Our journey so far and where we could go from here...

Below is a transcription of the video

Part 1 – Me, myself and I

Hi, my name is Ben and today I turn 40.

You might be wondering why a middle aged, short, bald, slightly overweight man with pretty bad anxiety and depression is starting a youtube channel, and well, I can tell you now that regardless of who you are, where you’re from or what circumstances you have brought you here, this video will be worth your time.

If you’re starting at the timeline though and feel like you literally can’t even then there’s a short version linked in the description but I hope that, at some point, you come back here to watch this video since there’s so much that I want to convey to you about why I’m starting this new, exciting and extremely daunting venture. Although I’ll never be able to translate all my thoughts and feelings in a single video I hope that by the end of it you will know me a lot better and I can feel that I’ve excised this tumorous weight that’s been building up inside of me.

I also know that this won’t be the video I’ve been wanting to make for over 2 years now. It just can’t be. Getting to that realisation has been an important step for me. Actually finishing and releasing this video is also another huge step. You’ll come to learn that most of what goes into this project is inherently difficult for me. It’s the antithesis of what my brain is comfortable with….but it has to be done because I can’t keep putting it off. I can’t keep making false starts. I must have written 2 dozen unfinished scripts, fallen into the toolbox syndrome of thinking I had to have this other piece of equipment in order to satisfy my own requirements for production quality…then getting something done only to start doubting myself or being overly critical. Add to all this the unrelenting time and energy of parenthood and…as you’ll soon discover, the complex needs of my son Taj well that 2 years starts to become a little more forgivable. But only to a point and as we all know time waits for no one. I feel I have mis-spent an unacceptable majority of my time on this earth and I want to change that. For me and for my family.

No one wants to invest their time in someone that they don’t know so I’m going to give you a very abridged version of my life to date. On this day 40 years ago, the 31st of January 1983 at a hospital in a suburb of Melbourne Australia I came into this world. The youngest of two brothers, to British immigrant parents I was born into a world of privilege. Not financial but circumstantial. A straight white male in a first world country. I dream of winning the lottery but…and only in hindsight do I realise…I kind of did from day 1.

I was pretty good at most things I tried. Solid athlete, got pretty good at tennis, rugby. I could play the guitar, sing, also did clarinet for a bit. Academically I did great. I did have one big flaw though and it festered and grew into a pretty terrible work ethic. I would realise much later and probably too late that this was a core part of my anxiety. I was extremely socially anxious, and extremely adverse to really giving anything my all. I didn’t need to in order to get by and I would never realise any of my potential because of it.

So school, university and my professional life all followed the same trajectory. A straight line. As I got older though, the comfort zone I had become so accustomed to began to show the inevitable cracks. Feelings of regret, realisations that I was crippling myself for the future by not doing sensible things with any money I had and thinking far, far too small. I had learnt to just exist in the life I had, not live in it. Sure I had dreams but that’s all they were. Movies in my head that I would play over and over again of this life that was potentially possible but only if I was my best self all the time and also with some sort of miraculous leap from where I am now to this imagined future.

Of course, aside from some extremely fortuitous event like….a lottery win, or any scenario my wildest imaginings could conjure was ever going to happen, even in part, unless I did what I hadn’t done my whole life…..the work. It’s an extended period of time completing the small steps in order to get to that leap of a destination I wanted to arrive at. Obvious when you’re looking down at your life from 10,000 feet but on the ground it’s a different story.

Although I do still imagine a different life, I have actually, for the first time ever, figured out what I want to do and I am dreaming of an attainable reality rather than finding an escape in the ephemeral. I’ll get to what exactly that dream is later.

Part 2 – The better half

Before I can get to Taj I have to talk about Liz. This one is difficult because she’s not really a social media person when it comes to sharing her own life. She’s on board with this but she’s also apprehensive. I think in time she’ll be much more willing to share her side of things and to be on camera and involved in the public facing side of it. Really I’m a little bit afraid of that since people will likely gravitate to her rather than me. Anyway I digress.

Our tale actually begins twice. Once when we were at the same school on the Gold Coast in the early 90’s. Our respective siblings in each other’s year, and again in 2014, both only living less than 100kms or 62.137 freedom units from that school …when we fell for each other in a whiskey bar in Brisbane.

Now despite her being with her workmates drinking that night I really can’t blame her for finally being into me this time around. I had hit my peak physical form….no not that one….that one…Yes I am taking this opportunity to show my only photo…..ok my only two photos of me posing for a selfie when I was working out. I know I’ll regret it but I am rarely a tooter of one’s horn OUTSIDE of my friendship circles, or really ever have a reason to do so.

Anyway, we hit it off in a big way and she declared her love only two weeks later. She’s going to kill me for this. I admittedly wasn’t far behind but I never miss an opportunity to mention that.

We are living together in 3 months, moving interstate in 6 months and pregnant expecting our first child in 3 years.

We’d done a lot in that time though. Established ourselves in a new city, started building our careers, paying off credit card debt, travelled, made amazing new friends and generally having a great time and enjoying life.

Since a baby was on the way, we had to move out of our shared rental and get our own place, I had to buy a car, we nested and did all the normal things a couple does when their first baby is on the way. In fact we did more on the medical side of things due to Liz’s past ectopic pregnancy and increased risk profile. At every point where bad news could come Liz and the baby passed with flying colours.

So life continued to plan as we got closer and closer to the due date.

Part 3 – What to expect when expecting

I recall vividly on our daily commute home from work where we would drive past the Royal Childrens Hospital that I didn’t care about anything, as long as we didn’t end up there.

You spend the whole 9 months experiencing this real sense of change in your life. You’ve anticipated what it might be like, seen it all in the movies and on TV, read about it, you’ve heard stories from friends and family, but actually experiencing it for yourself is something quite profound.

I mean there’s lot’s of time that you’re just living life, you’ve adjusted to it, you’ve gone to the check-ups, you’ve spoken to people ad nauseum so it’s mostly subtle…if not the new normal…we adapt…we become used to it. There are moments though, when it hits you and these happen more as you’re leading up to the big day. The water break, the contractions, the ride to the hospital, the birthing suite, the final moments before the baby is out.

I look back on that labour with so many mixed emotions. Immensely proud of how Liz handled it. So humbled by her experience. But also so saddened by it too. These are the final hours and minutes before your lives goes in a completely new direction. The miracle of life.

But…unfortunately for us, this miracle only lasted a few minutes.

Part 4 – Without warning

Then, very slowly, did we start to realise that something was wrong. He was moved to the resuscitation table and given some oxygen assistance via CPAP. It’s clear that his work of breathing is becoming worse. You’re given preparation for this to a degree. The baby will appear blue, it’s because the blood isn’t oxygenated yet. The baby may not be crying. Again it can take a few minutes for him to kick into gear… Be patient and don’t panic. I’m the type of person who tends to overthink and catastrophise things so I’m in this haze of becoming a father, cutting the umbilical cord and fighting every instinct that something is wrong because it’s probably not. No one is really panicking here. I’ve been told about the resuscitation table. This is probably just a hiccup. But, why are there like 8 people in the room now? This doesn’t seem right.

Then we’re told they needed to move him to a different room to monitor him. I still thought things were ok. I followed. In that room, people are more frantic. I had my little finger in the palm of his tiny hand as they’re attaching things to him and taking blood samples. The dread was creeping more and more in my mind but I stared at his hand trying to will something to happen. I needed him to move, I needed him to cry, to do something… other than struggle to draw his breaths.

Then all of a sudden bam. His little hand wraps around my finger so tightly and for the briefest of moments I’m elated. I’m thinking that this is it, we’re done, we’re past this really scary moment and it’s all going to be ok. And then his arms start raising up like this and I hear the word ‘seizure’. And all of a sudden I’m moved aside as more people rush around him…Then it’s all kind of slow motion. I don’t even really have a clear memory from this point forward. But I do remember outside of the room, being told by a doctor who I’ve never met before that he’s really sick, his blood is acidic, he’s hypoxic, and they probably need to move him to another hospital to be able to give him the treatment he needs. I was by a nurse if I needed anything ..a water or a tea…I’m in the most surreal state I’ve ever been in. It’s like this a tidal wave of emotions is washing over me. And it was there that I sat with a tea in my hand that I broke down.

And I had to go back to Liz and tell her that something was wrong and I didn’t know what it was or what was happening now or what was going to happen. At this point we hadn’t slept in over 24 hours, but we’re told that we have to pack up and move to another hospital. So we showered and I helped Liz, we got our things and instead of going home as planned with our new baby boy, Liz went with the PIPER team to the next hospital and I had to drive the car and meet them there. I called my mum on that drive and tried to tell her what was happening and I bawled my eyes out. I think that’s the first time since I was a kid that I have ever done that.

At the next hospital Taj is put on a cooling bed. Essentially they have to shut his systems down to prevent any further damage to his brain and then later that evening we’re told they he has a potential blood clot in his heart and in his brain, and it could be the cause of everything, but they’re conferring with senior doctors around the country because his presentation is baffling and they’ve never seen anything like it before. And they’re just really not sure what caused this to happen or how to proceed. So the decision then comes down to if it is a clot and we don’t treat it we risk the blood clot dislodging and him dying but in order to treat it we have to thin his blood and that can’t be done while he’s on the cooling bed. If we warm him we risk more seizures and further damage to his brain…and that could kill him as well. So weighing up all the factors and having all of the doctors consult together they decide to warm him back up so that we can move him in the morning to another hospital that has better facilities to be able to treat him and find out what’s wrong. Unfortunately during that warming process he did have more seizures.

We stayed in the hospital that night. In a stark room, together, trying to comprehend what was happening, not knowing if we were going to lose him or just how bad the damage was.

I didn’t tell Liz until much later that on one of my trips from the room to the bed to see him, I heard some new parents lose their child. And I have never heard screams of grief like that, in person. I’ll never forget that. But it also just highlighted what kind of a knife edge we were on and what we were potentially facing.

So the next day after somehow getting some sleep. Probably because we hadn’t slept in almost 40 hours we ended up at The Royal Children's Hospital. The one place I never wanted to be and that was to be our home for the next 3 agonising weeks.

Part 5 – Unexpected Journeys

These were our darkest times. The gravity of the situation was unbearable. The conversations with the doctors and social workers were ones you never hope to have. Still having no answers or even any certainty to his condition.

Having to turn off the life supports and let Taj fight his own battle.

Finding hope in early prognosis, then having that hope pulled out from under you when it was worse than originally thought.

Holding him for the first time, covered head to toe in wires and tubes. The dichotomy of feelings as you hold your first child.

In this darkness though we had some light. From the family that flew to be with us. To the support we were receiving from our inner circles.

To push forward each day. To learn about the brain and the body in ways you didn’t think you ever needed to. Trying to touch your feet on the ground through understanding.

Learning how to care for this precious but so broken little boy.

Liz had her first mothers day in hospital. Becoming a mother was such an intense journey for her having lost her own at an early age.

Liz’s resilience lifted me when I was lost. And when she fell, I lifted her.

Over a week later Taj starts to open his eyes. He shows us his strength and we start to become a family, as unconventional as it is.

He’s stabilsed enough for us to leave the intensive care ward for a brief walk outside. Your new reality becoming somewhere where you can find joy in the little things.

Then, after what seems an eternity you are able to leave. .. and finally head to where you always wanted to be with your baby. Home.

Part 6 – Home

Looking back on it now, I can see how much Taj has taught me. He's shown me that life doesn't always go according to plan, but that's okay, you just have to keep going, one day at a time. And to celebrate every small victory, no matter how seemingly insignificant.

He's also reminded me of the power of love and the importance of cherishing every moment with the people you care about. Because you never know how long you might have with them.

That first year though was so tough. There’s no manual for this. Brain injuries are like fingerprints, no two are the same. So we had to fly blind into this storm that we never saw coming.

Trying desperately to keep his weight up, to understand his dystonia, navigate the complicated maze of support services, medical and therapy appointments.

But despite having these small victories. We ended up in hospital. Time and time again.

Our visits would eventually make it into the hundreds.

Part 7 – Keeping us afloat

There are ways…in which we are truly blessed.

Friends we’ve had for more than 30 years, many for far less….but all who stood by us through the worst of it.

I can’t really ever express my gratitude for them enough to actually describe how important they are and were through our dark times.

We don’t have many friends but the ones we do have show me the best of what humanity can offer. We don’t see them as often as we would like but I know it doesn’t matter. There’s a bond that can’t be broken. They’re family to us.

They, and many we hadn’t even met before gave so generously to our go fund me. It saved us when our government funding ran out.

They’ve gone above and beyond whenever we have needed them or been able to come out of our shell to ask.

It really highlights the importance of surrounding yourself in life with people who care about you and of course, in turn who you can reciprocate that love and respect with.

We also had some invaluable respite services which allowed us some time to ourselves and together with Taj to relax and break up the slog of daily life.

Then in late 2018 we took our first flight with Taj to see family for Christmas where we discovered, very unexpectedly, that we were going to have another baby.

Which has many of its own stories but ultimately ended up being one of relief and happiness as our family became a little bigger.

Part 8 – 2020 and beyond

2020 started off with Taj in hospital. And I mean day 1. January first. Taj is hospitalised with 3 viruses and pneumonia.

Towards end of January Taj is back in hospital and Liz and Elijah are up in Queensland seeing her dad who has had a decline in his health due to the dementia he’s been suffering from for a decade.

Then in March COVID reaches our shores and we didn’t know it at the time but we were basically living in the city that was to have the longest and most restrictive lockdowns in the entire world.

One month into the pandemic, while we still didn’t have much of an idea about this new virus, Liz had some devastating news that her dad had experienced another, much more serious and rapid health decline. So she flew up, to be with her dad for his final days. Layered in PPE, not able to hold his hand without gloves, not having me with her for support. Just the worst way we could have seen the end to this incredible man’s life. On April 3 2020 Ross Duus passed away.

Taj got new equipment. He also got his PEG tube in so we could finally have his face free of the nasogastric tube. Unfortunately a routine procedure turned into a very rough, 10 day hospital stay. Not great at the best of times let alone in the midst of the pandemic.

Two things happened mid 2020 that would go on to have very serious effects that are still ongoing to this day.

My brother becomes a large voice of dissension online in regards to COVID and Liz’s stepmom decides to take legal action to try and secure Liz and her brother’s inheritances almost entirely for herself. We had to spend our entire life savings just to fight for what her Dad wanted in the will.

We were both working full time at that stage. Personally I had the busiest and important year of my working life and by the end of 2020 I was done. I resigned from my managerial position to become Taj’s primary carer and I resolved to finally turn Team Taj into something bigger and better. An attempt to and try to find meaning and purpose in my life and Taj’s life.

Being the primary carer to Taj is a 24 hour job. Well being a parent is too but on top of all of that you have to also don a number of new roles, doctor, nurse, pharmacist, physiotherapist, speech therapist, occupational therapist and so on.

Taj’s official diagnosis is HIE - Hypoxic Ischaemic Encephalopathy. Enough time has passed for us to further diagnose him with quadriplegic cerebral palsy and on the Gross Motor Function Core Skills scale he is the highest. A five.

So while living with the reality of having a son who is, as the doctors put it, profoundly disabled, you also have to ensure that he gets the appropriate therapy every day as well as the medications that keep him alive. Just to stave off the inevitable.

A “life limiting condition” is another new term we learn that means he is extremely likely to no make it past his teens. Knowing you will have to bury your child but having no idea when is a weight that I sometimes can’t cope with.

We do have carers to assist. However we only have the funding for about 10 hours of that per week. He also gets sick. A lot. And carers aren’t able to come when they are sick so we experience a lot of uncertainty when it comes to having help. Or any way to guarantee my time to you know…finally earn some money for my family which I’ve not done for 2 years.

Each day Taj has 7 different medications, administered 20 times at 6 different intervals from 7am to 9pm. I have to draw them up to the exact milligram or microgram. These all have to be labelled and bagged in case he’s being given them by a carer or we go out anywhere. They have to be with him wherever we go.

That’s for a good day. On a bad day we have to manage him with extra doses of certain medications under strict guidelines or hold off certain medications in order to not make things worse when he’s getting sick.

Our requirements also have changed. We are in a time sensitive situation to sort out our home in order to fit in the equipment required and have the home made accessible.

Part 9 – Where to from here?

I suppose it’s a combination of what I’ve been through as well as getting older but my resolve to live a life that’s better, that’s meaningful has hardened to this point where I can clearly see a path forward. It’s like I’m building a ladder to escape this pit I’ve found myself in.

I also know that I can’t do it alone and Team Taj is that ladder not just built by me but hopefully many other people.

I’ve realised a lot of what is wrong with our society and, at least for the things that I can control, I know I can try to do something about it.

In time I will be helping others but in order to be able to do that properly I need to help my own family and our biggest and most pressing issue is our home. Within this initial project there are a plethora of things that affect us all and for each problem or choice we make I want to rethink the way we approach it.

Rather than just buy the cheapest or quickest available thing, or even the best reviewed, I want to place accessibility and sustainability as priority number one. Companies that are taking it upon themselves to operate ethically and treat their workers right are the ones to get our business and I’m hoping that other people will start to reward this too.

Housing, something that should be a human right, has become a commodity that is pushing more and more people out of it. Especially here in Australia. The homes that are built both past and present are extremely inefficient, powered by non-renewable energy and not designed to last or accommodate anyone with a disability or for the ageing population.

Universal design is the approach that I will be implementing and being a tech guy I want to find the best way that technology can supplement this.

So what I need from you is to share this far and wide because I’m trying to build a community that share these values and have the skills, expertise or lived experience that will help to piece this puzzle together.

I also want to help others share their stories. To find support and acceptance by communities coming together under a common cause.

This may be a pipe dream but it’s one that I’m dedicating myself to. I want to create blueprints for other people to follow and build upon that cover all aspects of the way we live in this modern world that is becoming increasingly under threat due to how we have placed profit above all else.

Part 10 – Let’s get started

This video hasn’t turned out anything like I had envisioned but that’s ok.

It’s done, it’s out in the ether and I can actually start this journey properly.

I will be making more videos, on many different topics and I promise they won’t be 2 years in the making. I’m over the first big hurdle.

I have, however, realised that it will take time for me to put them together and there’s no way I can grow this channel if I’m only putting out videos here and there.

I also want to work with you, in real time and have conversations with people that you can contribute to and be a part of.

So in the immortal words of Bill O’Reilly ‘f**k it, we’ll do it live’.

Each week I will be doing at least one live stream, hopefully more, but that all depends on Taj’s health and well a bunch of other factors as well.

Stay tuned for more details on the schedule as I don’t want to say anything now that I can’t make good on.

I’ll be streaming right here on Youtube but you can follow along with our other social platforms as well.

So now it’s time to see where this new path leads and I’m hoping you’ll come along for the ride with us.

Let’s learn and grow together.