The loss of a child: ‘I kissed him on his forehead and I whispered I love you’

On September 13, 1979 at 6.13pm, I finally delivered my son Justin into this world – he was my third pregnancy. He was six weeks premature and the nursing staff had the humid crib ready for him to be placed into to help with his frail size and lungs. However, no one had told Justin not to be so big! He weighed 6lbs 13ozs (about 3kg) and was 40-odd centimetres long, he had his knees tucked under his chin. Yet, he was here and I was just so happy.

We stayed in hospital for 10 days as he needed to go under the heat lights to help with his jaundice. I was elated when finally we were able to go to our little home in Redwood Park, a suburb in South Australia where we were living at the time.

Justin was always in a hurry. He was only nine months old when he walked around the coffee table in the lounge room and then he just kept walking! I know you are not supposed to have favourites when it comes to your kids, but Justin was mine. I loved cuddling him, singing to him, playing with him, everything my parents never did with me. He was my best friend.

Justin was 16 years old when he started working at McDonald’s in Rundle Mall, Adelaide. I remember telling him if he could get a job he could leave school, never thinking he would secure one. This was the first job he went for.

When Justin was 17, his father and I separated. It was not amicable but I decided after 22 years I had finally had enough! The children came with me and I moved south of Adelaide to start a new safe life.

I noticed soon after that Justin had started to change. He would get violent and yell. It was quite scary and I had no idea until years later — when he was 21 years old — that it was drug related. I hadn’t even smoked a joint, so I had no idea how to help him.

One day I was driving him to work and I’d managed to catch up to the bus he had missed. I said I’d drop him at the next stop and then head for work as I was worried I was going to be late. Justin flew into a rage and started to choke me. I was grateful that a police vehicle had been travelling behind me and had put their siren on when they saw what was happening. Justin stopped and started to kick a stobie pole (a power line pole). I was a mess, but managed to pull myself together and went to work.

That was the day I called my ex-husband and told him he needed to have Justin live with him. I didn’t feel safe with him at home, especially not with the other children. When he turned up at the house to collect Justin and his belongings I was inconsolable. I could only hope I was doing the right thing. Justin stayed with his father and we saw each other from time to time.

Then I had a phone call. My ex-husband had called to tell me Justin was in hospital and that he was very ill. A further phone call advised me that my son had leukaemia.

Justin wouldn’t see me, but my sister made it her mission to get him to. It took a week, but finally I was able to see him. He’d shaved his head as he said his hair had started to fall out. I met his girlfriend. I was fortunate that my manager (I’d changed jobs by then) was understanding and encouraged me to go and see Justin every afternoon. It was at a time when no one else was there and it allowed us to reconnect. He told me a lot about his drug problem.

I remember the day like it was yesterday. I’d taken paperwork from work to do while I was with him and Justin and I were chatting like old times. A nurse came in and said Justin needed to drink all of this juice. He made a funny face at me while he was drinking. He told me he had a headache and I said he should get some rest. I kissed him on his forehead and I whispered ‘I love you’ into his ear. He mumbled back, “Love you Mum”.

At 3:13am, I received a phone call to say Justin had had a fall and he was being transferred to critical care. My head spun as I woke my other son and we raced to the hospital. I’m sure I broke speeding laws as I travelled down the Expressway. I was at the hospital by 4am.

I raced up to the ICU and asked the doctors what had happened. It appeared that Justin went to the toilet and collapsed in there as the nurse found him on the floor not making any sense. She managed to get him back to his bed and rang for the doctors. They came and Justin couldn’t stay awake, he went to sleep. My son was in a coma.

They didn’t know why this had happened and he was having an MRI. Once they had the results we would know more. They took my ex-husband and I to a separate room to discuss the results. They told me “your son has had a brain haemorrhage” and there really wasn’t anything they could do. He couldn’t have surgery because he was to weak from the chemotherapy. I remember asking if Justin was in any pain and the doctors told me he wasn’t. My ex-husband kept asking about rehabilitation, as he had also had a stroke and the left side of his body was all turned inwards when he finally arrived at ICU.

My partner David was in Melbourne on a conference for work and I rang him. He said he would try and get home as quick as he could. Qantas actually took someone off a flight to Adelaide so David could be on it after they’d confirmed it was a family emergency. I’m grateful for that.

I rang my sister and gave her the news and told her it wasn’t looking like he would come out of it. I don’t know where I found the strength. I asked my sister to ring my other siblings and my mother (who I had almost no relationship with) to let them know and asked if she would come and take Simon out of the hospital as I didn’t feel he should be here with everything that was going on. Comments were being made at me and they were only upsetting him.

I spoke to Justin that night when everyone had gone home. I whispered in his ear, telling him I was sorry for not being the mum he wanted and that I would make sure I did the best for his siblings. I know he heard me, his blood pressure went up! I held his hand and was just there when people came in and went.

My mother arrived and three more of my sisters. I hadn’t seen or heard from them in years so I didn’t say much.

After nearly 44 hours, just before 10:30pm on July 6, the doctor came to tell me Justin had no brain activity and for all purposes was only alive because of the machine he was on. They didn’t need my permission as he was 21 however, I gave it and they turned off his life support.

I stayed with him as everyone came in and out. I stayed holding his hand and talking to him about things we had done together when he was a baby. His favourite books, The Big Friendly Giant by Roald Dahl and Grug has a Birthday, silly things that I knew. My little boy was gone …

Have you lost a child? Have you or are you caring for a loved one with cancer?

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