There Is No Better Education In Love, Compassion And Empathy Than Having A Child With Special Needs

A few weeks ago we went to a fundraiser. It was a black tie event to raise money for the family of an old colleague of the old man’s whose son broke his neck and damaged his spinal cord in a freak rugby accident recently.

Alex Noble is their son’s name, and if anyone feels like funding a real cause, as opposed to other, less noble causes, please feel free – here is the link to his GoFundMe page.

At one point in the evening, Alex’s parents stood up on stage to tell us a little about his story, his progress, and their plans for the future – should they reach their target that night to secure the funds they need to renovate their house, meaning he can eventually come home.

“There’s not a lot of joy in my life right now, but there’s a lot of love,’ his mother said.

It was a comment that hit me hard, because albeit that in terms of bums on seats that night, there was a wonderful level of support in the room, as a mum who is also a part-time carer of an adult dependent, (as well as being a professional cynic), I did wonder how many guests would be there for the long-haul of Alex’s journey, once the glitter is swept away.

Many of the guests were close friends of the couple or friends of their son, so in some ways it felt almost voyeuristic to be there, to witness the pain and rawness caused by such a cruel twist of fate; to sense the fears that his family feel in terms of the uncertainty of Alex’s and their future.

When we plan our children, we never anticipate for one moment that things won’t work out like the parenting manuals told us they will, so I understand what Alex’s Mum was trying to say. I’ve felt that way many times with Kurt – because let’s not underestimate the devastation caused by mental illness or disability, either. Indeed, it was only a week before that I thought that we had lost our son?

Scratch the surface and there is heartache in every family. I can’t tell you the number of times people open up to me about siblings or relatives with mental health issues who have been hidden, the skeletons in their cupboards.

But Alex’s Mum was right about how adversity cultivates love. Because in return for the pain caused by our son’s neuro-diversity, we have been given an education in love, compassion and empathy, and we are better people for that. We are as proud of him as we are of NC – much to her horror. While his steps forward have been slower, they have been celebrated with the same enthusiasm as hers, and his progress has provided us with an invaluable insight into how society should be measuring success.

Admittedly, there have been times when there’s not been a lot of joy in caring for someone who may never get better, and I wouldn’t wish our experience or that of Alex and his parents on anyone. Before his accident, they would have been looking forward to the last chapter of their lives as independent once again, but the ramifications of his physical disability may be lifelong, and they will affect not only them, but his siblings, and possibly future generations of their family.

I’m glad that they feel loved and supported. I hate cliches, but shit like this does make you stronger, because you have no choice but to be strong. But as I said, there are hidden benefits to life’s knocks such as this. While they will have to reset their expectations of Alex, his milestones will be as meaningful as those of his siblings – if not more so. And though it may feel painful at the time, this tragedy will draw a line in the sand between their true friends and their fair weather friends, because they won’t have time for games.

But they will be tired all of the time and there will be days when they feel like they can’t go on and will question why me? So I suppose what I really want to say to all those parents battling through each day with kids with disabilities or dependencies, is that your joy may well be diminished, but like a flower in summer, your heart will be opened to maximum capacity.

This Is How A Middle-Aged Couple With Anxiety Books A Holiday

There are certain undeniable factors when two people with anxiety get married. 1. There will be a lot of overthinking, and 2) We can talk ourselves out of pretty much anything.

Raising a cocktail toast in front of a beautiful beach.
Photo by Toa Heftiba on Unsplash

Such has been the marital soap opera created by my decision that we go on a proper holiday this year – a decision that has at times felt like having teeth pulled without anaesthetic underneath the maskless face of a caffeine-addicted dentist.

Every possible destination was considered during our intense negotiations – including some of the great ones suggested by some of you – until eventually we managed to narrow the choice down to three – once terrorism, risk of gastro, length of flight and language had been taken into consideration.

New Zealand, Vietnam and Hawaii.

Uncharacteristically generously, I gave the old man the final choice, and after much shaking of his head and chewing on his lip, he opted for New Zealand. Too easy, I thought (misguidedly), as I launched myself into another week of unpaid work in the form of research – even procuring the services of a lovely local tour company who created the most perfect itinerary for us (that didn’t include Christchurch, due to its earthquake issues), and just about squeezed into the budget.

And somewhat foolishly, I truly believed that the holiday was done and dusted when I handed the itinerary over to my husband, chomping on the bit to get started on broadcasting the news to my fellow anxious travellers and friends on Facebook that I hate on a little bit more each time I see them downing Tequilas on another beach.

Then the old man decided that New Zealand is too cold in October.

‘Okay…’ I replied, through gritted teeth.

‘Let’s brave Vietnam,’ he said, three Whiskies into a Friday night.

‘Are you sure?’ I asked.

‘Absolutely. It’s time to push ourselves out of our comfort zone,’ he lied, in what I now recognise was a very clever delaying tactic.

And so another intense week of research followed during which I pulled together a fantastic holiday that encompassed several days in Hanoi, a brief sejour in Sapa, and a week in Halong Bay. Indeed, so confident was I that Vietnam was our final destination, I had already checked out cooking courses, markets and hotels. But then I dropped into the conversation that the trip included an overnight train journey to Sapa…

‘What overnight train?’ the old man asked, a worried look on his face.

‘Relax,’ I said. ‘You get your own cabin and it only takes seven hours,’ I started to bluster as I tried to convince myself at the same time. ‘AND it will save us the cost of a night in a hotel.’

‘And there’s an overnight stay on a boat in Halong Bay, as well?’ he asked.

‘Maybe…’

‘On a boat?’

Needless to say, Vietnam was also quietly put on hold until we have earned our travel stripes, which left us Hawaii. However, too exhausted by this stage to think about it or to cope with the inevitable disappointment when my husband changed his mind AGAIN, I threw the ball in his court.

‘You bloody organise it,’ I said, passing him the gauntlet.

I picked the gauntlet back up a few days later and gave him a deadline of last weekend to book – otherwise all sorts of shit was going to go down in our place, I promised him, that amongst other things involved a 60/40 split of our accumulated wealth once we reached the divorce courts.

And, dear friends, we have booked a holiday, with only three months in between now and then to worry about what can possibly go wrong – ie. being approved for our visas, being forced to sleep in the same bed, driving on the wrong side of the road, whether we’re allergic to the pollen in Leis and if the timing of happy hour will work with nap time. So very soon I will be pissing you all off with my very own Photoshopped holiday snaps on my social media accounts of us topping up our Valium sipping Pina Coladas around our pool.

The Meaning Of Life: And Why People Who Live In Hot Countries Suffer From Depression Too

Kurt experienced a few personal setbacks a few weeks ago and because I know that many of you follow this blog because you too have young adults who struggle, I thought I’d take you through what we’ve learned from it. Obviously, I won’t go into precise detail about what happened, but suffice it to say that after more than a year of giant leaps towards a balanced, happier life, his world came crashing down around him and he felt unable to cope.

Man looking out onto world.
Photo by Larisa Birta on Unsplash

We’ve all been there – those parts of growing up when it feels like life is conspiring against us, leaving us no way out. But it’s worse when you have a disability and the lack of a good emotional skill set and resilience to cope with it.

His cry for help coincided with my first day in a new position at work – a position that I know is within my field of expertise, even though my anxiety consistently tells me that I can’t do it – so, needless to say, I was already in an emotional tail spin that morning when he started calling me. In hindsight, I think that I may have over-reacted to the situation.

My therapist tells me that anxiety can be contagious in some families, like a chemical reaction, where the molecules keep bouncing against each other, escalating it. Apologies for my simplistic interpretation but I never took Chemistry seriously at school. However, I did manage to stop my eyes glazing over as she was explaining what she obviously believed was a useful analogy to me. And I know that I use this expression all of the time in this blog, but sometimes it really does feel (for a lot of us) as though we will never get our shit together and that life takes some perverse enjoyment out of kicking at us when we’re already on the ground. Fortunately for us oldies, though, maturity and experience help remind us in those moments that we will (most likely) get back up on the damned horse, whereas Kurt is still young. He has yet to understand the difference a year, a day, or even an hour can make to how he is feeling in that moment, or how different those areas of his life that he struggles with today may look in ten years time.

When you’ve been misunderstood and had to fight for acceptance for most of your short life, resilience is hard to build.

However, a week on, I am happy to report that he is in a very different headspace. In fact, a few nights ago the family got together for dinner – Waltons-style (not quite) – I watched the light return to his eyes as he held court at the dining table, and it was almost impossible to believe that this was the same, broken young man from the week before.

Watch any documentary or reality show on the topic of depression or suicide ideation and you will see that most people regret their attempt if they survive to be given a second chance at this crazy thing called life.

We live in a crazy world, and not even maturity hands over all the answers to our reasons for being here. So it’s understandable for an over-thinking twenty-two-year-old, whose brain is still developing, to lose his way; to question if the pressure and suffering are really worth it, and (perhaps, more importantly), why the shit seems to be dealt out so disproportionately.

Hence, the rise in mental health issues in our youth.

I constantly question what we can change for this boy of ours to help him believe that overall the good outweighs the bad. That is the problem with depression – it is not something that you can fix by throwing money at it. On paper, Kurt has everything he should need to be happy. He has family support, a job and that sort of energising personality that Robin Williams had. ie. a convincing mask.

When the old man and I watched Chernobyl this week, I found myself looking at the bleakness of the Russian landscape in disbelief, wondering how any population could enjoy their lives beneath the heaviness of those grey skies and such an unforgiving political regime – let alone a dodgy nuclear reactor – and I decided that it is because they have known no different. But I was wrong. Happiness doesn’t come from the tangible stuff in our lives. It has less to do with blue skies and much more to do with living in a supportive community and having friends. It’s why the poorest in Africa and India are still happy. Seriously, Indian people are the most rounded, happy people I’ve ever met.

Blue skies help, but people who live in hot countries suffer from depression as well.

I keep telling Kurt that dealing with life’s crap makes you more resilient, even though I’m still trying to convince myself. I’m not comfortable using “stronger” in this instance – there are many days when I feel far from strong, but I hope that he builds the resilience to hang in there long enough to experience the good bits about this world. Ie. the myriad of wonderful relationships and experiences that are within his grasp if he allows his stars to align. But then that does require a certain level of positivity, hence the Catch 22 fuckery of my parental wisdom.

I suppose that the real crux of the matter when it comes to the meaning of life is that, in truth, there is no real alternative.

Food Packaging: Has The World Gone Completely Mad?

I am slowly educating myself about my personal impact on the environment. It helps when you have a daughter who works in climate science, and who helpfully reminds you each time you forget your recycled bags at the supermarket about how many turtles you’ve just killed.

Photo by Vivianne Lemay on Unsplash

I admit that, (for my sins), I am still using wipes. Responsibility is a permanent battle between turning your back on the wonders of modern invention for the sake of something that still doesn’t feel quite real – at least for some. And what a bloody fantastic invention cleansing wipes are!

Needless to say, my education about how to respect the environment has been an embarrassing slow burn for my daughter The reef dying and the ice-caps melting doesn’t mean a lot until you are directly affected by it, and if I’m honest, (being somewhat set in my ways), I am only just coming to grips with my phone’s secret updates.

However, when you read articles like The Wasteland by Stephanie Wood in last weekend’s SMH, there’s no ignoring what’s happening.

While NC has done a great job of educating me about recycling, conserving energy, and sustainability, the issue of food wastage hasn’t come up yet – probably because it’s never been an issue in our house. Which is why the work of organisations such as Ozharvest (that Stephanie mentions) – a company that collects the food waste from supermarkets and hospitality to recycle it for the homeless and others in need – was such an eye-opener.

Interestingly, a friend and I had a similar idea (on a much smaller scale) a few months back, when we considered extending the idea of Kurt’s care packages, (ie. the several meals a week I deliver him to help him survive the days between one pay day to the next), to a batch for the homeless each month. Sadly, however, our idea was met by such a horrified response from our friends – who worried about the legal ramifications if we killed someone – we were forced to rethink.

What a very sad world we live in?

So while I may not be able to check which of the homeless are gluten-free, what I can do in my mission to become a middle-aged eco-warrior, is reduce the amount of plastic I use and increase awareness about the damage done by excess packaging. I was pondering over this very thing when I was in Woolworths the other day and I spotted these bags of fruit.

Yes, look again – your eyes do not deceive you. For these are indeed individually packaged bags of sliced apple for kids lunch boxes, helpfully contained in another package.

Now, my husband will verify that I can be a wasteful person and I am also fully aware that more and more parents work full time and don’t have the time to carve flowers out of carrots – hence, I will try not to cast stones – BUT WTF IS GOING ON? Our kids are marching in the streets, telling us how scared they are about climate change, and we can’t even slice an apple now?

Why do we need to package our fruit in plastic trays and then wrap it again in a second layer of plastic? Doesn’t it seem a little crazy that that we march happily around the supermarket feeling all smug about our recyclable canvas bags, when we’re carrying enough plastic inside them to cancel any benefit? In the old days – as in the Medieval times when I was a child – our parents took one bag to the market for their fruit and veg, which was poured directly into it from the scale. It was probably how I learned my basic maths skills. And in countries where diet is based on a farm-to-table principle, people continue to manage to cope with that system.

Aside from the addition of unnecessary landfill, the threat to wildlife and the environment, and the fact that the planet may self-combust in a few years, what does such a blatant lack of responsibility say to our kids about our privilege and our priorities?

I suspect that it’s that the world has gone fucking mad.