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Vacuum of Pain

Posted in Many Paths Many Voices

3 days old
Monitors beeping
A rude intrusion
The backdrop to a cacophony of stimuli
Wires running
Ulraviolet light spilling
Syringes filling

Wheeled machinery
Ultrasound scans
Doctors rounds
Earmuffs on
Impromptu heart surgery
Room sectioned off
Positivity mounting
Just for a season

Three months old
We will cut open his bones
Stop his heart
Run his blood through tubes
Pump him full of others blood

Wanting to grip my husband’s hand
The words slicing through
Barely able to take them in
Hold back the tears

Try not to focus on the words
The images
Our son’s perfect body
About to be torn apart in the morning

Four months old
Short toilet break
Alarms smashing
Heart rate rising
Quick dry hands
Not likely my son
Remain calm
Is that my son?
Phone call
“You might want to come back.”
Legs propelling
Arms jerking
Thoughts spinning
Emotions exploding
Parents watching
Cubicles cut off

Skidding to a stop
Swarm of doctors and nurses
I can’t see my son!
Nurse approaches
Eyes wide, fear filling
“He went blue. Oxygen levels 17%. On oxygen.”
Hand on mouth
Inwardly collapsing
Tears overflowing
Backing, backing, backing away
Turning and spinning
Phone out
Friends! Help!
What’s wrong with my son?

9 months old
Arms jerking
Body stiffening
Eyes flare
Body thrown back
Piercing wail

Arms jerking
Body stiffening
Eyes flare
Body thrown back
Piercing wail

Something is wrong
Something is desperately, terribly wrong
Internet searching
Infantile spasms
“Sweet Jesus, no.”
Crawl into my husband’s lap
Not this too!

“I’m sorry we missed it”.
Emergency department
“We hardly ever see this.”
“Significant brain damage.”
“Untreated will die a slow and painful death.”
“Well done for finding this. It’s hard to diagnose.”

Future incomprehensible
Disability intense
Loss of communication
A void, a zombie
Shut my heart down
Long term survival
Palliative care?
Do not resuscitate?
Survival stretching
This isn’t living
Anxiety clawing
Hope crushed
Fear mounting
Struggle intensifying

© Karen Loo

Vacuum of Pain is an overview of the traumatic moments from my sons birth to 9 months old, when he was diagnosed with infantile spasms and brain damage. He also had heart surgery at 3 months old and apnoeas where he stopped breathing at 4 months old. The apnoeas and going blue was in emergency at Starship after he went unconscious on my mother also and stopped breathing for an extended period and we hit Starship in an ambulance.