Category: Downs Syndrome

“I survived.”

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

I had lofty dreams when I was younger. I wanted God to use me; to be an example to others and to show what God could do through your life when you leapt off the boundaries of your own limitations and ideas and followed him instead.

I had a lot to learn.

These days I observe friends who lament their lack of community. Their desire to join Bible studies. Those around me who demonstrate a strong faith.

I find myself wondering. “How deeply have you been tested?”

Friendship, social connection, loving others, sharing my faith; these were all important values to me.

Until life as I knew it – and expected it – exploded in my face and I felt like I found myself in a battle for life or death.

My war wasn’t on the fields of a battleground. It was inside my own heart and confined to the sterile walls of a hospital and our own home.

When you face one of your own personal nightmares – a pregnancy carrying a child you’re warned may not live, has multiple confirmed disabilities and health issues (and other possible additional ones) and the pressure to end that child’s life, you’re in a fight.

You’re in a fight for what you believe. What value you place on the life inside you, and the deep dreams and desires you had for your own life that are now forced to change? Will you stand firm with your values, or will you fold in the face of a battle and pressure too great to withstand?

Those internal battles stay with me still. We made our choice and I believe it was the right one. We have paid a high price for our choice.

We have also been blessed by our choice.

As time goes on, more layers are added to our life and we finally start to get some medical breakthroughs. Having a stomach tube now to feed our son all liquids absolutely saves us. It lifts the daily pressure around drinking and sickness enormously. (Children with disabilities who get a common cold can find tasks like drinking really challenging – they can’t coordinate their suck and swallow reflex when they are very snotty and clogged up. Drinking becomes hazardous as they try not to choke so they avoid it, leading to disastrous outcomes. Put that in the context of a global pandemic and you have a situation of epic internal dilemnas.)

Medication to help calm our son’s behaviour makes life more liveable and eases the strain in our day to day living.

Suddenly his giggles and snuggles become more apparent. His brain development starts to skyrocket in ways we had hoped for but hadn’t really seen until now. Our spirits and our hopes start to rise again. We have hope again.

We still live in a world of what I see as immense disability. We still juggle our son’s lack of hearing or ability to speak; his developmental delays; his regular nappy changes and spoon feeding him purée still for his meals. The list continues.

But I am so grateful life is easing.

I am not the bold, strong Christian I always envisioned and wanted to be. So many times on this battlefield for survival – the bleeding in pregnancy, the premature birth, the heart surgery, the apnoeas, the risk of aspiration from so many vomiting episodes, the brain damage – I have wanted to raise a white flag of surrender. I have cried out for relief and begged for change and found none. I have put one foot in front of the other in constant anguish and struggles of heart as I have sought – and fought – to keep our family together and tried to balance everyone’s needs on so many days when even a common shower was out of my reach.

It has been an uphill battle, the likes of which I can’t begin to describe.

Now as time goes on, I have a chance to reflect. I am not standing on roof tops proclaiming the joys of my faith.

I am instead possibly emerging from the trenches, dirt smeared and eyes ringed with exhaustion, proclaiming;

“I survived.”

I can only speak for myself, but I guess sometimes, for some of us, faith is not a cute exterior that looks beautiful and appealing.

Sometimes faith is a raw, nitty gritty truth that you wrestle with in those times of darkness and very limited hope. When death seems too close and you don’t know if you will be given the choice of keeping your son, or if life and medical issues will steal his life from you prematurely. You are forced to adapt and live within the shadow of that understanding.

When statements come at you from all corners like, “He might not live.” “If there’s lots of handicaps you would be better to terminate.” “If there’s brain damage you would be better to let him die.” “If you do not medicate, he will die a slow and painful death. But if you medicate, we can’t tell you what his outcomes will be.” “Have you considered a ‘do not resuscitate?’”

It alters you. It marks you. Ultimately, it changes you.

I read in Psalm 71:20-21 this morning:

“Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up. You will increase my honour and comfort me once more.”

I don’t hold myself to the same pedestal of “being an amazing, praise filled Christian” I used to. (I’ll point out my dreams and desires and understanding could have been wrong in the first place). I don’t know if I’ll ever be someone speaking to large groups of people about God and his journey with us.

Now, all I can say as we head into yet another surgery this week, is it feels like the level of the daily struggle is easing. I can start to walk out of the depths, holding my flag, and proclaiming;

“I survived. My family – survived.”

Survival has become the biggest and deepest statement of faith I can make.

For us, that’s a big deal. It’s not something I take lightly.

Wrestling with Hope

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

*Wrestling with hope*

I’m currently barricaded behind baby gates in the kitchen sitting on the floor with my laptop. I don’t know how long I have until Cayden starts his assault to reach me…

Cayden is sick. Again. Bacterial conjunctivitis. I have cleaned up his vomit twice in the last approx twelve hours. Sigh.

In a big milestone, Cayden turned four years old three days ago. Our celebrations were nondescript. We invited family. He doesn’t have friends his age to invite. Party food means nothing to him. Candles on a cake that he won’t eat just provides a fire hazard. More toys for him to fire over the upstairs banister to whatever unsuspecting head may be below could be humorous, but more likely just dangerous. (I’m laughing with vague hysteria as I write this).

Instead, we went for a bike ride. Our glorious fallback. It was wonderful. We tried somewhere new with sparkling water and nature surrounding us. There was a fallen tree and a slip blocking the narrow pathway. No matter. We navigate far worse things than that. (Incidentally Cayden has just moved furniture to breach the kitchen bench and is now firing empty containers, pens, toys and duplo projectiles from his vantage point at me). We pulled together as our family team of four and we got up and over the slip safely with no damage other than a bit of extra mud on our shoes. (I almost giggled when a lone rider with no little tag-along warned us later about it as she’d turned back). On our return trip we spotted a family with two young kids in a pouch on either side of the mother’s bike approaching the slip. I called out, “With some determination and teamwork you can get over it, but it’s not easy!”

We changed medical practices last week. Our new GP said we “were under way more pressure than any other family they serve in the practice. Remember with Cayden Jesus says what you do for the least of these, you do for Me. For you guys, surviving IS thriving! But there’s hope. Things will get better.”

I SOOO appreciated my husband in that moment. Without even a flicker, he lobbied back about her last comment, “We’ve heard that before!” We have. A few times in fact. Generally right before we get another massive medical setback.

There’s no sugar coating it. Things are NOT easy.  

A new non-Christian marriage counsellor we visited for the first time (at a cost of work hours and sleep etc) stated matter of factly, “your marriage can’t survive this kind of pressure.” I’ve gotta say, that’s a pretty brutal assessment for a first meeting.

Recently Leon and I attended pieces of a weekend marriage seminar. I am searching everywhere I can to find advice and strategies to help couples in situations like ours. Practical and applicable advice is VERY hard to find, if not impossible. One of the questions there was identifying your family motto. Our unintended life philosophy is “We get things done”. After some thought, I came up with “Life is tough; but we’re tougher.”

I started searching for others who might understand. Books of people with extreme parenting journeys. I found Kate Swenson’s book “Forever Boy” on her severely autistic son. I didn’t expect every single page to resonate in more ways than I anticipated. The behaviour of her autistic son mirrored Cayden’s so closely.

But one analogy she used connected deeply with my heart. She compared their journey to like being in a burning building. Everything was burning around her (in her analogy) and she was plastering a smile on her face and reassuring everyone, “EVERYTHING IS FINE!”

Confessions. That isn’t my approach. I too, relate to her analogy. Except my response is, “I’M IN A BURNING BUILDING – AND I CAN’T GET OUT!!!”

A friend sent me a prophetic email recently with a similar analogy. It spoke of Christians feeling like they have been in a hot furnace, reminiscent of Shadrach, Meshach and Abednego in Daniel 3 in the Bible. It said that those who had submitted to the process were about to be come out of that season of heat and pressure and they would carry the glory and grace of God wherever they went in magnificent ways.

As I read that, my heart fell. I have not submitted to this process of refining. In any way. Like Job, I have railed against our situation. I have judged the medical struggles Cayden has been given to be unfair, harsh and frankly – just plain unnecessary. I have demanded answers from God. I have asked how ANY of this could be for our good when all it has done has pulled out the ugly parts of me and put me in the deepest space of questioning God that I have ever had? I keep arguing with Him that I would have been a FAR better Christian (think lollipops and daisies) if I stayed in a world of glorious ease where I had energy to minister to others and prayers got answered and life was a journey I walked closely with God.

Nothing prepared me for this. I wonder sometimes. Do we understand the God of the Bible? The God that allows fire in our lives to burn away the impurities? Job declared “When you have tested and tried me, I will come forth as gold.” (Job 23:10)

I won’t make that same claim because frankly I think I’ll have to settle for something far less. I think in my case our situation has multiplied, rather than removed, the impurities!!!

I really struggle when people try to reassure us that there is hope. It sort of feels like someone throwing a life preserver a few metres away from you in a churning sea. It might be helpful, if only you could reach it.

If I had a choice, I would far rather pray instead for just the strength to stand – to allow the struggles to flow over and around us without consuming us. I would pray for courage; to be able to look at the future without wilting. I would pray for friends; those who would put their hands on our shoulders and let us take off our cloak of armour and strength for just a moment and lean on the strength of others. I would beg for peace; to allow our bodies a break from the constant fight / flight adrenaline hits that a life of hypervigilance around Cayden entails. I would pray for joy; the ability to find something to sing or smile about, even as you’re on hands and knees cleaning up vomit. Finally, I would pray for perspective; the ability to lift our gaze and see beyond our own horizon.

I honestly don’t know that I would pray for hope.

The Moment

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

It was a moment I’d often heard about. Now it hit me unexpectedly.

“Mum, why is Cayden’s brain different?”

The voice belonged to my curious six year old son.

I was driving. I was exhausted after weeks and nights of sick children. I wasn’t prepared. But the moment was here; the moment where I needed to come up with an age-appropriate explanation for why Cayden had so many challenges.

“Well Luke, I guess when Cayden’s body was being formed, some of the parts of his DNA didn’t quite form right. It created something in his body we call Down Syndrome. His brain absorbs things a little differently and it means it takes him a lot longer to learn things. Some kids with Down Syndrome only learn to walk at Cayden’s age now, or even later. Then on top of that, Cayden’s brain formed with something else, called autism. You know how Cayden doesn’t really talk? Some children with autism never learn to speak. Cayden doesn’t know about how to use toilets, does he? Some children with autism don’t learn that either, or how to ride a bike, ever. Cayden’s life will look very, very different to your life or my life. Things take longer for him to learn and his journey is going to be very different to ours.”

At that statement I choked up. I started to cry as I navigated driving the streets.

Luke absorbed my words quietly. “Thanks for the Lego Mum.”

“I love you Luke. I hope you’ll have a lot of fun with it.”

Right then it hit me afresh. The journey between two different parenting worlds that I have to bridge. One healthy, able son, enjoying the delights of the second hand Lego I had just picked up for him. The other – our second son, who can’t even get his hands on the choking hazard world of Lego that’s kept behind locked baby gates. One who chatters non stop from sun up to sun down (I’ll acknowledge he takes after his mother). The other, who lives in a world almost devoid of spoken words. One who loves to dive into food. The other who is still spoon feed puree as a preschooler. One who is fast and able and intelligent; one who is a kindy room two years below his age level because he is not safe with hazards like scissors and does not know how to communicate with children his own age.

The differences are large. And try as I might, I can not always bridge them.

I can love my sons with all that I have within me; but I can not change the dynamics of our life.

I have poured my entire life into learning techniques and designing new strategies to help Cayden learn the normal, everyday tasks most of us take for granted.

I have not succeeded in teaching him anywhere near as much as I had hoped. I thought for sure by now he would be drinking – anything – from a water bottle or cup for himself. I thought he might be chewing on baby rusks or crackers by now.

But no. That is not our journey. At least not yet.

I don’t know if Cayden will ever learn these things. I honestly don’t know. It’s hard to think about schooling in a year or so when I start to realise it really isn’t about learning to read or write anymore. It’s about “learning life skills”. Learning how to dress yourself; use a toilet; be independent.

School will be a different scope for us with our younger son.

I don’t have wise words to share. I don’t have advice. Life doesn’t always look like what we expected.

What do I hold on to? I don’t really know. Maybe it’s the moments – going out for a bike ride with Cayden on the back. Enjoying nature when I can in this way. Moments when I sit watching Cayden’s favourite nursery rhymes on tv with both of my kids and our home is calm. Dinner is cooking in the crockpot (chicken enchilada casserole on nacho chips). It might feel simple, but for me it’s not. 3 weeks of sick children, high fevers, numerous night wakes, medical appointments, exhaustion, keeping up with the housework – any calm moment I notice, and I appreciate.

I guess those are the moments you store up energy. Or rebuild the emptied reserves! You prepare yourself for the next step of the journey; the next bottle of milk I’m about to give Cayden now; the next question from my bright six year old; the next task in the world of special needs parenting.

I’ll enjoy the moments.

Time Warp

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

“He’s got a lot of disabilities, but he’s got the heart to try.”

I heard the simple explanation emerge from my mouth. We were at a new playground and Cayden was trying to scale a rock climbing wall to reach the ultimate reward – a huge slide. It was too advanced for him, but he was motivated to test his abilities nonetheless. I wanted to give him the freedom and encouragement to try.

The other mother watched his attempt. “How old is he?”

“Three and a half,” I said.

She took that in quietly. “Is he yours?”

“Yes.” I flashed a smile.

Internally, I paused. Is he mine? That’s the second time I’ve been asked at a playground if this little boy genetically belongs to me. It seems people often assume I must be a caregiver – someone hired to look after this little chap with clear disabilities.

I really didn’t know what to say, other than the obvious. Yes… he is mine.

Yes… this is my world.

Yes… I am doing sign language to my son.

Yes… he is different.

But he – and I – both long for him to fit in. For there to be a space for him in this world.

I was grateful for the parents who gave us space. Who gave my son the chance to try something beyond himself. Who waited patiently while their able-bodied children were anxious for their turn.

It’s such a strange set of emotions. As time goes on, I get used to it. Yet in some ways I don’t.

Two people have seen me in the past week and asked the same question. “When will he eat?”

It feels like a time warp. Time passes. People assume after a period away that Cayden will have grown and developed new skills. In some areas, he has. But often those skills are small and not blindingly obvious to casual observers.

At nearly four, he is still bottle-fed milk every three hours. No, he does not drink water. He has four spoken words. We still spoon feed puree only into his mouth.

The past few months have been a season of huge reflection for me. I think I have now come to terms with having a son with multiple disabilities. I have recognised he may never read or write. I wonder if he will ever speak a normal or complex sentence.

I have also come face to face with my own limitations. I have had to throw away all developmental goals (shh… don’t tell our multitude of specialists) for the simple goal of… living.

With additional hours at a special needs kindy, I have been able to move past just barely surviving each day. Now, I am at least living… some / most days. But there is no room for any extra. At the most basic level, I can get through the day. I can bottle feed my child, change his nappies, sign some words to him, take him to swimming lessons and horse riding for the disabled, spoon feed him and cook and puree food for him. I can read to my other child and do one on one time with him every evening playing board games to make up for the very unbalanced amount of attention his younger brother gets. I can cycle my older son to school, so we both get fresh air and exercise (not that he needs it though!), cook meals and manage the washing. I can wipe the innumerable number of spills and clean pencil marks off the floor and walls.

I can keep more than a hundred plants alive that provide us with limited fruits and vegetables. (I read research that gardening helps very stressed women. Let’s just say I took that to heart. I’ve created a “jungle” in our small yard as a result.)

Life moves on. Some of us don’t. The seasons change but it feels like our areas of struggle remain.

I am learning to accept the challenges of today. I am learning not to expect too much of tomorrow. I am learning that it is okay to pause for a few seconds; a few minutes; to let the explosion of greenery and flowers I’ve created around me soothe my soul.

I’m learning to just let each day be what it is. I feel guilty for not doing goals and teaching Cayden all these basic skills he must learn – but I recognize I simply don’t have the energy to work on any of those anymore this season. I have practiced his hearing aid twice this week, because an upcoming audiology appointment will demand it. I have also read communications from his neurologist, audiologist, ophthalmologist, early intervention teacher, education support worker and GP this week. (Feel free to ask me about the clinical mice trials looking into the GnrH hormone replacement therapy they are hoping will transfer over to humans and repair cognitive function in those with Downs Syndrome. Our neurologist wants me to keep up to date with the research. Just the normal light reading).

I don’t know if it’s okay to just enjoy the small things, like taking Cayden for a bike ride, to a playground and for a swim lesson today. It’s not fancy. None of those will make a huge difference to our lives long term.  

But in this season, it’s enough.  

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.

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.

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.

Teaching your child to engage with food

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

Oral aversion is a wily foe you never want to meet. The only way to vanquish it is through years of hard work to desensitize food, or surrender to it by employing serious stomach surgery for a mickey plug feeding tube.

I have wrestled with this foe for two years now. I have told medical professionals twice that I do not yet want to surrender to surgery. (If and when I do, it will be the end of the line for me. I won’t keep working on teaching Cayden to eat food).

It’s hard to imagine that oral aversion at its worst means children shriek and scream just being in the same room as food. That is the beginning of the spectrum of the term. There are approximately 30 steps to getting a child to engage with food, from being in the presence of food, to touching food with utensils, to picking food up with their fingers, to putting food in their mouth themselves – to finally, all of the mechanical steps of learning how to chew and swallow. For most children, they learn this over a six month period between 6 months to 1 year old. Our brains are programmed to move through these steps instinctively at this age.

For others, like my son, it can take years… if it ever happens.

I know wayyy more about this than I ever wished to. (And yet somehow, not enough).

Spending hours spoon feeding Cayden puree for years is not sustainable. I am throwing *everything I’ve got* at this issue now. (Medical specialists either hate me or love me – I come up with ideas they’ve never thought to suggest, but I also inherently put pressure on because I’m not willing to accept the status quo and I’m constantly trying to fix our situation. Desperation breeds solutions (at best), or ideas (at worst). When you’re the parent and this is your only hope – you’ll try whatever it takes.

Sleep and I parted ways unfortunately after Cayden was born. My mind now churns day and night for how to help Cayden and improve things.

My latest idea involves harnessing what Cayden loves (containers, opening and shutting doors) to create a kitchen kitset full of real food in clip-shut containers hidden behind cupboards. I’m buying sensory board books all about food and sticker decals of playful fruit and vegetables to stick all over his bedroom wall. I’m hoping to employ a similar tactic to what I learned in psychology – subliminal messaging. The idea was if you saw a glimpse of something briefly – like an ice cream – it would brand itself into your brain and suddenly, inexplicably, you would want to eat an ice cream. It was so effective I believe it was outlawed in advertising. This idea that showing such quick clips – so quick your brain barely registers it consciously – can alter your behaviour and make you go consume an ice cream is a tool I want to harness! It’s not quite the same to plaster my son’s bedroom wall in pictures of food, but I am hoping it be a little bit similar.

My hope is he can’t help but be enticed by containers and cupboards – and in the process of playing, he tips out food and handles it (win). A mega win will be when he brings that food to his mouth for a quick taste. My older son is allowed to treat this as his new “kids pantry” and help himself to the dry foods stored there. I am also dehydrating bananas and apples today as more sweet dry food to place there. Cayden struggles with sticky sensory sensations – a must when engaging with food – so I am starting with dry foods he can tolerate touching. It’s play based learning, right? 🤪

His new speech and language therapist who just met us said Cayden is progressing through oral aversion faster than your average. I’m thrilled. It’s great to know our improvement at glacial speed… is great.

I’m really praying and hoping that this latest idea helps desensitize Cayden to food and makes him want to engage with it… here’s praying for a child that can feed himself within a year.

Yep. I am praying for a miracle.

*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.