Rinse and Repeat

Celia -- Poppy's big red tub -- winter 2008

 Tucker -- Poppy's big red tub -- winter 2010

I don't have very many words right now.  But I do have pictures.  I'm afraid I'm turning in to one of those moms who looks at a dozen photos that are only marginally different and likes them so much she feels compelled to share them all anyway.  Forgive me.


Life is but a dream

Our dreams for our daughter slumbered.  And then they died.
And so will she.
BDSRA has issued a $25,000 research challenge, through December 31, thanks to the generosity of the BDSRA Board of Directors and various family foundations.  Over the next three days, all donations will be matched dollar for dollar.
There are also several days left to stock up on Cardthartic greeting cards with the promo code "Celia."  Twenty percent of each purchase will go to BDSRA's efforts to improve and prolong a stricken child's life.

Your contribution could help a dream come true.



He loves the snow.
And we love him.




Like A Candle

A Christmas candle is a lovely thing; it makes no noise at all,
but softly gives itself away; while quite unselfish, it grows small.
-Eva K Logue



"What does Mommy say?" has been part of his performance for months.  The cow says "moo."  The car says "beep."  The camel says... well, I'm not sure how to spell what the camel says.  And Mommy says "I love you."  He's been able to say the words for awhile, responding to our queries and reciprocating our offerings.  But this week he started sharing them unsolicited, I love you. 
I hear his heart in every syllable.  And, oh, is it ever mutual.



If last month was supposed to be about gratitude, this month feels like it should be about remembering.  I spend purposeful time doing it, afraid the memories might shift if I let them get too far.  But my idle thoughts always land on her.  Wondering what could have been, I realize I can’t forget something I never knew.  So I go back to what I do know.  My soul feels quiet remembering her.
Celie B.  First Christmas, 2007

She made kazoo noises -for hours- at cousin Judd in the back of a rental van on a Florida freeway.  She was five months old and it was her first, and only, trip to the beach.  During that vacation, when she wasn't making kazoo noises, she was squealing with glee.

She crawled in a circle through the rooms on our main floor.  Both of our moms had told us, when we'd been searching for our first home, to look for place with a path for kids to traverse, and her rounds proved their advice sound.  The first time she crawled, I'd used Cheerios as motivation.  Andy left work early so he could witness her new development, and her going was slow enough that part of the trail still lay ahead by the time he got home. 

She learned to drink through a straw when we were at Circuit City shopping for a portable DVD player for a long car ride to Iowa.  She wasn't yet a year old and we wandered the store taking turns hunched over, her fingers gripping ours as she toddled and tasted.  It was a Planet Smoothie Screamsicle shake.  And she was in love at first sip.

She was, by turns, introverted and extroverted.  She played quietly, processed information, demonstrated restraint.  She was also energized by the world, hollering "hello" to strangers and waving wildly at cars and squirrels.
She was perfect.  Everything was perfect.  Until it wasn't.

I record these things because they come to mind.  They’re just simple memories.  But I don’t want to forget.





Fa La La Lovely

Lovely, and loved.



Mommy's BALLS!
Santa's BALLS!
One, two, six BALLS!
Nothing says EXCITEMENT like the caps lock key.  Or like a toddler who tends to spend most of the time living at the top of his lungs.
It takes so little to excite someone so little.  When does that part of a child get lost?



What is it?

When people ask about her disease, there are so many things I want to say.  It’s shit.  It’s interminable medications and sleepless nights.  It’s watching your child die, the possibility of death every day.  It's a parent heart that pounds like a dryer full of wet tennis shoes.  It’s a long list of nevers.  It's terror and desperation and anger, days spent weeping from an internal faucet.  It's not like other families, who hope to keep their kids out of kitchen cabinets, out of trouble, out of whatever, it's just wishing you could keep yours out of the ground.  It's ridiculous amounts of suck.
It is also kind people and sweet words, bags full of food and mouths full of condolences.  It's knowing we are loved, and seeing it in action.  It's rich, unexpected delights, gifts of strength, perspective and hope along the way.  It's the ability to blow off the dust and clear the clutter, to know this life is a lovely one, it's a constant reminder to resist complaints about the tediousness of minor annoyances.  It's an ever-growing chorus of prayers.  It's the slow, steady promise of science.
We spent the day with other families who are affected by Batten Disease, an afternoon in the presence of so many who know precisely what it is.  
Today it was simply a good excuse to dress up and smile.


Not Me

"Pick up me," he requests. "Me hold it," he demands. "Me color," he announces. He doesn't yet have his pronouns straight, but his egocentric labeling arrived right on time.
He has no idea that what's inside his head is different than what’s inside mine. If he likes peas, I should too. If he wants to play ball, the dog should too. If he wants to watch 'toons, Daddy should too.
He is too vernal to discern verbal order or to apply proper function words.  It may be too early for him to realize there are other minds, other opinions.  Is he, though, too young to know that anything’s wrong?
Maybe he doesn't know, but what I know is that when he's with her he doesn't seem to think about himself quite as much.


Darn Tough



Something happens to my hopeful heart when I spy him doing normal things.  He creates a great and necessary distraction from the unthinkable.  He allows me to begin to think ahead again.
I notice his signals of awe and I sense my own stirrings of hope.  As much as it feels good to think positively about tomorrow, I don't want today's small moments to become buried in my subconscious, under the relentless wrath of her disease and the hurried pace of his toddlerhood. 
Holding good intentions for the future, I wonder whether we can ensure its betterness by making good now.





If it stretches my tolerance for mess, he'll play for inordinate lengths of time.
If it requires my patience and supervision, he'll find new ways to assert his independence.
If it offends my aesthetic sensibilities, it is his favorite.
If he is happy, so am I.


Sleeping Beauty

Nap time, and the only sign of life is the rise and fall of her ribcage.  A malady so malevolent no kiss can cure, the truth comes both instantly and with a slow, steady seep.  I ignore it, instead gather up this moment - close my eyes, take a deep breath and hold it in, an olfactory snapshot.  As the room fills with the silver of the gloaming I match my breathing to hers, until the in and out becomes less oxygen instinct and more murmured prayer.
To abide with your child in her gradual death is to abide with yourself in part of your own.