Amanda Brooke on the death of her three-year-old son

A faint blue line on a pregnancy test doesn’t immediately qualify you as a mother, but as I stared at the plastic stick trembling in my hand I thought I was ready. There was so much I wanted to teach my unborn daughter and so much love I wanted to give – I couldn’t wait to meet her.

But amid the thrill and excitement came an overwhelming sense of responsibility. I realised there wasn’t going to be a day in my life when I wouldn’t worry about her, and she wasn’t even born yet. Would the pregnancy go full-term? Would my baby be healthy? And how would I keep her safe for the rest of her life?

I had surrendered my peace of mind for a tiny heart that had the potential to break my own, but when Jess was born, pink and perfect, my heart swelled with love and I knew she was worth all the sleepless nights to come. Seven years later, in 2003, I was ready to risk it all again when my son Nathan was born.

My little family was by no means perfect. I was a single mum by the time he arrived, supporting us all by working as a manager for a local authority, but I gave my children the love and stability they needed, and in return received a sense of fulfilment that was like no other. My anxieties persisted but I looked to a future surrounded by grandchildren, secure in the knowledge that, no matter what, Jess and Nathan would always have each other. I never doubted it.

Then I noticed a couple of marks on my baby’s tummy that didn’t go away. Concerned, I took Nathan to my GP and he was referred to a dermatologist who diagnosed a rare skin condition. I was told not to worry, the marks were benign tumours that would fade in time. But of course I worried, especially when a search on the internet uncovered a tenuous link with a rare form of leukaemia. I tried to tell myself I was being paranoid, but six months later Nathan caught a serious stomach bug and we ended up in A&E at Alder Hey Children’s Hospital, where I shared my fears with the doctor. Routine blood tests were ordered, probably just to put my mind at rest, and an hour later there was an oncologist waiting with the results.

Nathan’s leukaemia was ‘indolent’, or slow-growing: it was there but hadn’t yet progressed to a stage where it affected his health – and in spite of his bug, he looked perfectly healthy. It was hard to believe there was a time bomb ticking inside my little boy, harder still to be sent home to watch and wait for things to get worse. The doctors wanted to give Nathan a chance to grow before subjecting him to a bone marrow transplant. It was the only way to save his life, but the procedure would involve shutting down his immune system and came with its own risks and no guarantee of success.

To an outsider, it wasn’t immediately obvious in those early days how gravely ill Nathan was

Not yet two, my son was too young to understand what was happening but Jess knew something was wrong. I told her only what I thought she could handle and was surprised by how much that was. She grew up fast during that two-year wait for Nathan’s cancer to become active and force us into action. While her friends were dealing with the disappointment of discovering Father Christmas wasn’t real, she was coming to terms with a different kind of reality, where children could get cancer.

To an outsider, it wasn’t immediately obvious in those early days how gravely ill Nathan was. He was a typical boy who loved Thomas the Tank Engine, Buzz Lightyear and annoying his big sister. Like Jess, he was a fussy eater so I devised a sticker chart to encourage him to try new things, but it became a losing battle. He developed an enlarged spleen, a side effect of the leukaemia, and it pressed against his stomach making him feel full constantly. By the time he was supposed to start nursery, he was in hospital having his spleen removed.

Every day with Nathan was precious and I found happiness in simple pleasures like holding both my children in my arms. I was forever taking photos of them, aware that our time together could be limited. I seemed to have a camera permanently in my hand, and it was only when Nathan started saying ‘cheese!’ every time he looked at me that I realised what my children really needed was a sense of normality. Ours was a new kind of normal, however, with a dark shadow hanging over us, and I wasn’t the only one to see it. One evening while I was driving them home, Jess asked the question I had been dreading. Was Nathan going to die? In all my imaginings, I had never thought motherhood would get this tough.

My daughter wanted honesty so I told her that Nathan’s cancer was waking up and that there was more chance of losing him than keeping him. The doctors would do all they could, but if the worst did happen, they would make sure he wasn’t in pain. I must have said the right thing because she started gabbing on about something else entirely while Nathan sat in the back of the car singing, ‘Row, row, row your boat, gently down the stream’. It was as if there was a snarling monster sitting right next to us in the car and I had somehow managed to convince my children that they would come to no harm. Did that make me a good mother? I didn’t think so because, in the end, I couldn’t protect them from that monster, and Nathan did suffer.

My son put complete trust in me and the staff at Alder Hey and never objected to being prodded and poked. Our consultant described the intensive chemotherapy Nathan received immediately prior to the bone marrow transplant as heroic measures (he would die without it but it could also kill him), and my son was most certainly the hero. Meanwhile, I became a bystander, unable to do anything except offer comfort as Nathan’s condition deteriorated following complications after the transplant. There is nothing on this earth that prepares a mother for telling her three-year-old son that he has suffered enough and it was OK to let go, or an hour later holding her distraught 11-year-old daughter after telling her that her brother has died.

Some might say it took courage, but as far as I was concerned I had failed in the worst possible way. I had lied to Nathan when I said it was OK to go, because it wasn’t. How could it be? He was three years old and he wasn’t supposed to die. I wasn’t supposed to let that happen. My grief was a physical pain matched only by my guilt and my greatest fear was that, wherever he was, Nathan still needed me and I couldn’t reach him.

To my shame, I gave little thought to my daughter’s grief. After years of sharing so much with Jess, I became a closed book. I couldn’t tell her the thoughts that plagued me so I hid my tears and pretended I was as strong as she needed me to be.

I began to write, wanting to capture every precious memory before time stole the finer details of my beautiful, brave boy who had once – when asked by an elderly lady what his name was – replied, ‘Sexy’. And while I was opening up my heart to crisp white pages, my daughter was left floundering. I didn’t realise my mistake until one evening when Jess sat down next to me and wanted to talk about Nathan. For the first time since his death, we did. Rather than upsetting her, the sight of my heart breaking gave her comfort and I can still see her skipping away while I was left sobbing and utterly confused.

I realised I was allowing the devastation of Nathan’s death to become his legacy and I couldn’t let that happen, for either of my children’s sakes – they deserved better from me. Discovering there was still something to fight for, I started to take back control of my life. There were some things that I couldn’t change but others I could. I was overweight and had always taken my health for granted, which seemed wrong given that Nathan had to fight for every day on this earth. And what would happen if I became ill? How would Jess survive losing her mum as well as her brother? A part of me longed to be with Nathan but it was Jess who gave me a reason to live.

I lost weight and, four years after Nathan died, I ran the London Marathon. Running improved my mental health but I still hadn’t worked out how to help Jess. I didn’t understand why she kept pushing me to talk about Nathan until I wept, so I turned to The Alder Centre, which offers bereavement services at Alder Hey. The counsellors there helped me understand that Jess wanted reassurance that I was feeling as bad as she was, and that it was normal. I learned that, when Jess came to me with her problems, most times being heard was all she needed, and that I must fight the urge to take over and fix everything for her.

Grateful for the support we received, I became a volunteer at The Alder Centre and worked for some years on the Child Death Helpline where I put my listening skills to good use. I gave up that role when the centre relocated, but I still wanted to help other bereaved parents, because helping them helped me. I’m now a befriender and a member of the steering group involved in the design and build of a new, purpose-built Alder Centre, which is due to open next year.

Writing helped me, too, and I progressed from documenting my own story to creating fictional characters who could provide a conduit for my experiences of motherhood. Before Nathan, I didn’t have any great ambitions to become a writer but he made me realise that life’s too short not to have a dream. I was pinching myself when I signed my first book deal and almost ten years to the day after his death, I gave up the day job to become a full-time writer. I couldn’t have done it without Nathan and whenever I give author talks I credit him for steering my life in a new direction.

My relationship with Jess was going from strength to strength. After everything we had been through, we could talk about anything, and often did. Ours wasn’t a typical mother-daughter relationship and Jess accepted without complaint that I needed to know where she was all the time, not because I didn’t trust her but simply because I wanted to know she was still alive. We had both learnt the hard way that a parent’s worst nightmare can become a reality.

I was beginning to think we were through the worst of it – we deserved a break after all – but then Jess’s teenage hormones really kicked in. It can be a minefield for any young adult, but for Jess it was overwhelming. She didn’t tell me about the panic attacks until they reached crisis point during her first year in sixth form. It would appear that I hadn’t only taught my daughter how to grieve, but how to worry. I wanted to take her pain away, but like Nathan’s illness, this wasn’t my battle to fight. I could help from the sidelines but it was Jess who had to work through her own solutions. And she did.

Amanda with Nathan and Jess in 2006. Amanda writes: ‘I realised I was allowing the devastation of Nathan’s death to become his legacy and I couldn’t let that happen’

Determined not to give in to her anxiety, Jess stuck to her dream of going to university. She was worried about leaving me, but we both know we owe it to Nathan to make each day count, and when she was offered a place at Lincoln University I was beyond proud. I knew she was going to get so much more from the experience than simply a degree in psychology. She’s in her final year now and has grown into a remarkable young woman with a generous heart and a strong will.

Jess wrote me a letter recently – a proper handwritten letter that ran to three pages. It was the eleventh anniversary of Nathan’s death and she wanted me to know how proud she was of me, and that Nathan would be, too. She gave me credit for making her the person she is today, but I’m not sure I would agree. I set out on this journey hoping I would teach my children well, but they have taught me so much more – I’ve learnt that joy and happiness can be found in the darkest of circumstances and despite what we went through, I wouldn’t have missed being Nathan’s mum for anything. 

I don’t think I’ll ever be completely happy without him, but I’m thankful for what I have and I’m willing to settle for being incompletely happy. I have Jess, and although it’s been hard, as a parent, to show her my vulnerabilities, we’ve learnt to share our feelings and I think we’ll be OK. I’m not the person I would have been without them and I’m truly blessed to be the mother of two extraordinary children.

Amanda’s latest novel, The Bad Mother, is published in paperback by HarperCollins, price £7.99. To order a copy for £6.39 until 18 March, visit you-bookshop.co.uk or call 0844 571 0640; p&p is free on orders over £15