Category: Marriage

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.

Relationships in the Trenches

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

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

I was devastated.

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

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

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

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

The question is where we go with those questions.

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

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

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

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

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

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

But that’s not reality, is it?

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

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

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

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

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

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

How did that separation scenario benefit… anyone?

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

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

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

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

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

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

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

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

There is power in our choices.

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

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

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

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

Building Resilience

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

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

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

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

Ending up in hospital myself was a wake up call.

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

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

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

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

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

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

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

I sourced a sleep app to help me.

I saw a naturopath for more herbal support and supplements.

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

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

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

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

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

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

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

The amount of sickness we deal with is relentless.

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

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

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

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

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

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

Survivors Together

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

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

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

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

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

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

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

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

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

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

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

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

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

We have become survivors. Together.

Marriage: A Unique Partnership

by Karen Loo, posted in Marriage

wedding_rings

I’ll admit it. I was three years old when I proposed to a fellow young man.

Alas, my heart was broken. He was not yet ready for marriage at that tender age. (Was I?!)

Later on I tried dating. The boys at school who didn’t believe in God were probably not the best candidates.

When I was sixteen, I heard about the idea that you could just wait and pray for the right person. So began nearly a decade of just that; waitingggggggg and prayinggggggg. (You can imagine I wasn’t very patient).

I was 27 when I met my incredible husband. I learnt a lot through the process of getting to know him and later marrying him.

Firstly, relationships take risk. After so long trying to wrap my head around being a “contented single”, I had used that as an excuse to shut down my heart. I was bitter. I was angry at God that it had taken so long for Him to provide my deepest heart’s desire. It’s hard to receive a gift, while being angry at the Giver. My husband was excellent at chipping away my defenses. He knew I had to be really honest about any fears lurking underneath (inadequacy? Whether I was “lovable” enough?) to be able to work through any issues that cropped up. With God’s grace and my husband’s help, we were able to build a platform where we could be really honest about where we were coming from. Then it was just finding ways to work through those revelations. Risking honesty around the fears and baggage we bring is one of the best ways you can honour each other. You need to know who you both really are before committing to a life-time marriage.

I realised that sometimes relationships don’t look like how you imagined. I thought I would marry someone with cross-cultural experience who wanted to do missions around the world. The man God gave me had been brought up cross-culturally. He came from another country, even. He wanted to travel as well, but for a different reason and purpose to me. In the early stages of our relationship, this caused me to question God. Aren’t we meant to have mirror-image goals and dreams for our lives? My conclusion was that God is much bigger than we are. I continually sought God’s advice over our relationship. When God kept reassuring me that my husband was a great man to marry, even though I didn’t have every question answered, I chose to believe that and trust in this relationship God had given.

Another thing I’ve learnt is around honouring each other’s needs. No matter what, the person you marry – will be different to you! They’ll have different needs, goals and desires. Our job is to discover what those are, and see how we can support them. This needs to work both ways. I think we need to plan to have conversations around how we can meet each other’s needs. If we don’t verbally communicate our needs and desires, how can we expect our partners to instinctively know them? Once you have both communicated your needs (and these may change in different life seasons) it becomes a dance for how you will best use your limited time and resources to meet as many of each other’s needs as possible. But I can testify, that knowing your partner has your best interests at heart (and vice versa) through seeking to meet your most important needs, will build an incredible strength to your marriage.

For people that are newly married, engaged or single – I think you have an incredible opportunity. Often the habits we build at the start of marriage will stay with us throughout our marriages. Why not build the absolute best marriage we can – from the start? Don’t rely on romantic feelings to see you through. If you start your marriage intentionally seeking to bless the other person and build them up, you will see amazing rewards. That act in itself will become a positive habit throughout your marriage. It won’t feel unnatural to suddenly try to praise the other person when in the past you’ve relied on feelings (or the actions of your partner) to spark a positive outburst. Your partner should know they are the apple of your eye. Be deliberate. Look for things you can encourage and praise them in. Thank them for their hard work – whatever they do. Build them up in front of others. Show obvious pride in your partner. It will mean the world to them.

Provide a safe place. The safer we feel with our partners, the more vulnerable we are free to be. Vulnerability, handled well, is a cornerstone of trust and intimacy. Knowing your partner’s innermost thoughts and history gives you an understanding of why they react the way they do. Knowing that if they have a bad day, they can come home and receive comfort (not judgement, disinterest or harshness) creates a safe team environment. You get to be a unique team. It’s the two of you, facing life’s challenges together. Pulling through challenges together lessens the likelihood of you both pulling apart.

My husband and I haven’t been married long. But I have great hope for our marriage. I have seen demonstrated every day the intentional attitude we both have toward building the best marriage we can.

In every situation or interaction, we get given a figurative brick. We can either use that brick positively to build a foundation of love, care and honesty, or we can use that brick negatively to hurt and clobber each other. I know which way I would rather choose. Therefore I will continue to do my best every day to honour my husband by building him up verbally, being honest in our relationship, and providing a safe place that both of us can look forward to sharing.

How will you build the best relationship or marriage you can?