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Sally and Conor’s story

 

Ten years after her son Conor’s death from liver cancer, Sally reflects on life as a bereaved parent. “You can be happy and sad at the same time.”

Conors story

 

December 2016 Conor was my second child - happy, healthy and beautifully cheeky. One day he came to me and told me his tummy was sore. My husband is a doctor so I sent him over to Daddy for a quick feel and tickle which usually fixed all such complaints. On this day however, my husband noted Conor’s liver felt enlarged.

The next day we had scans and tests and were told the news no one expects they will hear, “I’m sorry, your son has cancer.” He had stage 4 hepatoblastoma, liver cancer. We had a three year old daughter and I was 32 weeks pregnant. Conor underwent intensive chemo and had a 70% liver resection. Our third child, a brother for Conor, was born during treatment.

 

15 months later we were told there were no more treatment options for Conor. On the 22nd of July 2006, as I held my three year old boy in my arms and read him a story about a brave owl that was learning to fly on his own, my little boy took his last breaths.

 

My injury was invisible to others, but to me it felt like a hole had been cut out of me and I had changed forever. I recall often thinking how I wished those around me could see the gaping wound, could visualise the disability I had to overcome and could understand that every basic life task I faced was now a challenge for me. I had to learn to live again. Just as someone who loses a leg would have to learn to live life another way, I had lost my son and I had to learn to live without him.

 

In Australia the death of a child is thankfully less common than some countries. But it does happen and possibly more than we allow ourselves to acknowledge. The problem that parents of children that die face is that conversations about death rarely happen. When it comes to a child dying it is simply something no one even wants to think about.

 

Even parents whose children have been in the palliative care phase for some time are often not prepared for the moment their child actually dies. I remember thinking that I was the one holding Conor’s hand and helping him as he went through his treatment course - but as he took his last breath and his grasp on my hand loosened, I suddenly realised that in fact he had held my hand. He had given me a reason to keep going every day and now I was alone. I had no idea what would happen next.

 

As a newly bereaved parent I wanted so desperately to know I was normal, that what I was feeling was okay. Redkite’s By My Side book shows that every mum and every dad will have different feelings, different needs, use different strategies to deal with grief; it allows the reader to know that they are normal – because in fact when it comes to grief there is no normal.

 

About two years after Conor died I met a mum at school and it didn’t take long for me to find out she had lost her son around eight years earlier. I was so desperate to talk to her, I had so many questions, I needed to know how she had made it through the time. She allowed me to know I was normal and I knew I wasn’t the only one living with this pain.

 

I’m now that mum 10 years down the road. I carry my own lessons that losing a child has taught me. What I couldn’t understand in the early days, and that I now accept, is that crying is completely okay, it’s a just a part of life. In this day and age we are all made to believe that life should only be happy. But losing Conor has taught me that life is made up of good and bad things, as much as we would like to change that, we can’t. And in fact the truth is that without sadness we can never truly recognise and appreciate happiness.

 

I want my little boy back, I want to change what happened, but I do have to thank him for the lessons he taught me. So many people spend their time seeking a perfect life and rarely see that what they have is worth appreciating. So yes I cry, I cry because I miss my boy, I cry because I will always be missing a very special part of me, but I have accepted sadness. The other struggle a grieving parent has is guilt at feeling happiness. Over time I allowed myself to know that it’s okay to laugh. When I laugh it doesn’t mean I have forgotten Conor or that I am over his death, it just means I am feeling happiness that is still there. You can be happy and sad at the same time.

 

So my advice is for bereaved parents to know that what you are experiencing is normal, it’s just that the whole situation is completely abnormal.

 

Family and friends watching loved ones live with this grief must also be in such an unknown situation. I am often asked now, “My friend just lost her child, what I can do to help her?”  I wish so badly I had the answer to this but I don’t. I can only suggest you keep in contact with them, but never expect a reply and don’t be insulted by the way they respond, forgive them. Pick up the boring tasks that they just don’t want to face. Pick up the basket of ironing, take the other kids to the park. Don’t ever judge, don’t pretend to think you know what the grieving parent should do, or what would be right. Just let them know that you think how they are handling it is okay.

 

You cannot rush us. Please understand you cannot take our pain away whatever you try and however much you want to - just stay with us. I do encourage everyone in the community to remember this: never think while speaking to a parent who has lost a child, ‘What if I make them cry about their child?’ We are good at crying, we accept crying. For us, crying about our children is part of life and you shouldn’t fear it when speaking to us. What is worse is when we cry because we feel that someone has forgotten our child, or someone won’t let us speak of our child when we want to. Why is it okay to talk about your living child but people feel uncomfortable talking about a child who has died?

 

My advice for health professionals is simple. If you were part of a child’s life during treatment, please maintain some contact when the child dies. It was a lonely time for me when I went from seeing nurses and therapists regularly to never seeing them again. If you contact us, it makes us feel like our child made a difference to your life; when you lose a child, you need to know that others remember them. I still remember the one nurse that would send an occasional email to see how our family was, she would mention something she remembered about Conor, a small gesture that let me know my boy was more than just another patient.

 

Conor is more than just a three year old that died from cancer. He is a brother to three girls and one boy.  Two of my girls never met him but he is still an important part of their lives. When asked how many children I have, my reply is simple. I have five children - four to look after and five to love. He was a little boy that loved The Wiggles, loved playing air guitar, and loved collecting rocks. He lived in the moment and he didn’t complain however bad he felt.

 

Conor taught me many lessons and he still does. He taught me that life is now, sadness is okay and laughter is essential. Why can’t we speak about death?  Yes it’s sad, but it’s real. Perhaps if we normalise it we can accept it better.

 

Sally shared her experience of having a child die from cancer with the University of New South Wales Compass study (2012-2016). The results of this study informed the creation of By My Side, a support resource for bereaved parents.  

 

December 2016

 

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