Category: Covid

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.

Hummingbird? Or eagle?

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

Recently I read a Rhema Word for Today article about the differences between a hummingbird and an eagle. While utterly beautiful, hummingbirds expend a breathtaking amount of energy as they go about their day. Their little wings can beat upwards from 10-15 times per second all the way up to 80.

On the flip side, eagles use the wind and air currents that are already established to soar. Their energy expenditure is far less.

Play this scenario out over a lifetime, and their life expectancies are staggeringly different. Hummingbirds can expect to live for around five years, whereas eagles can live up to seventy.

There’s a message in there for some of us.

Are there ways to spend less energy and enjoy a longer life (hopefully one that is also more fruitful) where we are not figuratively beating the air for no good reason and just draining through our internal resources?

This has got me thinking. I had a 48 hour window recently child free. My oldest son enjoyed time with relatives, while my younger son was looked after by medical professionals at respite.

That break was a life saver. It gave me the chance to check in with my body and realise how high my anxiety levels had become on a daily level. I’ve realised what I was told by those in either the medical arena or the natural homeopathic area was true – I had truly become “stuck” in the fight or flight mode.

From the moment I wake up, the headaches begin. My heart starts to race. I think through all that I need to achieve that day. Those are the expected moments.

Then every day I must prepare for the dramas and the unexpected moments – the bowl I forgot to move in time that got smashed, the sudden vomit, the moments he stopped breathing, the short notice surgeries, the critical phone calls that seem to come all the time – leaving me on tenterhooks at every moment for what big episode is about to happen. The confiscated bouncy ball that is discovered and mouthed and nearly becomes a choke. The constipation that becomes faecal impaction and my son is screaming in utter agony as I try my best to perform a manual evacuation at home with no training. The moments where while I’m doing that and trying to relieve one end, he is vomiting out the other end and risking aspiration unless I rapidly get him turned into the recovery position. Sorry if that’s too much TMI… Living in a medical world doesn’t leave much room for flowery pleasantries or disguising some of the more baser realities of life.

I’ve realised that all this constant stress for three years plus has created neural pathways that are hard to undo.

So, I’m checking in with myself more. I am used to not getting time to eat or shower. I am used to overriding my body’s need for food and sleep, because there are too many jobs to do and emails to respond to regarding Cayden in the evenings. Evenings are also the time now where my husband and I try to spend focused time with our older son playing a board game or whatever else of his choosing.

But I don’t want to become a long term hummingbird that seems to defy the concept of rest. I can’t change the currents of my life. But I want to learn how to ride those currents and roll with the unexpected moments, without causing heart palpitations and irreversible stress damage.

I recently heard the phrase, “If you don’t make time for your wellness, you will have to make time for your illness.”

I’ll be blunt. I have no time or energy to manage more illness, especially in myself. I have realised I *must* do all that I can to protect my health as much as I am practically able.

I am still the mother of a son with complex medical challenges. I still have extremely little time to myself. But I am prioritizing getting a shower each day, AND breakfast, even if that means leaving my children unattended for a few minutes with TV while I do so.

In the past that concept was too hazardous for me to cope with. But now, I am having to trust that for my own wellbeing, my children are old enough to have me shower without a life threatening emergency happening. (I will note a lot of the hazardous rooms in our house have locks and baby gates, like bathrooms, where Cayden liked to try climbing in head first into the toilet). Making our home safe has always been a priority so if my back is turned for an instant, I do not pay too high a price for that moment.

During the day, as I watch my two boys play happily, I’m reminding myself to breathe. (Yes, I even forgot that life-preserving skill). Sometimes it takes thought. I realise I’m holding my breath. Then I look around and remind myself that I am safe and so are my boys. I tell myself inwardly that we are safe, and we are okay. When I realise my shoulders are tight with bound up stress – which is almost constant – I pause and consciously relax all the muscles that I can. It’s like trying to learn stress management skills while stuck in a tornado.

I am having to retrain my brain that we are okay. We have experienced Covid. We are okay. We have experienced heart surgery with Cayden, brain damage, and numerous other daily and medical challenges. Very little ever goes to plan.

But we are okay.

*Exhale*

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

These moments are gold. Getting a day off, thanks to respite taking Cayden again (first time since he caught covid from their facility) and my sister going all out and taking Luke for us too! Earlier this week I was so strung out and still recovering from covid I wondered how I could last another day. But my 4am-I-can’t-sleep moments gave me fresh new ideas for how to help Cayden learn to eat… Watch this space.

Thankfully yesterday we have now hired some home help and Leon and I got a date night!!! I pampered myself with my first ever facial and first time in more than a decade getting my nails done!

A chance to exhale… Recalibrate… So deeply needed and so incredibly wonderful.

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?

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.

A Day to Forget

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

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.”

by Karen Loo, posted in Complex medical needs, Covid, Downs Syndrome, Faith

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.

The Vaccine War

by Karen Loo, posted in Complex medical needs, Covid, Vaccine

I haven’t wanted to weigh in on this national debate, because frankly I don’t have the energy for all the opposing views. I now feel compelled to share from the perspective of a family with an immune compromised child.

In an ideal world, we would have years to determine a vaccine was 100% fail proof (a standard which doesn’t actually exist). I was hesitant to get the vaccine. I didn’t feel it had been around “long enough”.

Unfortunately however, the virus has proven more adaptable than we as humans are. It has not allowed us the luxury of time to sit back and watch as the global death toll rises. This virus has infiltrated our societies and our homes. It has put us into instant lockdowns, as initially that was our only armour available to fight it. There was a race to develop a vaccine, and everyone held their breath to see if that light at the end of the tunnel was truly achievable.

Then, remarkably, we got there. Vaccines became available. And suddenly, like all contrary elements of human nature – people don’t want them. The freedom of choice now offered means many would rather take their chances with Covid.

I would wait hours in a queue if it meant I could vaccinate my young children. I would pay money I am lucky enough to have for the privilege to access the vaccine. I feel for our under-privileged global neighbours, who do not have such ready access to vaccines and are watching family members die in droves for lack of oxygen (think India). How elitist must we seem? To have access to a (free!) vaccine we willingly forgo – and preach to others to do likewise?

If you have never sat at the hospital bedside of a loved one on oxygen needing help to breathe, the threat of Covid may not feel very real. I can assure you it is a heart-breaking, heart-rending situation we have experienced multiple times – long before Covid existed – and would give anything to avoid.

Personally we have been in a form of medical lockdown for almost 2 years out of concern for our youngest son. He has fought through heart surgery, brain damage and multiple hospital presentations. 100 nights in hospital could have stemmed from something as simple as a cold, or the latest dreaded RSV virus. I got vaccinated early from Covid, despite my own hesitations, to protect HIM. (I will note that no, I have not since become the Tin Man with lots of metal clinging to my body. Shame really. I could have walked into a Level 2 jewellery store and made a fortune. Just kidding).

But I cannot protect him from hundreds of thousands of people who choose not to get vaccinated against Covid. Delta especially is insidious and will find its way throughout our society without herd immunity. I kept our son out of daycare, I stayed away from our closest friends, I rarely even let him visit outdoor playgrounds, libraries or the supermarket out of concern he would catch a virus that would send us to hospital again. That was long before Covid arrived. Covid is known to be a serious virus even if you are healthy. If, like my son, you have compromised immunity or pre-existing co-morbidities, you are reliant on the choices of others to help protect your life from a virus that would have serious (and hopefully not fatal) consequences. My son is a fighter. But there is only so much I can do.

By all means make your own (informed) choice when it comes to choosing whether to be vaccinated. But know that your choice – limits ours.

Cayden on oxygen during one of his many hospital admissions in his first year.