Category: Poems

Stay in Bed

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

Tired, so tired

The days drag on

Headaches pound behind my eyes

No matter how much I try

It’s hard just to get by

The to do list keeps growing

And while I organise to the extreme

I confess I just want to let loose and scream

It’s hard to keep going

The image I strive to maintain

Of putting my sons needs first

Is straining and starting to burst

My body can’t go on

Doing it all for everybody else;

I am strung out and stretched too far

If only I knew

How to lower the bar

It’s never ending, this role

It just doesn’t stop

My body begs to shut down and rest

But when it’s night and down I lie?

My body decides it was silly to try

And wakes me up instead.

I am constantly stressed inside

Loud noises and the tv screen

Start to vibrate round my skull

It hurts, I groan

My brain is tired and sore, I moan

But Luke still asks me maths questions

Non stop that he wants to have shown

It’s like a circus

Or a merry go round

Only the pounding thrill of anticipation

Becomes a constant drum of dread

That fight or flight mode

Never knows when to let go

I’m over it, I say

I want to get off

I’m tired of this running and activity all day

I just want to rest –

Not this endless rote of play

But life keeps going on

And while I moan and I groan

I must get up

Though things still swirl through my head

Unfortunately, I can not stay in bed.

Terror at the park

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

It grips me

This panicky, terrified feeling

Sending my son to a play date

Filled with monsters and dragons

At an indoor trampoline park

Really, it’s just young children playing

The monsters and dragons lurk through the air

Covid at its best

Winging through the space

Instinctively I want to hold my children close

Not let them go anywhere near

A place where they could catch coughs and colds

Or Covid or flu that is now here

I wish I could relax

But this fear holds me so tight

How can I keep my children safe

And put them down healthy and well to bed tonight?

I want to stop all activity

Keep my children near

But I confess they want to get out and experience life

And all those things I used to hold so dear

A playdate at McDonalds

Sounds fantastic fun for a child

Yet as an adult

Grips me with fear

I know Covid 19 is through the space

I know adults and children who cough and splutter

With no mask or regard for the safety of others

And glare at others if correction they utter

Oh I wish things were different

I must learn to co-exist with this disease

Right now I’m not sure who’s winning

Me hiding at home?

Or is Covid-19 merely laughing at me?

Rise Up

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

Rise Up

I saw a licence plate today.

It said, “Rise Up”.

And deep within my heart I knew

They were words sung to Your tune

Rise up, you say

I wonder what you mean

Is it to speak in front of others

And make our journey plain?

What is it You would say

Oh Lord of God above?

What is in your heart for me

A child that you love?

My plans towards you are good

Daughter, you say

Have no fear and follow Me

I’ll show you the way

Times are tough and times are hard

There are many who feel scarred

You have walked a journey too

And you have hope to offer through

Lift up your gaze and lift up your eyes

Look up for a new sunrise

What I do for you

I will do for others

Lift your gazes to Me

And let me shine through in you

And show the plans I have in store

For more than just you

Heart Surgery

by Karen Loo, posted in Downs Syndrome, Poems, Tough times

I stare at you lying there

And my heart squeezes painfully

Tubes bursting through your flesh

Bright red with blood

Your small eyes glued shut

I search for any flicker of movement

As I stroke your head

And whisper soft words

It is heart breaking to see you like this

Not moving

Hooked up to so many tubes and wires

I would rather shut my eyes and not look

I hate seeing the glue on your body

Where your skin got sliced open

I hate seeing the proof of your pain

Lying before me

I just want to lift you

And cuddle you close

And let soft tears fall on your cheeks

I love you so

I’m so sorry you’ve been through this

I’m so sorry your heart wasn’t whole

Yet here you live on before us

A little boy with boundless courage

Sweet and gentle

Holding on while your health stood still

Heart failure and pneumonia

Fluid on the lungs

Oxygen taps and bandages and wraps

Yet you carried on

You haven’t lost your zest

Stilled and quiet, yes

But in time I know

Your eyes will open and show

That this journey was worth it

Every tear and moment of pain

Is but a puzzle in a bigger frame

And new journeys now open before you

Life has been restored to you

With a heart newly repaired and whole

You have taught us so much

Little boy lying silently there

You are a treasure we didn’t expect

We would give anything to take your pain away

But it is through your surgery pain

That your heart now beats properly again

We would give anything we can to you

Right now all I have is words

Of how much we love and admire you

Our little heart warrior son.

When Anxiety Grips

by Karen Loo, posted in Covid, Downs Syndrome, Faith, Poems, Tough times

It grips me tightly

This anxious, tense feeling

Muscles in knots

And lungs barely breathing

I’m so used to things going wrong

I can’t imagine good will stay long

There’s always something that will upend

Any future I thought I could portend

This dizzy, sick feeling

Swirls around me

As I spin in place

Searching for things I can’t see

It lies in wait

For any moment of joy

To cast a shadow of worry

Over my sweet little boys

I can’t function

Under such agonies of worry

I miss when life was simple

And I did not feel old and harried

There’s so much going on these days

I can’t keep it straight in my mind

The reminders to keep breathing

When I’d rather scream inside

I don’t want to keep going

It makes it so hard

This jagged, fearful feeling

That sticks to me like lard

I can’t let it go

Though it frightens me so

I want to believe there’s hope

But experience has shown

If you don’t hibernate and worry

Then things will go wrong

Illnesses will jump out and capture you

And you will be strung along

I wish I could let go

Of these worries and fears

But the truth of the matter is

I’ve shed too many tears

I don’t want my sons to go

Through sickness and pain

I don’t want more hospital trips

And agonising medical drips

I just want to go

Somewhere warm and safe

Where I can let go

And trust that I’ll know

That everything will be okay

And even if it’s not

That I can get through just one more day

With Him at my side

Showing me the way

I don’t know what tomorrow holds

And I admit I’m too freaked to know

What curves and rides are ahead

But if I can only take a deep breath

And trade my fears and anxieties

Then maybe somehow, one day –

I can find faith instead.

Written in June 2022 a matter of weeks before my son caught Covid from respite.

If You Follow

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

“Your pregnant baby boy has Down Syndrome,”
The obstetrician said
Down Syndrome?
My heart sank.

A world full of brilliant colours
Turned grim gray
A future I was no longer sure I wanted
Captured my breath and dragged down my heart

Down Syndrome?
A world of disability and misunderstanding?
Who will my son be?
What’s more – who does that make me?

Will the other mums see the real me?
Or will I be judged
Based on my son’s disability?

I didn’t want a life of pain and struggle
All I’d wanted was a little baby girl
Cosy in pink and eager to snuggle

God I can understand – sort of –
That you’ve given us a second boy
But God –
Why oh why
Did You not hear my inward cry?

Age 35 is when you’re meant to run the risk
Of medical issues and things you’d rather miss
I’d still some years to go
Why did you allow this sorrow?

My heart breaks, oh God
This isn’t what I wanted
I just wanted a healthy, normal child

God why oh why
Did You not hear my cry?

“You will see,”
He said to me.
“A world you would not know
If you did not follow

It’s a world full of bright greens
Flush with things you’ve never seen
A world full of new starts
In journeys and matters of the heart

It’s not what you thought you’d know
But then this is only discovered
If you follow

A world few people see
That has it’s roots in Me
It’s not a world many know
But stay with Me and I will show

That this journey has many things to learn
If you will only choose to follow.”

A Fresh New Tomorrow

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

You told me it would be OK

I trusted you

But I didn’t see

The path you had ahead for me
.

Had I seen even a glimpse 

Of the heartache ahead

I would have turned and run

And not stayed instead
.

I had no idea

Of the perils ahead

The anguish, the isolation 

The misunderstanding 
.

I didn’t know

I would fight

Almost to the end 

For my son’s life
.

I didn’t know I would cry out to you

Too many times

On the motorway 

Driving to hospital
.

It will be OK, you said. 

I’ve got you. 

Many times I threw questions at you

And hatred and blank stares
.

I shut down my heart to you

Because it was too hard

And I felt abandoned by you
.

I thought being held

Meant sunshine and daisies 

Not nightmares and a whole lot of crazies
.

I still don’t know

How to relax in the rainbow

How to relax in the promise
.

That though I walk through the valley of the shadow of death

Your rod and your staff comfort me

I will fear no evil

For you are with me.
.
 

I’m starting to learn

That it will be OK

Doesn’t mean a life of ease

And simple answers
.

But rather a grit

A determination 

That despite the odds 

Giving up is not an option
.

So God I ask you

To remove the pain, the memories

Of moments I’d rather forget

Of heartbreak and anguish 
.

When I questioned your light

Your kindness

Your goodwill

And even your existence
.

I ask you God 

To bring good out of what was meant for evil

To bring healing from where wounds have struck

To bring hope instead of mourning 
.

I pray for a new day

Where light shines forth

And good conquers all

Where those who sow in tears

Will reap with songs of joy
.

Because only those who have walked such pain know

How deep the depths of sorrows go

And how very much they need

A fresh new tomorrow.
.

This poem speaks to the season of Cayden’s brain damage. It was the most challenging season I have ever walked. We didn’t know if our son would ever engage with us again, yet we had to faithfully continue to look after him, feed him, give him medicines, be up 12 times a night with him – not knowing if it would ever change and if we could sustain that kind of life long term. It raised a lot of faith questions for me.
After coming through that season, I became desperate to emotionally separate from it. To be able to let those moments go and find a fresh, new tomorrow – one that is not weighted down by the agonising memories of yesterday.

It’s Not You I See

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

It’s not you I see

This face staring back at me

It’s not a face I know

Reflected in the hospital window

.

Times have changed and seasons have passed

The hospital corridors have left their mark

Gone are the frivolous smiles and laughs

Inside instead there is a damaged heart

.

I thought I knew

Brokenness and pain

That was before I had a son again

Who would spend too many nights

In these drab walls

As I watched my laughter fade and my fears mount

.

That’s what it does to you

Isolated within a hospital worldview

Gone are the bigger scenes

The family holidays, the big picture things

.

Everything drills down to one simple thing

What do the monitors read and what do the doctors think?

.

It’s hard to feel like a person

In your shrunken room

Knowing that doctors and others

Will be arriving soon

.

It takes time to recover

For not just your son

For your heart too

Has seen and been through a ton

.

Your hair now shows greys

And you are quick to fright

Your adrenal glands

Have had to constantly fight

.

You’ve been on stress mode

For far too long

Riding the waves

Of the many unknowns

.

You wish you could recover

The person you once were

Is she gone forever?

You hope she will return

.

I would give anything to smile

Without shadows filtering through

Colouring the light

With which I see through

.

It has been a hard road

That’s not something I can deny

But I hope that one day soon

Will reveal a new light

.

I look forward to the day

Joy and surprise find their way

Back into my life

Gone with the lifeless, drab greys

And putting full colour back on display

.

Too much has happened 

In this season just past

To wash away quickly

Though I’d like it to pass

.

I suppose it’s no surprise then to know

That there are those who look at my wedding photos

And have no idea

That the face that they see

Once upon a time

Really was me. 

Luke: What you didn’t know

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

You were too young to understand

The world into which you were thrust

You were used to holding Mummy’s hand

And having her full attention

.

The arrival of a second child

Was not something you knew

And the process

Was not something for which we could have prepared you

.

You didn’t understand the constant tears

The medical appointments

The bleeding at 18 weeks and the regular fears

And that was just the pregnancy!

.

You saw your Mummy doubled over in pain

And you helped rub her back

At 36 weeks as labour began

.

You didn’t know you were saying goodbye for many days;

That this little brother would take away your Mummy

You didn’t know why hospital became a second home

That Mummy seemed to always reside at

.

We couldn’t explain medical terms to you

Things like special needs and disabilities

You didn’t know what heart surgery meant

Or that we used to count your brother’s every breath

.

But what you NEED to know

Is that despite all these things

You were never far from Mummy’s heart

And her thoughts were always for you

.

Her heart was with you

As you went to bed at night

Tucked in by your loving Gran

Her thoughts were with you

As she drove to hospital

And unpacked yet again

.

She cried for you

Many nights

Wondering if you were okay

And what she could do to help you

.

The world into which you were thrust

Was not a fair one

Nor was it just

.

Mummy had no idea having a second child

Would come with so much unexpected pain

.

But what you need to know

Is that your Mummy loves both her boys dearly

And will always protect you and love you

Some things Mummy can’t control

Even though she will do her best

To tuck you close and wipe away your pain

.

But one thing Mummy can control

Is that for each of her boys,

She will always, desperately love you

And hold you in her heart

And never let you go.

.

Your Mummy loves you

And is sorry your life began with so much struggle

She would change it if she could

And take “special needs” away from our vocabulary

.

But Mummy just has to trust

That God has a plan

Even though she can’t see it

And believe that we are just the family

For your little brother too,

Just as we are the right family,

Chosen for you.

Forbidden Tears

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

It comes quickly, silently

In moments when I’m unprepared

This deep, gulping sense

That there are a thousand tears

Curled up and mashed together deep inside

.

They are forbidden tears

Too little time to give them any notice.

Too little energy

.

If I had capacity

I might look at them one day

Bring them into the light

One by one

And ask which moment it reflected

.

Was it my sinking dreams

That my baby had Downs Syndrome?

Was it my fear he would never live?

Was it one of the moments when he stopped breathing

Or when they put his heart on pause for heart surgery?

.

Was it when I saw other people’s healthy children

Reaching all their normal milestones?

Or was it when my son no longer looked at me

And I had to come to terms

With diagnoses like brain damage and epilepsy?

.

Was it looking at my older son at night

Thinking of how little I had to give

Or was it when I was packing yet another hospital bag?

Was it an uncontained moment

Of wild emotions and swirling rage?

When I had passed all ability to filter anything

And I truly wondered if my baby’s journey

Would cost my own?

.

Which of these moments

Did these forbidden tears capture?

.

They stand as markers

These silent tears

Prisms of repressed emotions and agonies

Of colliding hopes, dreams and crushed realities

.

One day I’ll look at them

And honour each moment they could not be shed

And I will remind myself

That while they could not be shed then

They are now collections of moments

That have passed

Memories that no longer have power

.

One day I hope to be able

To let those tears flow

And then to be able

To let those moments go.