'When he was 11, he got a brain tumour. They said it was inoperable'
Tanya’s story | Held by God, even when full of rage
“When our second son was 15 months old, he started getting bruises. I should have known what it was. With my medical background, I probably did know, but I didn’t want to admit it. He went for tests and the doctor said that he had acute lymphoblastic leukaemia. I was in a state of shock. We had to go straight to the hospital. He was put on treatment – chemo in the hospital and then pills once we got home.”
“At first, it wasn’t too bad. He only had an infection once. But then he relapsed and we went back to the hospital. He needed a bone marrow transplant … and we were all in isolation for three months. It was very hard. Nobody else was allowed in or out. He developed graft-host disease and he was very grey. He lost so much weight. Eventually, we came home again and he kind of recovered.
“But then he came down with a brain disease. It was like encephalitis but it was never properly diagnosed. They couldn’t explain what it was or why it happened. By then, he had recovered from the leukaemia, but we had to face the effects of his intellectual disability. I think it was harder than the leukaemia. There was less support.
“We were living in Bondi and I remember one day, I went down to the local community health services clinic, and I posted my grievances all over the boarded up window. I was so angry. I think I was mostly angry at God but it came out in other places. I wasn’t coping at all.
“He was so difficult to manage – his behaviour and his repetitive questions. He even stole things from the shops. I would find out later and I’d feel terrible.
“Then, when he was 11, he got a brain tumour. They said it was inoperable. I was absolutely shattered. We took him home and he only had ten weeks to live. It was so hard to know how to tell him, or how to explain that he was dying, and that he would go to be with Jesus in heaven. I think he knew, though. One day, we were driving to vacation care and he saw a cross. He said, ‘What’s that?’ and I explained that Jesus died for us, on a cross, so that we could have life forever. Later, he told the doctor all about it.
“Afterwards, I struggled a lot. I was really angry with God. One time, I stood up in our church and I told everyone how angry I was. I wanted to ask God why he didn’t kill all of us. That’s how bad I felt. But the church people were really good. They listened to me and they accepted me and they helped me. About two years later, I went to a conference and the speaker shared about the parable of the prodigal son. It just blew me away. He said that in Middle Eastern culture, men don’t normally run. But the father in the parable ran to the son. ‘But while he was still a long way off, his father saw him and was filled with compassion for him: he ran to his son, threw his arms around him and kissed him.’ (Luke 15:20).
“That’s what God is like. He runs to us. That’s how much he loves us. Even in the middle of all my questions about suffering – and why it happened to us – I realised that God still loved me. I realised that I could be really angry at God, and yet I could still have a relationship with him. It was almost like I was beating on his chest, within the circle of his arms. I was still being held, even while I was so angry.
“It’s now been 25 years since Matt died. The grief has changed, but it’s still there. After 20 years, we decided to do a fundraiser for children’s cancer and we rode our bicycles 1600 kilometres, raising over $40,000. It helped me. And I’m always amazed by the words of Job, ‘I know that my redeemer lives, and that in the end he will stand on the earth. And after my skin has been destroyed, yet in my flesh I will see God.’ (Job 19:25).
“Job went through so much agony and yet he could say that. It shows me, again and again, that even within suffering, we can be held.”