Terror at the park

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

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

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

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.

A Day to Forget

Today has been one of those super crap I-never-want-to-think-about-it-again days. The kind where you mentally flick through how many chocolates, DVDs, warm baths, books – or any combination of the above (or let’s face it – just one of ANY of those would be magic right now!) – it would take to make up for the crap-ness.

It started yesterday. It was our first day out of isolation for Cayden and I from covid. I got a last minute call from the hospital to ask if we could take a cancelled auditory appointment today. Foolishly and under pressure, I agreed. Never mind the fact we were only 24 hours out of a week’s worth of a virus that has forced the world to its knees.

Needless to say, I was exhausted. Before the appointment even arrived I wonder if I was up to more than just manning the children from the couch while they watched TV.

Over dinner last night as I fed Cayden his puree, my husband innocently asked me a question. I paused briefly to rub the exhaustion from my eyes. Cayden saw the opportunity and with a quick flick of his foot saw the entire bowl of puree cascade to the floor and smash. I knelt amongst the puddle of puree as I contemplated yet another lengthy clean up – I had cleaned up the very same section of floor just hours prior from vomit – against the odds of long covid when you don’t get enough rest. What can you do?

I cleaned this latest disaster up and pushed my body to prepare all the items I would need for the morning’s new appointment.

I arrived early. It should have been a good start. In line with turning a new mental leaf, I saw a toy area in the hospital waiting room and actually considered it. After checking with the receptionist about their sanitization policies, I allowed Cayden the greatest (and rarest) gift of all; freedom.

It took him five minutes to exhaust the delights of the toy area. He moved on to swiftly removing his shoes and socks and throwing them on the waiting room floor. Next, he found the stickers. The permanent kind attached periodically to all the seats to enforce Covid distancing between those waiting. Alas, the adhesive was no match for Cayden’s prying fingers. I started chasing my barefoot son around, trying to tell him no, while he gleefully kept peeling them off and I tried to frantically keep replacing them – or better yet, madly dash to the next one he had his eye on first before he could get to it. As the curious eyes of other parents started to track our movements, I made sure to hang my head to avoid eye contact as I sprang around after him.

Time for distraction! I grabbed his bottle and plonked him on my lap for a drink.

Alas, but no. He hustled the bottle and took off to the coffee table he had just been climbing and adeptly started pouring his milk all over it. I edged past another mother with her two sons as I hurried to find a box of tissues to clean up the new mess.

Finally, we were called in. My relief was palpable.

Momentarily.

Imagine my small child strapped to his stroller as they tried to administer various tests. He was determined to squeeze and wriggle and frustrate their processes.

For once, I was too exhausted to care about their struggles. I flopped on the floor and watched them do their job.

He was allowed a ten minute reprieve in the middle, at which point he started peeling papers off their walls, finding their cords and cables and running up and down their corridors with glee. I saw one office worker look up with surprise as my small charge appeared down her end of the private hallways. I heaved him back to my hip apologetically and strode back from where we came.

“Sorry,” I muttered. “It’s really hard to tell him no and have him understand since he had his brain damage. He’s also so excited to be out, he’s been home in isolation for so long…”

My words trailed off meaninglessly.

Back in the appointment and Cayden made quick work of his shoes. Again. One sturdy missile flew it’s way to my head before I registered to duck. It smacked my head before falling to the floor, looking like an innocent shoe and not at all like a dangerous projectile in the hands of my child. I winced in pain. The technicians were concerned and offered me ice. I waved them away. “He does this all the time at home. I get hit in the head every day from him throwing stuff,” I grimaced as I realised how bad that sounded on a parenting level. How do you explain the propensity of downs syndrome children and throwing things?

Eventually the appointment concluded. A quick nappy change was anything but. He wrangled the stroller to be by the bathroom taps, nearly tipping the stroller over in the process (with him in it), and then twitched his fingers around the rubbish bin lid repeatedly, preparing to deep dive into it with his arm. My squeals of frustration fell on deaf ears.

Finally, the bank of elevators. A waiting couple and I each tried to catch the same one. As I checked with the couple if this was going up or down (down was my destination and I was sure the arrow said down but yet it appeared to be going up) I heard a strange alarm sound. I carried on trying to figure out which way we were headed (it shouldn’t have been as hard as it was) when one of the couple politely pointed out to me that my son had his finger on the emergency alarm of the elevator.

He was ringing it.

That was the sound I was hearing.

“Oh!” I cried out. “I just took my eyes off you for a SECOND!”

They exited at their upwards floor then kindly pointed me back the way I had just travelled – down.

In a flurry of craziness we finally got to the carpark. As I prepared to plop him in his car seat, I realised somehow the carseat had become unsecured. Crap. Even beaming lights on my cell phone could not help me figure out where the piece of metal was I was meant to clip it to.

His brother’s car seat opposite it was!

Mission over, I finally got to the front seat where I unapologetically tore into the day-old remains of a donut from yesterday. I had thought as I packed last night I might just need the sugar hit today. True enough.

As I chewed (or inhaled) the partial donut I realised I could not take Cayden straight home where Luke was still isolating with Covid. His behaviour had shown me one thing clearly.

Cayden needed more outings.

I would try the local hardware store. I banged my head on a carpark sign in the mobility bay as I wrestled the stroller out of my boot ready to take him in.

Seriously?! This was starting to feel like a cosmic joke. I rubbed the sore spot on my head. Again.

I eyed the other two children with their grandmother in the indoor playground. The winter weather left me few options. The sound of their coughs carried over to me.

I took a deep breath. And let Cayden inside.

“Oh, look after the little baby!” the grandmother exclaimed to her two as Cayden took off to the slide. I didn’t have the energy to correct her and say he was actually a preschooler.

By the time I got home I was ready for bed. My husband kindly took the kids while I grabbed an hour of rest. I woke up still shattered. Ready to head back to my newly-favoured spot on the couch with a book while the kids watched tv for as many minutes as I could possibly eke out, I arrived downstairs to find… a mess.

Kinetic sand had been ground into the mat, the floor, my soft pink cushions and the whole lounge was in messy disarray. Furniture was moved, toys were everywhere and my sanity had long since fled.

I quietly asked my older son to clean up all the kinetic sand. He made a meagre effort. I asked again. Little happened. I asked a third time.

Then I snapped.

“JUST CLEAN UP THIS SAND!” I yelled as my fists pounded my thighs, not once, not twice, but five times.

His eyes widened in shock. I tore the bag off him as I started piling the sand off the floor back into the bag myself.

Soon he trundled off to play and I was left to get the wet wipes, the vacuum, and the dustpan. (I gave him a lengthy apology later). More than an hour passed.

I was still cleaning up the sand. My throat was sore and my chest was aching painfully from Covid. I knew I was overdoing it. The end seemed nowhere in sight.

I started to sob. Big, noisy sobs as I sat on my haunches and wiped and cleaned. The vaccuum had already run out of battery power; now it was elbow grease. If I was living in a movie, this would have been my breaking point. I would have screamed at the sky, “I GIVE IN! WHAT MORE DO YOU WANT FROM ME?!”

But my life isn’t a movie.

So instead, I stood to take another load of kinetic sand particles to the rubbish while armed simultaneously with one of Luke’s shoes to put away. A moment of tired clumsiness and before I knew it, the dustban had swiped a glass jar of medicine from the countertop and sent it spiraling to the tiles below… ready to smash into thousands of glassy smithereens.

As I watched the black syrup explode out and congeal on the tiles I could have cried.

Except – I already was.

I could have screamed and sworn at the top of my lungs.

I would have really liked to.

Instead, I sobbed harder, grabbed more wet wipes and started to clean up the tiny glass shards.

Two hours passed and I had finished cleaning. My favoured spot on the couch – the one where you can’t see the tv so the kids don’t climb all over me as much – had become the kids new play area. Luke proceeded to upend two boxes of tidied up toys all over that precious, clean spot.

But that wasn’t enough.

He then grabbed Cayden’s trike and proceeded to do noisy wheelies all over the lounge floor. The bean bags made a great landing destination for improvised trike crashes. This is the son with Covid who only tested a strong positive two days ago. As the noise mounted and I winced at what his driving could be like a decade from now, I resigned myself and gave in.

I pulled the earmuffs off their hook in the pantry and stuck them over my ears.

Some days I never want to repeat.

Ever.

“Stop Protecting Cayden.”

It’s been two years of extreme vigilance to avoid Cayden (or us) catching Covid.

Two years of barely seeing anyone. Two years of hospital appointments, risk assessments, health checks. There’s been GA’s and surgery.

With Cayden’s level of daily needs and our stress levels we recently qualified for high level medical respite, where Cayden was looked after by trained nurses. He wasn’t allowed to go if he had even a runny nose. As a result, I kept him home even more and was even more cautious around where I took him. Getting a break was so critical I thought it worth any residual cost.

Which was great, until…

Cayden caught covid. From them.

The irony couldn’t have hit home more. One of the few times I gave my son into someone else’s care so I could get a break, instead morphed into a household of sick people, myself included. I spent two years of making sure Covid didn’t breach my door, and yet respite let it in.

Mere days before this happened, I was home and revelling in the fact that my household were well for once. I appreciated being tucked up for winter, aware that while Covid, flu and RSV raged outside, it hadn’t penetrated my cosy haven.

Oh, the irony.

That doesn’t go to say that my mental health was in a good position. On the contrary, the years of hypervigilance, risk assessment, isolation and protection had taken a toll of its own. I had finally given in and gone to a doctor who said I was about to break from all of the stress load on me. Other doctors had already told me that my daily load in working with all of Cayden’s areas of needs had me doing the equivalent of three nurses full time jobs.

Around that time, God whispered to me in amongst my daily busyness, “Stop protecting Cayden”.

Intoxicating words. Frustrating words. Confusing words.

“Stop protecting Cayden.” Those three words were so simple, and they seemed to promise a life different from the one I lived. A life where I didn’t constantly sacrifice my own needs or the needs of the rest of my family in the name of protecting Cayden’s health. Fear jostled for its own voice though, reminding me the whole *reason* we protected Cayden was so that he didn’t get sick and send us back to hospital. By not protecting him, would we just arrive at the same undesired outcome?

Changing my decisions daily according to the risk of exposure to Covid or other bugs had become so embedded internally I found it almost impossible to put those words into practice. If I chose to take Cayden to an outdoor playground and I saw one other child there with a cough who came close, we were out of there. If I tested the waters of a mainly music group and I heard a sniffle or a cough, I spun on my heels and packed us both back up to the car before we’d barely even passed the doorway. Risking an outing to an indoor swimming pool for the first time in two years meant packing bags the night before, rolling out of bed early in the morning and piling straight into the car while my husband fed Cayden a bottle of meal replacement pediasure as I hit the motorway and Luke snacked on his breakfast in his carseat. All so that we could arrive at our destination soon after opening, on a public holiday when it was one of the quietest days of the year. Trust me, I had rung ahead and asked. I knew when the risk was lowest.

The joy and delight on my children’s faces as they played and splashed almost outweighed my desire to keep my black face mask on emblazoned “heart kids” – a big, black warning sign for nobody else to come close. I had a *fragile medical child* with me! As soon as the pools got busier and I could not socially distance as easily, I apologised to my children and bundled them up in towels out of the water.

I hoped all of these carefully laid safety nets may just get us through another winter covid free.

That is, until Covid jumped over every hurdle and curled around every corner until it found my one spot of weakness. Respite.

It’s hard to say how I felt when I was notified of a positive case at the same time Cayden was present at respite. Let’s just say my feelings would not equate to “polite language”. I was incredibly frustrated. I hoped we may yet dodge the bullet, but that was not to be. Days later, Cayden became symptomatic and tested positive.

Quantifying stress levels at times is challenging. Should I say mine were stratospheric?

My cousin put it beautifully. “You are facing what you have most feared in two years, Karen.”

Hmm. Yes, that about covered it.

And suddenly, the world looked different. Instead of battening down the hatches of our home to keep Covid OUT, we were now battening down the hatches and isolating at home to keep Covid IN!

I said to my husband, “Why choose not to go somewhere in future because we might catch covid – WHEN WE’VE ALREADY GOT IT?”

Surely it was time to change our approach. A wise friend pointed out to me, “Karen if you keep Cayden home any longer, you will disable him.”

Cayden’s neurologist put it this way – “Neurological impairment with social skills and language development. However extremely good in his gross motor and fine motor skills.”

I think God knew that I was not going to change my ways. I couldn’t stop innately protecting Cayden because it was all I had known since shortly after his conception.

I’m grateful Cayden didn’t catch Covid on my watch. In a weird way I’m glad he caught it from a medical facility and not because of a choice I made to take him somewhere. But I can no longer justify the decision to keep him home to protect his health, if it is contributing to neurological impairment in other areas of his life and wellbeing.

One thing I am sure of; God is wanting to use this situation to open up our eyes and to start living our purpose again. At this point in time, I have no idea (whatsoever) what that looks like. But limiting Cayden’s exposure and outings to protect him I think must become a thing of the past.

Now, as soon as we come out of our isolation period (and get well) I can start to work out what that looks like…

Here’s to a different future. Fingers crossed.

If You Follow

“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.”

Spitting into the Wind

All mothers are heroes. Single mothers are their own breed of “incredible”.

Special needs Mum’s take it to a whole new level again.

I find as time goes on, it gets both easier (in some ways) and tougher in others to raise a child with disabilities. Yes, we have had fewer hospital admissions in the last year. (Hooray!!!) What gets harder is the reactions from others when you have the rare opportunity to unburden your heart about your day to day struggles. When you try to tell people about the accumulation of stress, trauma and exhaustion all piled on top of each other – you are met with confusion and misguided positivity. “But – your son is doing so much better now! Look at everything he’s achieved!”

They’re not wrong. The difficulty is, they’re not looking below the surface. Yes, your child may be excelling. But how did he get there? Who’s effort was the constant wind behind their back pushing them to achieve normal but – in their case- challenging milestones?

Every special needs parent (or complex medical needs parent, in my case – there is a very strong distinction I find now) knows the eye watering challenges, sacrifices, loss of their own identity and incessant pouring of their own energy into the ones they love. They will be familiar with the concept of having nothing left to give but the medical appointments don’t stop. Their child’s medical emergency won’t wait. They will know what it’s like to be in pain within their own body but to not even care about that. Their child’s needs are far more pressing.

In a world where it is sometimes hard to laugh, there is one failsafe to inciting hysterical mirth. Anyone that says to you unknowingly, “What do you do to relax or look after yourself?” almost deserves the bark of laughter that escapes. Don’t get me wrong, it’s a very caring question, said from a heart of concern.

But it exposes something uncomfortable to me starkly. The person asking does not live in my world. They do not live in a world of complex medical needs, where any mother gets piled with task list after task list from each of the many medical professionals involved in her child’s care.

That is why I call special needs Mum’s super heroes. They have to keep their household (and any other children) functioning, they have to front up to endless medical appointments, they need to cook dinner and do all those “usual” Mum tasks, while being a full time caregiver of a child who should have long ago left babyhood behind. For many of these Mum’s, it is a lifetime commitment of an adult-child who still has toddler or infant capabilities.

I had to reassure Cayden’s new Education Support Worker (ESW) this week. When his Advisor of Deaf Children specialist came into his daycare and started giving all her suggestions, it started to raise questions for the ESW. (Who is also the daycare manager, and is studying to become a skilled Early Intervention Teacher herself). “Do we really have to do all this, Karen? Is it necessary?” she asked me.

I smiled at her with pity. “What you’ll learn is that every specialist has tunnel vision. They are all only interested in their one area of medical expertise they hold. Very, very few will ever look at the broader picture and what is involved for the family as a whole, bigger unit. We try to do everything each one suggests, but at the same time, you can only do what you can do.” It was an affirming feeling, to have someone else join my world and balk at one of the first appointments they were involved in and the attached “developmental task lists”. I didn’t bother saying I couldn’t count how many hundreds of these such things I had encountered.

What people living in a “normal” universe often don’t understand is the level of pressure on special needs Mum’s. Every mother wants the best for her child. Every mother is driven for the best outcomes for her child.

But not every mother is still trying to teach her child basic survival skills years on – how to eat or consume any food themselves, how to safely drink anything for themselves, how to dress themselves, or how to toilet them. Each of these skills can take hundreds of hours to teach for a child with disabilities. There is an inherent sense of pressure for a special needs Mum. “If only I could do that *one task* more, my child might have a better outcome. Maybe the gap between them and their peers wouldn’t be so large.”

It becomes an unending, driving force.

Now think about if there are numerous *one more task* scenarios for numerous critical outcomes. How would you choose which to prioritize?

Can you choose? Or do you, like me, try to do all of them simultaneously – but at least weight them in order of importance?

It drives special needs mothers right into heightened states of anxiety, burn out and levels of exhaustion that is hard to imagine. I could go into the weeks, months or years some mothers endure of hospital stays with disrupted sleeps, traumatic medical procedures, widening levels of expectations and tasks – but the reality is simple.

It is a life long task, and it is not easy.

Anyone that looks at you and thinks that because your child has made progress in whatever areas and therefore you should be suddenly “okay” has not truly visited your world.

The stress is cumulative. The trauma is cumulative. There is almost never time to cry. There is almost never time to grieve the life you thought you would have. You live in this world – you don’t get to leave it and reassure yourself the other world of “normality” still exists.

Then there is mother guilt. If you acknowledge your grief and sadness over this new, special needs life, are you disloyal to your child? Would some people think you didn’t love your child? Heck no. We all love our children fiercely. We champion them fiercely.

But who champions us?

Those are the moments where I feel like I am spitting into the wind. I am crying out for people to hear the difficulties and just let me have a listening ear and a warm hug to cry within. I often say dryly the only people I get to talk to are those paid to be in our world medically. Trouble is, those people don’t give you hugs. They are also slaves to the clock.

Most people I encounter outside of our medical world want to minimize our struggles and brush it away. I’m sure it’s not intentional. They don’t live in this complex medical needs world. And I know that’s true, because I didn’t use to live here, either, and I intimately know the difference between the two.

Next time you see a super-hero special needs Mum, give her a hug. Even if she looks “okay” on the outside. There is probably a wealth of struggles, fears and worries underneath the surface that she is too out of touch with for her to be even aware of.

For others of us, who find ourselves on the brink of coping under the weight of medical “task lists” sometimes – that hug and brief moment of normal, standard, and so very rare social connection – can be a lifeline.

A Fresh New Tomorrow

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.

‘They almost broke me’: Parents fighting to give birth to children with Down syndrome

Jehan Casinader, like myself, was recently reading about countries such as Iceland having almost “eradicated” Downs Syndrome. Thanks to pre-natal testing, the birth rate of children with Downs Syndrome has plummeted globally.

Jehan sought to find out if New Zealanders too were feeling the pressure to abort. I was one of twelve families he spoke to and sadly, I could confirm the pressure does exist. Please read the article or watch the video if you are interested in learning more about these issues and the pressures experienced by those with special needs.

https://www.stuff.co.nz/national/health/125739984/they-almost-broke-me-parents-fighting-to-give-birth-to-children-with-down-syndrome