The Sky Was A Painting

I was reading one of my favorite bloggers today, her daughter so similar to my own CB that I feel like the four of us are kindred spirits.

She wrote of bearing witness to nearly two decades of seizures, caring for a child who never grows up and enduring the weight of all that comes with it.  Yet, it is the changing of the soaked bed sheets again and again that nearly undoes her. 

Yup, that pretty much says it all.

For all the things we endure unflinchingly, it's often those little things that completely unravel us.

When I walked by my window at twilight, I was completely disarmed. The domed sky a painting, larger than life, more vivid and surreal than these photo can even suggest.

And it struck me that while it's often the smallest of things that undo us, it's sometimes the smallest of things that save us. 

the moments lost

there is enough time for the laundry and the dishes
for the sheets to be changed and the
dinner to burn

enough time for the next cup of tea
the keyboard waiting
the words left untyped
enough time for the store
the car wash
the bank

but this time with you
will drag like forever and be lost
in an instant

my lids will shut and that moment
you asked me tear myself away
will be gone
and you will be a grown woman
with her own babies
and I will cry when I hear cat stevens croon
about cats in the cradle
and wish I had said yes to that game of yahtzee
or that walk or that
cuddle on the couch

but I was too busy
too busy wiping the counters
sweeping the dust
writing the word
folding the towels
too busy to hold you

soon the day will come when you no longer
fit neatly into the space of my lap
it will be the day I finally free my schedule of all these things
that keep me whirling like a dervish

I will sit down to hold you
but you will no longer fit
and the floors and dishes will be clean
the tea hot
the house quiet

and all that time that seemed like enough
will stretch out like forever and fit on a pin
like a white page filled with
the moments
lost

tHERsDay: Sitting Vigil

During the visit to my grandmother's old farm house, 

a black barn cat sat with CB for an hour under a hundred year old tree, 

transfixed  by her fancy bead twirling,  

playfully batting at them from time to time.

Though CB occasionally shoved him away,

the cat remained.

Sitting vigil.

As CB's seizure activity spikes again I find myself in the familiar, helpless position of bearing witness. Clocking the seconds as she thrashes about. 

In the seizure's aftermath, all I can do is sit quietly on her bedroom floor 

with the stillness of a praying mantis mimicking a leaf.    

This period of sitting and watching 

until I'm certain she is asleep and will not lapse into another seizure 

has always felt so passive to me.  

Due to her tendency to flip into a violent, post-ictal psychosis 

I refrain from even touching her or speaking following a seizure. 

I simply sit vigil.

A vigil, I discovered, is a period of intentional wakefulness; 

a block of time set aside for contemplation and watchfulness.  

"Vigil" is derived from the Middle English vigile, 

which means "devotional watching."  

The Latin vigil, translates as "awake."  

It brought me comfort to know that the feeling of helplessness and passivity 

when surrounded by darkness, listening for 

the restoration of normal breathing patterns in my little girl, 

is actually far from a helpless act.  

There are many different types of vigils: 

the religious 

a form of protest

respect for the deceased or

a way to raise community awareness.

Whatever the type, it is a body and soul in action

not at rest.

Like the mountain pose in yoga, 

even in a simple, quiet stance

all the senses of the body are engaged.

A mother's vigil is nothing like sitting idly by. 

Every cell in her body 

wakeful

watchful

devoted. 

All That I Need To Hold, I Can Carry

I went to retrieve her from her bedroom

for we needed to pick up my 6 year old at her play date.

We needed to leave.

But I find her limp, sprawled on her bed.

I find her in a pool of her own saliva.

I find her post-ictal which for those

not "in the know"

is a post-seizure state.

I know she will be unable to walk.

I sit her up to watch her flop,

her head lolls back like a Pez dispenser.

It's a fresh seizure

which occurred at some point

while I was downstairs,

oblivious

making the alfredo sauce for dinner

chatting with the 2 little ones

scampering across my toes

while my eldest lay alone

 fireworks blasting through her gray matter.

We need to leave

or I'd let her rest.

I'd rather not move her now

but life has a weird little tendency to

move right along

ignoring the minor and major catastrophes

it just keeps marching.

She's in and out of petit mal seizures,

like aftershocks following a large quake.

I will get her down the stairs and out to the car.

I will get her down the stairs and out to the car.

My mantra.

Alone, I will get her down and out to the car

because that's what mothers do. 

They just keep going.

They do what needs to be done

because it needs to be done

and who else will do it?

It needs to be done.

After attempts to have her walk by supporting her weight

fail

I try to carry her.

All 5 feet and 90 pounds of her.

We make it to the stairs and I have to set her down.

We both fold onto the floor.

I can't carry her down the stairs. 

Her legs are too long.

I'm not strong enough.

We sit on the landing, she crumbles into my lap.

I fight off my own crumbling. 

"Okay, buddy, we can do this, we're going to do this, I got you... we'll do it together... you and me together, just like always buddy.... I'm so sorry I have to take you out... I'm so sorry... I know you need to sleep..." 

I talk on and on to the mass of hair on the back of her head

and we slide down each step

she, half on my lap

as we slide down

each step

slowly

carefully

until

we stop on the landing

and I think maybe I should call my husband

maybe I should call the mother of the girl who Pink is playing with

and tell her I need help.

Ask her to wait.

Maybe my husband can get home or get Pink.

My other girls are waiting for me in the car.

I am doubting myself

I am flooding up with worry

and helplessness.

Because once I tell myself

"I can't do this"

then I can't.

I'm sweating.

My knee hurts.

No.

This is not impossible,

it's just not ideal.

But what, I ask, in life

is ideal?

 

I will do it.

I'm stronger than I think.

So we continue our fragile descent,

sliding on our bottoms

one tedious step at a time.

Sometimes it shows character to

ask for help.

But sometimes, you find the strength you never thought you'd have

when you don't call out to be rescued.

At that moment I needed to  know

that of all the things I can't do for her,

this I can.

We make it to the last step.

I gather her into my arms

like I did when she was a seizing infant.

I'm surprised that

she's not as heavy as I thought she'd be.

So I carry her with less effort than I imagined.
We make it to the car.
We make it.

Perhaps I'm stronger than I believed.

Perhaps even when I'm by myself,
I'm never truly alone.

Or perhaps a child never feels too heavy

for a mother's arms.

tHERsDay

Her name conjured up images

of friends and long walks

of wholes, not pieces

of smiling photos in polka dotted frames

and music played too loud

long talks about nothing and everything

childhood hugs followed by

cheerleading camp and bouts of angst

of promises kept and broken

So that is what I named her

because it sounded like a bell

ringing in the darkness

I still hear it faintly

slicing through

her silence