in my eyes.  I breathed with heaviness in my heart, I managed with weariness in my soul.  Two years ago, there was so much sadness that I fell away from regular feelings about regular things, into a universe with a different gravitational pull.  Since then though, she has lived, teaching me a lot about living in the process.
I am no longer in that raw place where thinking about Celia's fate makes me cry every time.  Maybe just every other time.  But thinking about her lot is still what I do while I'm doing everything else.  Now, more often than not, there is an alive feeling that the sadness brings.  Not depressed sadness, but sadness that awakens, points, focuses.  There is an exquisite feeling that gets stirred up by sorrow, that says today is for living.

I don’t mean to sound trite, but I believe that her life has been life.  Abbreviated.  Sometimes hard, sometimes humorous.  Often complicated, occasionally ridiculous.  At times painful, frequently peaceful.  Sometimes perfect, sometimes perfectly horrible.  Full of love.  Life.
JEB