How does a parent live, after watching their child die?

I’ve been reminded of the fragility of life. In two so very different ways.

This virus has made me sad to the core, because it’s changing some of the fundamentals of the way we do life. And while we’re locking down to try and prevent the spread of a deadly disease, lockdown is also increasing the frequency and impact of other social issues, like domestic violence, relationship breakdown and social isolation.

It’s checkup day. Tom’s has his blood pressure, sats, height and weight checked. Now we’re up to the echo. Otherwise known as limbo land. There is no other moment in life that makes me feel so much like I’m nowhere. We’re not living our normal every day life, we’re not in the clear, we’re not back on closer together checkups, and we’re not on a surgery waiting list.

Did you know that physiologically, both excitement and anxiety present very similarly?

I never used to be a fearful person. I wasn’t a stress-head or a worst-case scenario thinker. I had never had a panic attack, or even been close to one. But that was before our HeartKid was born.

It’s the giving in and giving out that I’m starting to think go hand in hand. If we focus on others alone, we can burn out and struggle ourselves both physically and mentally. Yet if we focus on ourselves alone, we’re missing the opportunity to gain perspective and see the good in our situation.

Most people know one of my ‘lemons’ is the Congenital Heart Disease (CHD) our oldest son was born with. But this past year, we’ve had another health-related lemon land in our court.

It’s like a little firework of thoughts goes off in your mind in about 5 seconds flat. There is a mix of actual rational thoughts, like the question of our coping ability at the moment, then there are the crazy, not so important thoughts, like being able to water the garden tomorrow.

What is it about our Australian culture that make us feel the need to speak? What is wrong with silence? Or just a hug? Or an ‘I’m so sorry’? Why do we feel the need to make people feel better, when there is nothing that can actually make them feel better at that particular moment?

Some Australian statistics, facts about my HeartKid, common misconceptions and the future.

I thought ‘that’s it, that’s exactly how I can manage unhealthy stress better’. So many things can push in on us and wear us down. Serious health issues are a big one which can just be so relentless. But there are many, many other causes of stress too. If you’re looking for ways to manage unhealthy stress, then check this out.

I find myself sitting in the same surgical waiting room at The Royal Children’s Hospital where we sat waiting to take our son into his second Open Heart Surgery. Today it’s just a meeting with an anaesthetist for some dental work, but walking in did make me take a short breath and catch myself. I wasn’t expecting today to be a day of flash backs.

Is the answer to run away and not say anything to someone in crisis? Avoid them at all costs? Never talk about their illness, sick child or family member? NO! People in crisis NEED YOU!

We were doing the school drop off yesterday, when our HeartKid randomly came out with:

“My biggest worry is my heart surgery, Mum. I hope I die before my surgery so I can go to heaven and have a heart that doesn’t need fixing anymore.”

And his eyes welled up with tears, with a face full of sadness.

This is the sort of every day stuff our HeartKid shouldn’t be able to do. He has severe leakage of his aortic valve and mild left ventricular hypertrophy. He’s had 2 open heart surgeries already and we’re waiting on the next one, which is going to be huge.

Not knowing what is around the corner with our HeartKid has taught me that I can't run at 110% all the time. It's not wise for me to run at full capacity with no space left. If I'm already running at a 10, where do I go if tomorrow our son’s heart starts playing up again and I end up in the Emergency Department?

What a heart looked like to me before our HeartKid was born.

There are points in time where the immense pressure of dealing with our HeartKid’s condition and additional diagnoses (currently a rapidly growing list) is incredibly overwhelming. I feel like I’m suffocating.