Category: Wellbeing

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.  

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.