Audrey (bereaved mother of Robbie)

While I had always recognised what a headstrong and unique soul my son was, it was only in his death did I truly realise the extent to which ‘humanity’ (as we experience it) is entwined with the ethereal.

June 6, 2022 marks four years since the passing of my only child, Robbie. On that day in 2018, he was four days short of turning 2 years and 10 months old.  He’d been diagnosed with Neuroblastoma cancer in November 2017.

By the time we had admitted ourselves to the Emergency Department (ED) of (what was then) Lady Cilento Children’s Hospital on June 6, 2018, Robbie had experienced numerous rounds of chemotherapy and surgery.  We had only left the hospital 24 hours prior, after an extended stay due to seizures and other complications.  We were cranky, frazzled and exhausted, though this was rather ‘state normal’ after 6 months as an oncology family with multiple lengthy hospital stays. Robbie had never acclimatised to hospital life, and was fussing, rolling and pulling at the lines and traces the ED nurses were attempting to use to read his vital signs.  My (then) husband, Robert, went off to the bathroom, I was holding Robbie’s hand trying to get him to calm down.

I started to sing a little song that I had made up while he was in ICU two months ago after his two surgeries to remove as much of his solid tumours as was deemed safe.

I only sung it once before I felt tears well up. Now, I believe that my reaction was my body’s intelligence that knew what was about to happen, but at that stage, all I consciously thought to myself was ‘wow, I am so tired, it’s okay, just take a breath’.

And then to my relief, a minute or two later, Robbie rolled towards me and appeared to settle. I thought he’d finally fallen asleep because he’d not slept in over 15 hours. I was still holding his hand, but had turned away and was chatting to the nurse. Robert came back and said “He’s not breathing!”. I said “What?” and turned back around, the nurse followed me and effectively, all hell broke loose. The emergency button got pushed, alarms went off, streams of staff came running, and we got stuck at the head of Robbie’s bed. Eventually someone noticed that the parents were still in the room, and escorted us to a small waiting room and asked us to “please stay put”. It was a tiny little room, three chairs, a sink and a hot water tap with some tea and coffee. Robert was frantic, and angrily paced the 3 steps up and 3 steps back that the room permitted. At first, I tried to calm him down, but I soon realised that was an impossible task.

I recall so vividly that my head was pounding, I felt so nauseated, I sat down in a chair and stared at the blank wall. Suddenly my vision was not of the blank wall, but of the ED triage room that I had just left. I couldn’t ‘see’ Robbie, there were too many people swarming over him, but there was this enormous pink cloud-like ‘blanket’ covering the triage bed. It was the most gorgeous pink I have ever witnessed, much like a magnificent sunset that is pink and purple (rather than red and orange).

I just stared at it … I don’t know how long for … and then the pink parted, and I saw Robbie’s heart … and it cracked open like an earthquake and the most astonishing red came out … the closest description would be like lava coming out of a volcano. I ‘heard’ myself, very calmly think, ‘Oh! Well … that’s either Robbie’s life force flowing again so he’s alive … or that’s Robbie’s life force leaving and he’s died’. It was such a ‘calm’ thought as if I had split into two people, and one member of ‘me’ was pointing out something very logical to me. Yet I was simultaneously in so much visceral pain in my body, and so close to vomiting.

I then realised I could ‘see’ Robbie up in the corner of the ceiling of the ED triage room. He looked confused, like he’d awoken with a start and wasn’t sure where he was. I called out his name a few times gently (presumably in my head since I doubt I could have spoken aloud at that stage), and he finally seemed to notice me.

While the nauseated, frozen in tension ‘me’ watched, the very calm version of me said “Robbie, if you need to go, Mama understands and will support you, but it’s not good to stay in limbo, there are long term consequences for the body that aren’t good if you stay out too long, so you need to make up your mind”.

He looked down at me, and an image of a ‘big boy’ bicycle (like a 6 year old would ride) flashed into my head.

I asked “Is that the bike you want to ride?”.

He nodded.

I said “Well, you can’t ride it if you aren’t staying. You need to make up your mind”.

I waited .. but he started to fade and then disappeared from my view.

And I never saw him again.

To give you the parallel physical world story, staff came in at some stage (10 minutes?), and said “we can’t get a heart rate, we’ll keep trying”. After 20 minutes, still nothing and they warned us to expect the worst. At 27 minutes, they came in and said “we have a heart rate”, so it seemed like perhaps he had decided to stay in order to get old and big enough to ride that bicycle. Robbie was transferred to ICU, however by that evening, we were told there was nothing more that could be done, and the machines keeping his heart beating were turned off.

I lived the intensely surreal, dual reality of, ‘it’s all okay’ calm ‘me’ .. and the ‘I’m in so much pain’ physical ‘me’ for the better part of two years since that day. In the meaning-making I have done since that day, I have come to believe that he as a soul and a being never actually came back. He left after our ‘conversation’, and it was just his physical body (but without his soul) that the hospital staff briefly ‘bought back’. My husband left our marriage a few months after Robbie’s death, and for various reasons, it is not possible for us to be in contact or be friends.

So … did sanity leave me on that day? Possibly, but I don’t think so. I believe that I was gifted the opportunity to say ‘goodbye’ to Robbie, and this is something I am incredibly grateful for. To honour that gift, I make a conscious habit of wholeheartedly walking back through that day from time to time. When I quail at the thought of doing so, I use this quote by Brene Brown (The Gifts of Imperfection) to encourage me:

Each time I relive the darkness of that day (and the journey that preceded it), I see more and more of the light that is my son’s right to choose. His right to choose life, to choose his life experiences, and to choose his death. I am so proud of my son for teaching me how to live ‘empowered with choice’, at the juxtaposition of life that is both ethereal and human.