My son was diagnosed with a brain tumour before his 1st birthday. There was no one else to talk to outside the family — it is not something a mother with a healthy child would understand. I kind of thought that everyone who would find out would think that I had failed as a mother. That’s exactly how I felt about myself.

“No one ever asked me how I was coping”

We decided to keep our son’s diagnosis private. Some people knew, of course, but most of the time they did not know what to say — so it was decided between Alexander’s dad and I that we should keep this to ourselves and pretend that we were a happy family.

In some way we did have a very busy and full life — we both worked, the boys went to good schools, played musical instruments, skated, performed, we travelled a lot and we met with friends. But underneath there was my fear, my loneliness, my despair, feeling that I am on my own in this battle for my son’s health. That it was my responsibility to make all the important decisions — about chemo and surgeries — that it was my fault that it happened to Alexander, that it was me who failed to protect my child.

At that time I was 26. I did not know if there was any help available. I did not know about charities and organisations which can support, help and generally make your family’s life a bit easier. We did everything ourselves.

The last eight months

The last 8 months of Alexander’s life we spent at the hospital. It was just awful. I did not know that he was not going to make it, and desperately thought — what else can I do to make him better. Fear, sleepless nights, arguments with doctors. We never had any support from anyone, and it would have made some difference.

When Alexander died I felt my life was over. I knew I had to carry on but I honestly did not know how. I had to function — work, meet people, chat — and I had to leave my job in the City to survive.

We needed all kinds of support. Legal — they told us that we had lost parental responsibility when Alexander turned 18. Psychological — they offered us a psychologist but she said that we cannot say anything bad to her, as she is under obligation to write down everything we say and report us if we say something wrong. None of us could work at that time and we did struggle financially.

Today — “I miss Alex”

Alex was a green-fingered boy. He won many competitions in Hampshire and was named ‘Person of the Year’ for growing plants and vegetables. A plant that was given to him for his last Christmas in 2014 has mysteriously just carried on growing for the last 9 years.

If not for my friends and family and the pupils I teach, I don’t know how I would have survived. Today, I have since started a charity that provides musical therapy for care homes and schools. My work involves singing and dancing because I work with children, vulnerable people and the elderly. I am surrounded by people all the time — but to be honest, really deep inside I still feel alone.

I feel no one really knows what to say to me — even my best friends who try to help — until I met Angela from the DLF. Finally, it feels like I’ve found that friend who really understands. Angela has given me the time and attention that I need, she sends me flowers and lovely gifts that make me feel cared for. Who doesn’t value being treated like a person and knowing someone else cares about you?

Most of all, it’s good to know that I do not need to pretend with her, and I can just be myself.

Things need to change

As bereaved parents, we have to be brave and strong in order to cope and rebuild our lives. Our other children are hurting and have to live with the grief of losing their siblings for the rest of their lives. There should be government-funded services — not charities — who work with families like ours, in order to provide a sustainable lifeline. Without this, charities like the DLF struggle, because they often have to balance work, family life, personal health issues, as they try to keep the charity running.

The Govt cannot reach everyone, but they can allocate funds and invest in services that reach these families at local and regional level.

I struggled to accept it and never talked about it — simply lied to my friends that everything was fine in my life. I could not believe that it was happening to my baby, to us.

Alex — forever loved and remembered. Olya is one of DLF’s Cherry Blossom Mums.