Category: Poems

Brain Damage

by Karen Loo, posted in Complex medical needs, Downs Syndrome, Poems, Tough times


Standing at the kitchen bench

Surrounded by medicines and heartbreak

A future unquantified

Broken only by the constant repetition of medication and struggle


This was not the future I anticipated

It’s not even a future I want

Will my son be like this forever?


Despair settles like a cloak over my shoulders

Anguish spreads its tentacles throughout my veins

A son that doesn’t even register my presence

When I go to collect him from his cot


What happened to the world of happy children?

Who respond with smiles upon seeing their parent?

Who look up eagerly and stretch out chubby hands?


My future yawns in front of me

Cavernous and never ending

The world of disabilities

Feels like a chain around my neck


I can see no way forward

No way through

All I know is that to keep going

Is going to take everything I have.

I can honestly say that these weeks were the hardest of my life. Being told my son had infantile spasms and had already sustained “significant brain damage” – there are no words adequate to describe those emotions. Being told next by the doctor that “left untreated, he would die a slow and painful death” are words I will probably never forget. This was me staring at my younger son in his hospital cot, wondering if he would survive – or not. And if he did survive – in what capacity would that be? What kind of future did he – and we – have ahead of us now?

A Grandmother’s Sacrifice

by Karen Loo, posted in Complex medical needs, Family, Poems, Tough times

The sun rises all too soon

Gran eases out of her cramped sofa position

Braces herself to meet another day

Ready to repeat it all again

.

She gently tucks Luke into his car seat

Together they begin the daily hospital drive

Scanning the cityscape for the Sky Tower
Monuments that mark this repetitive journey

.

This trip is all too frequent

As Gran pulls in to the hospital carpark

A small window of time

Reuniting Luke with his mummy and baby brother

.
Gran carefully juggles all his food and drink
And staggers through the hospital
Loaded down with bags of washing and a little boy
Ready for the cherished moments of connection

.

She gazes down at her smaller baby grandson

Hooked up to oxygen and heart rate monitors

A little boy, straining to beat the odds

A fighter with incredible spirit

.

Life held in fragile hands

He’s too young to know

That the fight in him

Comes from the grit in her

.

Luke bounds around the stark room

A bright vision of life and uncontained energy

Gran beckons him over onto her lap

As together they scan the sky for rescue helicopters

.

The moments gone too soon

Packed back up and loaded down

They pay the daily parking fee

And struggle to beat the rising rush hour traffic

.

Together they return home

Gran starts the usual

Preparing dinner, bath time, snuggles and stories

As Gran stands in for mummy

.

In the evening Gran shifts uncomfortably on the sofa

Waiting for when Luke will appear

Tearful and missing his mummy

.

With reassuring strokes she smoothes his hair

Kisses his brow

And returns him gently to bed

.

Her phone rings, time and again

Her own husband

Separated by land, sea and a plane ride

Holding the fort back at home

They check in around the day’s events

The latest medical updates

And think about when this season might end

.

A season of sacrifice

Separation

Away from her own husband and her own home

To sustain her daughter’s world

.

She settles back into her station on the sofa

One family still just held together

A journey still unfolding

Because of a grandmother’s unwavering presence

And a grandmother’s sacrifice.

The heart rending journey of complex medical needs…

by Karen Loo, posted in Complex medical needs, Downs Syndrome, Family, Poems, Tough times

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

The morning of Cayden’s heart surgery. Holding him and crying.

.

.

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.

Goodbye… or hello?

by Karen Loo, posted in Complex medical needs, Downs Syndrome, Poems, Pregnancy

Will I get to see my precious son alive?

Am I preparing for his first hello?

Or bracing for his final goodbye?


Wrenching, terrifying thoughts

Too many times told he could die

That I may never see his bright, open eyes


Sharp, white hot pain

Arching up my back

“That looks like labour,” the obstetrician said


I know it’s too early

“Prematurity and cardiac is not a good mix,”

I’ve been told


But what can I do?

Nothing in this pregnancy

Has been in my control


Stress levels beyond measurement

I don’t doubt that’s a contributing factor

To this sudden onset of labour


Harsh grip on my thigh

Needle plunged through

Meds to swallow too


“Hopefully this will slow things down,” I’m told

“Steroids to develop his lungs

And meds to stall labour,”

Hospital tests show

This will only be a delay

Labour is imminent


How many days do I have?

Who would know?

Am I preparing for his final goodbye –

Or for his first hello?

The Day I Heard You

by Karen Loo, posted in Abortion, Downs Syndrome, Poems, Pregnancy

It’s confirmed

Downs Syndrome

Only 14 weeks pregnant

And my whole future just changed


Sitting in shock

And disbelief

Staring at a world that looks the same

But the colour palette suddenly changed


How am I to do this?

I’m not the right mother for Downs Syndrome

Couldn’t I just have a “normal” child?

The one I thought I was to be pregnant with?


No answers

No clue

No idea of how I am to do this


Then all at once – you moved

With a rhythmic tapping

From deep inside

You made your presence known


Like tiny little hiccups

Resounding like a heart beat

That even my husband could feel

With his hand pressed against my side


And suddenly, I heard you

From deep within my soul

I knew what you were trying to say


“Mum – I am here.

Downs Syndrome, they say.

Dodgy heart, they say.

But Mum – I’ve got this.


I’m a fighter, Mum.

I can do this.

Let me have my chance.

I want to LIVE.”


Immediately my heart grew firm

And resolve grew, along with you

I would give you your chance

To fight for the life

They said you may not have

To overcome the obstacles that would be in your way

If this is what you want

Then I will fight alongside you

I will do all I can

To look after you and protect you


I will stand against those who think I should abort you

Because child,

This is YOUR life

And your heart is already beating


And so I will journey with you

No matter what lies ahead

Though I pray you are miraculously healed

Of your Downs Syndrome and “dodgy heart”

I will walk the path with you

One day at a time

For your heart

Beats with mine


This poem speaks to our pre-natal NIPT DNA diagnosis of Downs Syndrome at 14 weeks. I sat on our swing chair and just internally froze, wondering how to accept, brace and recalibrate to this curveball that paired with a totally different life than I expected. The photo was taken of Cayden (which means fighter) later in the pregnancy. We named him fighter partly because of this moment – feeling him move and knowing he wanted to fight and beat the odds against him.

You were made to be

by Karen Loo, posted in Abortion, Complex medical needs, Downs Syndrome, Poems, Pregnancy

“Your baby should not be,”

He said to me.

“Any abnormality

I do not want to see.”


I disagreed.

While I didn’t know the outcome for my son

Or what struggles he may face

One thing I knew

Was this little boy –

Had infinite value


My own capacity?

My own strength and ability?

Absolutely a question mark

And not something I could pre-weigh


But this little child?

I would do what it would take

No matter how infinitely hard it was to grasp

How to raise a child with a potential disability


But one thing I knew

Is that to me –

Little boy,

You have infinite value.

And you were DEFINITELY

Made to be.
.


.
This poem was written regarding the pressure from an obstetrician to abort if any chromosomal abnormalities were found in a pre-natal diagnostic test. He believed it was black and white – if there were any abnormalities in your baby, you abort. My husband and I did not agree with his view.

100m Dash

by Karen Loo, posted in Downs Syndrome, Poems, Pregnancy

Sweat gleaming, glistening

Panting

Bending over

Struggling for breath

.

The announcer

The 100m dash is over

But a new race is about to begin

Startled, I hear my voice over the loud speaker

.

The announcer

The 100m dash is over

But a new race is about to begin

Startled, I hear my voice over the loud speaker

.

“Take your positions!”

No choice

But to walk my tired body to the new start line

“Excuse me. What race is this one?” I ask

.

“It’s a marathon, over varied terrain.

You won’t know what’s ahead of you until you get there.

Are you ready?”

Hell no!!!!!

.

Too late.

My name has been called.

I must run this race

Prepared, or not

.

The bell clangs

I start to run

Battling fears and thoughts in my head

How can I run a marathon, when I’ve just finished a sprint?

.

Who said I was good enough for this?

Who thought I had capacity for this?

Why have I been chosen

To run this race?

.

There must be some mistake

I don’t have the skill level for this

Others around me

Pushing ahead and pushing through

.

“You can do it!” They encourage

“We’ve been there! You can do this race!”

Who to believe?

Fear and anxiety jostle each other

.

But it doesn’t matter how I feel

I have a race to run.


This poem describes how I felt when I heard my baby in my second pregnancy had Downs Syndrome. I had struggled enough as a parent of my “normal” first child – I had no idea how to manage being the parent of a child with disabilities. It felt like I had struggled to run a normal 100m race, and now I had a marathon in front of me.