Category: Family

Relationships in the Trenches

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

Two friends confided in me within the same week. Both planned to leave their husbands.

I was devastated.

Both of their marriages had endured circumstances known to break down relationships. Both faced an uphill battle to hold on to their love and to each other.

Our marriage falls under a similar category. We face a daily load of stress, disasters and medical dramas that quickly erode any lingering honeymoon lovey-dovey feelings.

We face the same temptations too. The thoughts that maybe it’s not our circumstances making marriage challenging; maybe it was the wrong choice – at the start. Maybe we married the wrong PERSON.

I think all of us struggle with those thoughts at times, or during certain seasons. (If you haven’t, I want to know your secret – or whether you’ve been married for more than a day!)

The question is where we go with those questions.

I realised through my own journey that I had to flip the lens through which I saw life. I have an amazing husband. He has stood by US (not just me as an individual) but US as a unit and a family. He is there helping to clean up vomit. He is there at hospital losing sleep, helping me with Cayden. He is there bringing me medicine if I have become unwell. He is there, holding both his sons, giving them cuddles and taking them for bike rides.

Instead of seeing the issues in our relationship, I needed to see what an amazing man I had married. To appreciate his faithfulness, commitment, provision and care through his acts of service. Maybe acts of service isn’t my love language (See Gary Chapman’s “Five Love Languages” book) but… did that make our relationship any less valuable? Just because acts of service didn’t resonate for me as something fuelling my love tank, did that devalue the effort and love my husband was seeking to demonstrate?

I may not have received those gestures as beautiful expressions of love but actually – how is that his fault? His *intention* was to show love and care towards me. If in that season in hospital he had spent time giving me a hug and giving me time to decompress and verbalise my extreme stress, I would have felt emotionally comforted and able to calm down. That sort of expression would have drawn me to my husband despite the stress. But I assumed something was wrong in our relationship because that did not feature in that season. Too much of that period was staring at each other through the corridors of hospitals lined with extreme illness and anxiety.

But I had to mature through this season of pain and look beyond how I received things to how he was *intending* things.

When the stress of your world starts to feel overwhelming and to cloud your judgement, it’s important to realise it may be another of those… seasons.

I’ll openly confess to hating that. I would far rather everything be rosy and beautiful all of the time.

But that’s not reality, is it?

To get us through some of the toughest seasons we could have imagined, I had to rely on all that I learnt in my psychology degree at university. Those that reported low levels of marital satisfaction that STAYED with their partner – reported far higher levels of happiness five years later. Something about sticking together gave their relationship a foundation of faithfulness that nurtured their ongoing connection.

I also learnt about taking a “long view”. If you can persevere through a season that has you blind to the qualities you initially loved in your partner – if you can weather the storm and wait to come out the other side for greater visibility and more clarity of mind – you will be able to breathe and actually have more perspective.

It’s a little like flying in a plane. When you encounter a strong storm and you’re in the midst of turbulence – it is not the time to pull the emergency eject button and exit the plane. That jeopardises all of you. Rather my advice would be to hang tight through the storm – strap everything down you can, know that your stress levels are really high, and give yourself time to come out the other side before you reassess.

Stress is a killer. Fighting for the life of someone you love; when you live each day to the next not knowing if your child will live; when you spend moments subconsciously holding your own breath because you’re counting the breaths of another – the stress and fear can eat you up from the inside out. When you are internally coiled so tight your muscles feel like concrete it is almost impossible to find the right tone to reach your partner (who is also experiencing extreme stress).

When the stress of our situation threatened to consume me, I imagined what life looked like months down the track if I chose to separate. I considered the undeserved hurt my partner would feel. I imagined the confusion my children would feel. I thought about the awkwardness of maintaining a connection with someone who used to be your lover and friend but with whom you were now fighting custody battles.

I thought about the struggles to provide a stable home on a single mother’s income. I considered how I would have even less time to devote to my children and would be even MORE stressed in that scenario.

How did that separation scenario benefit… anyone?

Surely it was better to find ways to improve our relationship and GROW through this season of stress? (Or simply just survive it?)

It is impossible to make sane decisions when your emotions are haywire, you’re sleep deprived or you are struggling under any kind of load that is too heavy. That’s when you have to back off, recognise the situation for what it is, and give it time.

Those are the moments it takes grit to survive. It takes grit to stay together and say, “Tomorrow may actually not be any better. One day it might be. But I’m going to stay – ANYWAY.”

It takes tenacity to look at your partner, recognise the strain you are both under, and realise they are not your enemy. Your circumstances or your stressors are what is placing your relationship under incredible strain. Experiencing stress does not mean it is time to leave your partner.

It means it is time to reach out for help. If no help comes – reach out again. Find a counsellor. Talk to family and friends. Listen to podcasts. Go to your library and get out books on how to sustain your marriage. Reach out to a pastor. There are options for those willing to look for them.

(Please note I am not talking about situations of abuse, adultery or other scenarios like addiction. I am talking about your average marriage that comes under significant strain.)

Life isn’t just about our happiness. It is not about taking what we want, without seeing the consequences in the lives and families of others. 

It is about looking at the cost of the decisions we make on our children. It is looking at our legacy and where our choices in the moment could lead us.

There is power in our choices.

When the chips are down, we have a choice to weather the season. We can take a “long view” – choose to look beyond the stress of the moment (or day, or week, or month, or year) and picture where our relationship could be years from now if we have invested in staying together and seeing it flourish. That sort of choice sows into our marriage and future by demonstrating commitment and perseverance.

Maybe i­­­n some seasons it’s not all joy and happy moments. Maybe it’s about doing battle in the trenches; keeping our marriages and faith intact while assaulted from all sides.

Maybe it’s not always the bright, glowing smiles between husband and wife sitting across from each other at a romantic candlelight dinner – instead it’s the hands that are weathered and worn, clasped tight and still… holding on.

That’s a legacy worth fighting for and that’s a commitment worth celebrating.

Building Resilience

by Karen Loo, posted in Complex medical needs, Covid, Downs Syndrome, Faith, Family, Marriage, Tough times, Wellbeing

So… recently I ended up in hospital myself. After numerous bouts of illness (including Covid, where Cayden caught it from a medical facility and passed it on to the rest of us) my body just didn’t have the resilience it needed to bounce back. I ended up with non stop chest pain for 36 hours, heart inflammation and an increased risk of a blood clot.

Parenting two children, one with complex medical needs, takes it out of you. It is a non-stop, exhausting journey. I was used to a body that could rise above all challenges and push through. As one GP said, I was “burning the candle at both ends – and in the middle.” I could be up at 3am with Cayden heating a bottle, and I would wash a frying pan at the same time because three minutes waiting for a bottle to heat was too many minutes to waste. For probably a year, my goal was simply to have time to shower and get breakfast every day. It was only recently I consistently manage that. I used to say if I had time to moisturise my face, it was because I was on holiday.

Pushing through was my norm. Being utterly exhausted, but still pushing myself up from the couch to *just keep going* was my motto. Cayden wasn’t going to learn how to eat or drink for himself, or recover from brain damage, if I just sat back and did nothing. There wasn’t time for that.

Ending up in hospital myself was a wake up call.

Suddenly my body wasn’t capable of just “pushing through”. Climbing our stairs was enough to bring on the chest pain and have me needing to sit to rest. While my symptoms were mild, I was looking at a couple of months of recovery.

I really struggled. My dreams of pushing through winter so I could take the kids out biking again in warmer months, or taking them to playgrounds and beaches, were dissipating before me. My body wasn’t up to it. Enjoying fresh, healthy meals I had made became a memory for my husband as for a few weeks we relied on meals given by our church, or made by kind and caring family and friends.

I realised I needed to change some things. And I realised no one else was going to change them for me.

I started to take control back. For years my social worker had told me “we were a family of four; where each person has EQUAL value.” I could not keep putting my own needs at the bottom of the pile.

The truth is, I knew I was heading for a crash. But I honestly saw no way around it. I could not do all the appointments for Cayden with ten specialists, put into practice innumerable goals and strategies and ideas at home – while still maintaining a home and having a bright older child to look after and a marriage to keep together  – without eventually crashing. My subconscious goal had just been to get Cayden as far forward as I could, before I crashed!

So now here I was. With a body that was past exhausted, that was deficient in a number of areas, and needed serious TLC.

My husband graciously gave me a lot of time to rest while we went on holiday for a week. I used that time to try and re-train my body in how to sleep. I had been dealing with insomnia since having Cayden. I was always anxious and feeling I needed to be alert and awake through the night hours for whatever medical event or emergency could happen. It was really hard to try and unpack that and try and release my anxiety in order to sleep. But I made slow progress.

I sourced a sleep app to help me.

I saw a naturopath for more herbal support and supplements.

Despite my lack of energy, I realised I needed to substantially invest in replenishing and restoring my body. So I started spending 20 minutes a day preparing myself a salad chock full of goodness (for those interested – spinach or kale with cherry tomatoes, cucumber, capsicum, green beans, avocado, sunflower seeds, almonds, a boiled egg and some Japanese mayo). I made one every day and varied the protein.

Slowly, enough energy returned for me to take my children on short 2km bike rides. Those moments were beautiful. Being on holiday and able to spend time looking at beautiful scenery as we biked was glorious. My soul was being refreshed as I also looked after my body.

Fast forward a month or so. I have learned some things.

Even while on holiday, my son Luke had bronchitis. A few days after we got back, Cayden was in hospital with pneumonia. The stress was huge as we could not get Cayden to drink or take medicine. Both the hospital staff and myself were worried about trying to do an IV or NG tube for Cayden to rehydrate him. He was panicking and is so strong it would have taken a number of staff to hold him down and force him to have either medical intervention, and he is determined enough to rip everything straight back out. We were all anxious and worried about how to get him through.

Those were stressful days, again, for my husband and I. I asked for prayer from all our friends and at that point things started to shift. But it was hard.

In the two weeks since then, Cayden recovered, and then came down the next weekend with fevers and vomiting. A few days after that, Luke had a fever.

A week later, Luke has a cough and sniffles and I am fighting off a cold.

The amount of sickness we deal with is relentless.

But I’m learning. I’m learning to take sickness in my stride. I’m learning to keep trying to look after myself in the midst of it. I’m learning we can “be sick and do things anyway”.

I’m learning if we let sickness and disabilities define us, we’ll never do anything. So while Luke had bronchitis – we still drove away on holiday. Did Cayden vomit in the car and all over me? Yep. Was it pleasant? Nope. Did we have a good time regardless? Absolutely.

Did we go camping at short notice with no toilet, shower or heating? Yep. Did we manage the challenges of the environment and still have a great time? Definitely.

Restoring our souls in nature and having positive family time has been an utter gift. We need it. We need to offset the past few years of non stop medical dramas and the daily grind of bottle feeding and spoon feeding Cayden.

It’s been a breath of fresh air across our souls. And one I am determined to keep doing.

Here’s to living and building resilience, despite the challenges.

Survivors Together

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

Recently I have felt strung out. By strung out, I mean feeling like I have been plugged into an electric socket… long term. Like every part of me is frazzled and wires are short circuiting. A medical term for this would be “adrenal fatigue” or more commonly “burn out”.

On one of these days, getting ready for bed, I stood at our bathroom sink and just stopped. My hands were on the sink and I drooped against the sink in exhaustion.  It was almost like feeling catatonic. Just standing at the sink, and staring meaninglessly. Feeling the exhaustion and yet wired state of my body combined through every pore of my body.

My husband saw. He kindly came over and started kneading the back of my neck and my shoulders.

Eventually, I turned to look at him. What I saw in his eyes surprised me. They were a reflection of my own.

I saw his tiredness, his exhaustion, his efforts to keep it all together.

So I moved to hug him. We stood there together, holding each other, for minutes. Neither of us said anything. There was no humour; no light hearted comments.

This was a recognition of what we were going through, together. That embrace said volumes.

It acknowledged equally that we were both under stress. It communicated that we were on the same team, though we felt and experienced the stress differently. It underlined our commitment to each other. Neither of us were giving up or walking out on our challenges.

That long hug showed me so much. The positive of our situation is that after three years, we are starting to pull together. We are starting to see the situation through similar lens. There was a sense of emotional intimacy in that embrace; we have now become survivors together.

I was asked a year ago what advice I had for keeping a marriage together under our kind of ongoing stress raising a child with complex medical needs (and a highly intelligent sibling who wants his share of our time and attention). I had none. All I could say was, “Our commitment and faith hold us together. We don’t take our vows lightly.”

There have been plenty of times the stress has been overwhelming and walking away has sounded appealing. Relationships flourish in calm, connected seasons. They are far harder to sustain in seasons of prolonged struggle. Each time I feel the stress taking over and the temptation set in, I take a long view on what the impact of that decision would potentially be. I picture our fractured family; the impact on our boys; being a single parent. That’s not a path I want.

Three years on since our second son Cayden was born, I see my husband doing a wonderful job with our boys. We have more moments of laughter. We are dedicated together to finding ways to navigate the stress and provide more fun times together as a family.

We have become survivors. Together.

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.

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.