The heart rending journey of complex medical needs…

Vacuum of pain

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

In hospital

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

Panicking

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!

Crying

Crying

Crying

Crying

What’s wrong with my son?

.

.

9 months old

Arms jerking

Body stiffening

Eyes flare

Body thrown back

Piercing wail

Repeat

.

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

Sob

Not this too!

.

Doctors

“I’m sorry we missed it”.

Emergency department

“We hardly ever see this.”

EEG’s.

“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

Incomprehensible

Long term survival

Palliative care?

Do not resuscitate?

Survival stretching

This isn’t living

Anxiety clawing

Hope crushed

Fear mounting

Struggle intensifying.