How I stay positive when the world around me is falling down.

I’ll be the first to say that we all deal with our own fair share of shit in a lifetime, but I feel, personally, the first 18 months of my first born, Ari’s, life, our family – has had a pearler.

I wrote this as I sat in the midst of a pandemic in the most bizarre and uncertain circumstances it’s easy to be told to stay positive – it’s another thing to actually do it. So, first I’m going to share my story and then I’m going to share my 5 approaches.

Some of you may or may not know about my son Ari, if you do, feel free to skip this part and head straight to the approach – if not, here we go.

The backstory

When Ari was just 2 and a half weeks, I took him to the GP for a precaution visit after his poor twin cousin (born on the same day) had come down with Bronchiolitis and was hospitalised. Y’know, new mum stuff. At the time, he wasn’t gaining weight and we did the standard strip off and weigh in and it was here she noticed a slight yellow ring around his belly button and ordered a blood test. 24 hours later we received a call telling us to go straight to the ED for an emergency paediatric review. Skip past 3 nights of admission at our local hospital with blood tests and ultrasounds then a readmission to Westmead Children’s Hospital for ongoing tests, including a dye that ran through his body, the diagnosis came in – Biliary Atresia. A rare liver disease that causes blocked bile ducts. Cue why he wasn’t gaining weight (bile breaks down your food and helps with digestion amongst other things).  

At exactly 4 weeks he underwent a Kasai Procedure where they basically replumbed his small intestine to connect directly to his liver to drain. The possible outcomes were 30% success for life, 30% initial drainage, and then a liver transplant later in life, or the remaining % – complete failure and instant transplant. We ended up being the second. At 3 months old, he developed a case of cholangitis, a bacterial infection causing inflammation to the bile duct system (this was a common side effect from the surgery), probably resulting in his Kasai failing. Meaning now, we’re on the transplant list.

Skip to May 2021 and we’d undergone countless blood tests (he was a living pincushion) monitoring his liver functioning and other blood levels. Alongside an additional 6 hospital admissions, spanning from 2-10 days (including a transplant workup). And, as I wrote this, he was with my husband in our local hospital, again.

Each time he spiked a temperature above 38, we have an admission to the hospital where he has a mandatory 48h minimum (up to 10 days as mentioned above) stint on IV antibiotics to prevent further infection (hence why he’s there now). In March 2020, he had a serious case of ascites (belly full of fluid) where they needed to give him a blood product via an IV to provide additional protein to his blood, alongside a diuretic, so he could remove the additional fluid via urine. A common side effect when the liver is overworked. Another side effect, hernias. He now has 3 and they were pushing into places they shouldn’t have been, and it wasn’t a nice experience.

The point of this? It was not only an emotional time but mentally and physically exhausting.

Our life had no normalcy, just when we got back on track, life as we knew it was turned back upside down, and we were back in the thick of it. Work was interrupted for both of us, and it had a huge toll on our mental and physical health.

Add the pandemic to the list and we were in talks of reduced transplants, standard viral infections, and the high risks of being immunocompromised in the landscape. ARI is one of the vulnerable. Post-transplant we were told we’d be in isolation for 1-6 months (we ended up in there for just shy of 3 weeks), and seeing so many other kids and their families living their circumstances for years on end, the whole ‘lockdown’ and isolating in our own home didn’t seem so bad to us at all.

This brings me to the situation we’re facing worldwide right now. While I don’t want to offer advice on how you should approach your feelings, I, as a mother of a child that could have potentially died due to our circumstances, whilst facing the risk of losing a business during Covid – am sharing my approach with you.

1. I change my perception.

I’m often met with ‘don’t worry things will get better’ or the ‘if this was meant to happen to anyone, it was you guys, because you can handle it’ and while both sentiments are meant to be supportive, at the same time they’re almost insulting:

1. Because people don’t know what you’re going through, so they can’t know they’ll get better and;
2. So, they think because we’re strong minded people that this is any easier?

Now just to clarify, I eventually realised that the comments above were taken a certain way because I allowed them to be taken that way. It wasn’t their intention; it was just my reaction, mindset, and emotions that allowed me to think that way.

It’s easy to see things one way, but over the years as I’ve gotten wiser (*cough older* – don’t worry I covered my mouth) I’ve realised we just need to stop, breathe and listen. Watching the panic tear through countries and the chained reaction it caused throughout the community is a perfect example of this. We know that the pandemic is serious, hell this is LIFE threatening to some (add it to Ari’s list). Though it’s important to ‘stop, breathe and listen’.

Before flying off the handles in a fit of panic, I always ask myself:

1. What’s happening?
2. What can I do to change it?
3. What steps do I take to approach it?
4. What positives can I take from it?

Sometimes there is nothing I can do to change it, but the point is to not cloud myself with negativity and panic because my body will fly into fight or flight, but to approach it with a level head and to try and see different ways to approach the situation.

Take the virus, for instance, I could be a blubbering mess at the moment the potential risks that Ari faces just add a cherry to the top of the shit pile. But as always, I did what I needed to do:

What’s happening?
There’s a deadly virus spreading quickly that puts Ari at an even higher risk.

What can I do to change it?
Nothing.

What steps do I take to approach it?
Educate myself. Don’t adhere to fear-mongering or the sharing of misinformation. Practice stronger precautions for isolating, hygiene and reducing contact with other people (unfortunately his cousins too). Listen to the health professionals, not my social network – the doctors know just a tad more.

What positives can I take from it?
At least everyone else is practicing proper hygienic measures, self-isolating, and staying away. In addition, the rate in the number of children contracting the disease is much lower than it is in adults (for the moment).

2. Don’t stress about something unless it’s happening

Easier said than done, I know. Though I know I need to stay focused to make rational decisions. If I focus on the negative, my brain starts spiraling into a state of negativity. On top of that, if I begin worrying about something that may eventually sort itself out, then I’ve just placed a whole lot of unwanted pressure on myself which wasn’t even necessary.

Understand that I don’t mean that I do nothing. I take action and get into damage control. Figure out ways that I can change my circumstances, because if I’m successful at it, then the stress disappears along with the problem.

When we were first admitted to Westmead Kids, one of the nurses there reported us to the front desk. We hadn’t done anything, he was genuinely concerned Ryan and I were in shock, but we were both attacking the situation from a place of calm (yes for those who know me, I can be calm). Our attitude was – we can’t control the situation, we certainly don’t want to add to it, we’re in the best place possible and we’ll just go with the flow until we know what to do. We wanted to make sure that Ari could live a life as normal as possible, so we carried on as if everything was fine. And y’know what, credit to us – he’s the happiest most resilient kid going around.

Words we’ll live by from that nurse – don’t live the diagnosis.

3. Surround yourself with positivity

While some days I admit it’s actually fine to sit in your sadness and just be, I know that this can’t be a repetitive thing. So, each day I try to surround myself with things that make me feel good. I put on music that radiates happiness and feel-good vibes. I light candles that smell as good as something you can eat. I continue with my normal daily routine (get up, make my bed, get dressed, and then leave my bedroom) and I stand by that.

Even working from home. If you’re anything like me, still get up, get dressed for work, and carry on like it’s a normal day. Humans are hungry for routine, don’t change it just because you’re working from home.

Instead of getting sucked into the doom and gloom. Go Google cat videos or something. Look for the positive posts and scroll past the negatives. Force yourself into finding the things that make you happy. I’m not talking ‘toxic positivity’ I’m talking general feel good vibes.

4. Take care of yourself.

My gym and its community are like a lifeline to me – physically, emotionally, and mentally. After the long stints in the hospital, there was nothing, I looked forward to most than smashing out a group sesh with all of my gym mates. From a physical point, I’m not the meditating type, cool if you are, it’s just not me. I’m a hit the pavement, get sweaty, and throw some shit around type person.  

From a mental point, I’m an extrovert and thrive off connection. Being surrounded by so many of my friends, some of who I’ve been training with for upward of 10 years now, really helped. Talking, laughing, crying they were there. Offering food packages, hand sanitiser, and cleaning products for us when the shelves were stripped bare and simply just loving Ari.

I mean, Ari is like part of the furniture there, they’ve watched him grow from nothing to something. Hell, he was in my belly doing burpees and deadlifts (amended of course) with the crew right up until 36 weeks.

Believe it or not, work was amazing. I love thriving off the challenge that is business ownership and embracing the highs and lows as best as I can. As a creative, work is a great escape, it also gives me meaning and to know that I have an identity outside of the hospital.

So, when people say I hope you’re taking care of yourself. Yes, absolutely yes.

5. Reach out, and this goes both ways.

Everyone is going through shit right now – some more than others. But like I say to all of my friends, just because I’m going through something, doesn’t mean what they’re feeling isn’t justified. We all have our breaking point, some can handle more, some less and that’s OK. But it’s important that regardless of our own situations, that we at least reach out to say, ‘I’m thinking of you’. And I get it, some days we just don’t have the bandwidth to deal with another person’s problems on top of our own, and on those days, take care of yourself.

If there is one thing, I am confident in, it’s being in tune with my own feelings. I know that when I start to get really snappy that I’m about to break, and I need to step back. My husband knows this too and is usually on the receiving end (#prayforryan). When I break, I watch these vicious words fly out of my mouth while having this out-of-body experience where I try to stop myself but can’t – this doesn’t help anyone. So, I try to see the signs in myself to take a grasp on things before they get to that point. I have a responsibility as a wife and as a mother, especially being in situations like isolation. This is where my friends come in, and boy do they come to the party. There is support flying in from all directions and I am so grateful for that. Though I must say if I didn’t convey how I felt no one would know to ask, so it’s important that I reach out, tell people my circumstances, and bring them into my comfort circle.

Sometimes people don’t message you because they want to give you space, so just let them know it’s OK. Expressing my vulnerabilities was hard – but dealing with it all on my own would’ve been so much harder.

I know that how I feel is dictated by the choices I make with my own mind. In saying that, I know that mental health is a severely important issue, and just know that if you need someone to talk to or reach out to, please message someone.

If you need support or someone to talk to please contact Lifeline on 13 11 14.

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