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?



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.


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.


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.


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.



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


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.


A whole lot of almost two

Recently, Andy asked what Tuck’s first word was.  We both struggled to recall.  With Celia I kept meticulous track of things like teeth and tricks.   I have not noted every new development of Tucker’s.  Sometimes I think I can hear him growing, and I don't want to regret not having some record of milestone minutiae.
He soaks up whatever we mete out, copying sentences, mannerisms, every day tasks and things he's only seen or heard once before.  Through his imitations we see ourselves, and it is both hilarious and humbling to see our own imperfections mirrored by a toddler.
He communicates effectively, but there are still times that my translation, or telepathy, fail.  As a result, he tends to perform a three part Greek tragedy.  Other times though he really is scared, or hurt, or tired and when those tears come and his little lip trembles, my heart trembles too.
He can "jump so high" and "kick" a ball and march and hop and spin.  He's over high-fives, and likes to fist bump.  A lot.
At church on Christmas Eve he clapped after every hymn.  Near the end of the service, during candlelight Silent Night, he sang "Happy birthday," which, after some thought, kind of made sense -- he'd been to a birthday party for Aunt Vicky the week before, and there were candles and a large group of people singing.  In addition to the birthday song and the "ABCDs," Tuck sings Jingle Bells, Row Your Boat, and his old favorite, Wheels on the Bus.
Sometimes when he stacks blocks or scribbles on paper or completes nearly any ordinary task, he congratulates himself with a hearty “Good job.”
Lately he's developed the habit of saying thanks.  "Fank you, Mama" for helping him with his shoes, "Fank you, guy" to the waiter at our favorite Mexican restaurant, "Fank you, lollipop" to the teller at the bank.
Separation anxiety is easing, and when someone he loves leaves, he says “See you later” and reminds himself, periodically, "Daddy always comes back."
He likes to talk on the telephone, he has ticklish knees, and when he dirties his diaper he A) blames Aunt Kate's dog, Sebi, or B) says "Sorry guys."
In the grocery produce section, his finger points to oranges, his face as joyful as the helium balloons one aisle over.  He likes to peel oranges and bananas, and usually eats the fruit.  His current favorite foods are pizza and popsicles.
He has several books memorized -- Goodnight Moon and Now I Eat my ABCs among them.   “Chicka Boom Boom letters all fall down, read it” his summary is impressive, his request irresistible.  I read him one of my own favorites a few weeks ago and he perseverated on part of the plot all day --“Corduroy fall. Cord sad. Cord kiss,” empathy spilling from his little lips.
He's getting better at sharing.  "Here go, Colby,” he says, attaching the sticker that was on his shirt to the fur on the dog’s head.  "Here go, Celie" piling at least a dozen balls on top of her.
This week he's added a few new phrases to his repertoire.  He'll tell everyone and everything, even trucks, they're "gorgeous."  And instead of always saying "no," now he says "I don't fink so."
His routines seem rigid one moment, and then evaporate the next.  His imagination seems spectacular.  He seems to us like a miraculous little package of potential.


OH Sugar Sugar

Victory is sweet.  And so is she.


And then we played in the woods

Before the sun rose, he called for me from his crib.  “Mama get. Tucker awake,” he emphasized the first syllable instead of the second, making his awake his own.  We walked to Celia’s room to let Colby out, passing the master where he peeked in.  “Daddy working,” he said, noting an empty bed.  Down the hall he got quiet, “Shh, Celie sleeping,” he whispered, his fingers to his lips as we opened her door.  “Celie all gone. Celie RoRo’s? Celie Pa’s?”  His words led to a conversation about where his sister slept overnight.  Satisfied with her whereabouts, he switched topics.  “Come Colby. Cookies,” he invited the dog downstairs for breakfast, and patted his head while I filled the bowls.  He pulled the refrigerator door open. “Milk. Reach it.”  Prompted, he added “Please.”  He sat on my lap, under a quilt in the leather chair, and requested ‘toons.  “TV on, okay?” he implored, pressing buttons on the remote.  We watched, and snuggled, a gentle start as daylight arrived.  And then he was off, tackling the day with whole-hearted devotion and unapologetic confidence.



Overnight, one year quietly blended into the next.  I can’t decide whether I'm more relieved that last year is over or that a new year has begun.  It’s hard to get excited about the year ahead when the expectation of loss lingers, hovering over an unknown date on a new calendar.
Two thousand ten left my heart mostly full, and it will likely remain full as the pages of the coming year unfold.  There will be hard times, reality will erode my hopes to worries, but I will try to allow rough days to be what they are, view them as just a little brighter than perhaps they are, making the year the same.