what did you say

by thankfeldenkrais

I’m nauseous with fear,
Heart in my throat,
Waiting room piled with children of varying compromises.
It smells ripe with sickness,
Confronting.
I hang my head in shelter.
Ignorant,
Frightened,
Unbearable.

How did we get here,
How did it all go so wrong?
Surely we don’t belong here.
My hand is squeezed in loving reassurance and mutual displacement.
It’s just not enough, and we both know it.
Silently we wait,
For there are no more words left of comfort.

In a room of imperfections,
I can’t grasp how in his seeming perfection,
He fits in.
Ten fingers, ten toes, dark sweep of hair and mesmerising eyes,
No signs of fault.
Just beauty.
A babe in mummy’s arms.

When we are finally plucked from the bunch,
I’m shaking with nerves.
Never again to be at ease in a closed consult room,
Too many bad things have been said in rooms just like this.

Quietly we listen to the neurologist,
Nodding and shaking heads appropriately,
Whispering answers uneasily, without conviction.

On screen for the second time,
It’s pointed out to us.
Still there,
Still seemingly unobtrusive,
Yet marked atrophy,
Volume loss,
Global thinning,
My ears are ringing.
Be comforted they reassure,
No diffusion abnormality of ongoing injury.

But he looks fine I beg,
Apparently,
Not if you know what to look for.

Extreme heightened reflexive response,
Clenched fists,
Stiff upper and lower limbs,
Head lag,
Feet gripping as if holding on for dear life.

Your son has Cerebral Palsy.

What did you say?
I’m in a state of panic,
What does that even mean,
Stop saying that, stop stop,
Please just stop.
I came here for you to tell me everything was now OK.

Significant,
Entire body,
Our diagnosis,
Spastic Quadriplegic Cerebral Palsy. 

I can’t take anymore.
Words I do not understand,
And fight off from absorbing.

I’m cold with regret,
Sickened with guilt,
I hate everyone and everything.

Time will tell, they say.

Early intervention is key

Where does one even begin?

And so we drive home.
The news breaking us down,
Phone calls to family,
Barely able to say the words,
Sobs stuck thick in my throat.
The other end of the line also speechless,
Everyone silenced by their own grief.

No one knows what to say or do.

I stare out the window,
Just take me home.

crying

Isaac also crying all the way,
As if he too just received the bad news.

The End of chapter two

Advertisements