A Short Time By Rebecca Kahlsdorf

I should be ready to sleep...  Like, head-hits-the-pillow-and-I'm-out-cold sleep. But too many days I have felt the prompting to start writing this down... and I'm done ignoring it. 

I finally wheedled a time frame out of the neurologist yesterday.  I had started seeing Vivian have what looked like siezures and we traveled back to Seattle Children's for an EEG (which proved me right, unfortunately).  She doesn't have a plain old mitochondrial metabolic disorder... not one that is listed on the mito website... not one that has a prognosis affixed... she has her own special breed of mito - one that looks like a handful of cases, mainly found in Amish families.  I pressed him, but in a collected, unafraid manner, not frantic or in tears. 

"How much time?  How long did the children in the case studies survive?"

"A short time."

"How long is short?  Five years?  Four?"

(Noncommittal muttering)

"Let me tell you what we're thinking, Doctor... we feel like she has two years or less."

"That sounds about right."

So, now Chadd and I disagree about what he meant.  Is that two MORE years or less?  Or two years of life or less in total?  Not that I can write it on my calendar either way when to expect to bury my daughter.  It's a number I've been desperate to hear and then push back to the farthest reaches of my memory so I can enjoy every precious moment with her before she leaves.

We weren't sure whether we wanted to medicate her for the siezures.  If her condition is incurable, why make her miserable with awful side affects?  But, the drug seems like it won't be too bad.  It even holds the hope that she may be more alert or make some advances developmentally.  So, we will try it and see if there are improvements.

We will be meeting with a special team of people at the hospital who help families of children with terminal conditions.  I don't know what they will do exactly... Chadd mentioned that our forethought about life saving measures may be premature, but the doctor said it was a good idea to have a plan before we're dealing with the shock of a medical crisis.  Cold and flu season has started and a little thing like an ear infection can spread and spiral quickly, turning into a serious situation for Vivian.  Vivian.

Vivian.

She won't go to preschool and trace over her name like James does, learning every letter of it and affixing it to her identity.

She won't have friends or play on the playground.  I won't get the chance to pack her lunches and write her notes every day the way I do for Audrey...

She won't have the chance to stun us when special ed teachers conjure out hidden talents the way they have for Charlie.

She may not even walk beside her twin brother... and he may not even remember her.

She will burn through this life a candle with a short wick.  I hope He takes her when I am not watching.  I hope I lay her down one night to sweet unending dreams.  I hope there are no polished white floors beneath her or an unfamiliar bed... or the jarring backdrop of alarms and tubes.  I hope it is silent and warm... and that the comforting smell of her mother lingers and fades so gently it is imperceptible, like sunlight at dusk... as she blazes on ahead of me into the darkness.

Mama by Rebecca Kahlsdorf

I am three years old
We are rocking in a brown recliner
a lock of your hair
between my thumb and forefinger
I like the sound the strands make
when I rub them
back and forth
twisting on
the pads of my tiny hands

Four years
blowing in your ear
to make you laugh
You sing me sad lullabies
about babies lost in the woods
and pretty horses
Your voice is soft
and close

Five years
I am in your arms
My feet dangling to your knees
You smell like White Shoulders perfume
I am safely nuzzled in your neck

Safest here

I am twenty-eight

My six year old
calms himself
by holding a pinch of skin
on my neck
between his thumb and forefinger
He blows in my ear
to make me laugh

My daughter
cries for me
having hurt herself
doing something I warned her
not to

I summon the tenderness
of your voice
folding her into my arms

I want her to be
safest here

My aching arms
have finally rocked
this precious baby to sleep

I call upon my memory
Find you in your perfect gentleness
and lay him down
slowly
peacefully
moving just the way
I imagine
you would
Mama

Just the way you would.

For James by Rebecca Kahlsdorf

In the darkness
of the early morning
I wake to your
hungry cry
leaving the warmth
of my bed

Even through
my exhaustion
it is good to see
your little face again
as you drink your fill;
stroke your plump cheek,
your dimpled fingers
wrapped around mine

I sway,
breathing in
your milky scent
and the weight
of your body
succombs
again
to sleep

It isn't difficult
to believe
you are dreaming
of heaven
behind those
feathery lashes...

New from its
gates

an angel
in my arms.

The Missing Piece by Sarah

She awoke with a start. Her dream that was so clear just seconds ago was quickly dissolving into incoherent fragments. Running through trees; being in an empty concert hall; trying to find something. Looking at the clock, she marveled that she had only been asleep a quarter of an hour. How could a dream taking place over many hours occur in just a few minutes of actual sleep time? Such a puzzle. Where did her mind go, when she dreamed, that was so disconnected from time in the real world?

There was that sound again. That sound that had awoken her. She peered into the living room and saw the cat batting futilely, trying to reach a catnip mouse. She scooted the chair from the wall to retrieve the mouse, and saw something stuck to the wall. Ah, the missing piece of the wooden airplane that had been missing for months. Without this piece, the plane would not fly straight.

She put the piece back onto the airplane and gave it a toss.

New set of random things

Here is a new set of random things:
-Quarter
-Puzzle
-Dream

Happy writing!

Road Trip by Gina

Sitting on the couch
Thoughts sweet as sugar cookies
Dreaming up a road trip
Excited voices soaring like hawks
Drifting on the breeze

Next Round:

Road Trip

Sugar Cookies

Hawk

Have a Merry Christmas!