I loved my job as a primary school teacher and I desperately wanted children. Being a mum and having a family was everything to me.
Tom was born first – he is now a 24-year-old actor – and he was 14 months old when James came along.
But James was born with a rare chromosomal disorder, which created complicated special needs and health problems.
He was allergic to virtually everything, and he had dual sensory loss, learning disabilities and autism.
I gave up my job to care for him. I wanted to help him achieve everything he was capable of.
It was challenging at times – I would set alarms to give him medication every two hours, apply wet-wrap bandages over his whole body for the first two years and be ready for allergic reactions.
My husband Steve and I faced serious situations so many times: in 2012 he had a stomach bleed, and had life-threatening surgery, but James bounced back, so while we worried, we never expected anything else.
I was told when he was a baby that James would never accomplish anything. But I decided differently. He was the first child in his school to get a communication aid after I saw Stephen Hawking using one, and, at seven, James had an operation that enabled him to walk for the first time.
He did things that were incredible and we were so proud. Everything he did was a miracle.
In early 2014, when he was 19, James was accepted into Star College, Cheltenham, a residential place where he’d learn to live independently as an adult.
It was a huge achievement given there was so little hope for him when he’d been born. James’ disabilities had never stopped us doing what we wanted to do as a family.
James couldn’t fly but we went to Disneyland Paris seven times on the Eurostar, and we also visited the top of Snowdon – Steve and Tom climbed and James and I went up on the train.
Looking after James was a full-time job, so when, in September 2014, I was diagnosed with breast cancer, I put myself on the back burner as always.
I waited a few weeks and delayed my treatment – only by four weeks – to make sure there was a care package in place for James.
I wasn’t concerned about me, just him. I chose a double mastectomy, because the cancer I had was likely to recur in the other breast, and I didn’t want any care for James to be compromised if it did.
After surgery I had chemotherapy, but I remained positive, as with James’ illnesses my focus was on getting well and getting us all back to normality.
It was hard because Steve was working as an accountant while caring for us all.
But everybody helped, especially Tom.
When my hair started falling out due to the chemo, Steve shaved my head, which James found hilarious. He looked on, belly laughing.
Humour was our coping mechanism and our home was always filled with laughter. We were lucky. We had a nice home and a happy family, but we weren’t materialistic.
We’d learned early on that the most important thing in life was each other.
My treatment was going well and we decided 2015 was going to be a good year. Our goal was to get to April when the invasive treatment was over, and buy a hot tub for the garden to celebrate.
But in February, James became ill.
He had an infection from which he recovered, but a week later he became unwell again and was admitted to hospital.
He developed sepsis, but despite two operations in one day, it resulted in organ failure and he died.
It destroyed me. I had cared for James 24 hours a day, seven days a week for 22 years. He had no verbal communication, so I was his eyes and his ears, his advocate.
He was my job, my best friend, he was part of me… He was my life.
And when he died, I couldn’t cope.
The medics insisted on continuing my chemotherapy, so I delayed the funeral so I could get over the treatment to say goodbye properly.
At my next chemo session, I clung onto James’ cuddly toy and wouldn’t let go.
I managed to hold it together for the funeral, even reading a letter telling James how much he was loved and how privileged we were to have been his family.
But after that I knew I wasn’t coping. I’d write to James every day, setting down my feelings, my memories, because I was frightened of forgetting.
I locked myself away because it was easier than seeing other people who still had their family.
I needed to go on for Steve and Tom, but it felt like I was no use to them any more, because such a big part of me was missing. I was referred to a psychiatrist who gradually helped me find a way forward.
But I sought refuge in food. I’d always yo-yo’d, but after James’ death I ballooned to a size 18-20.
Although I recovered from breast cancer I’d never felt so low, and I went from 11st to 14½st. I was bald, flat-chested and obese.
TRYING TO MOVE ON
The psychiatrist helped me take little steps towards recovery. And when I went interrailing in June 2017 with Steve to celebrate my 50th birthday, stopping in Venice, a gondolier took our photo.
I was horrified. I looked as awful as I felt – but it was what I needed to take back control. I had to lose weight and joined a Slimming World group. By November 2017 I’d lost 3½ stone.
I maintained that loss and underwent a DIEP flap breast reconstruction in January 2018, where my stomach tissue was transplanted to create new breasts.
Once I’d recovered from that I lost another stone, taking me to 9st 13lb.
I have learned to enjoy exercise and I feel so energised. It keeps my body healthy, and it’s also great for my mental health.
I have too much life left to throw it away and I owe it to my family, and James, to live the life I’m privileged to have. I believe James is around me and laughing with me, so I’m rebuilding my future and taking him forward with me.
I think about James every day, but life is short.
I appreciate every day for what it is. I’ve had a brush with death and been given a second chance – James hasn’t.
I have to make every moment matter.
For me and for him.
Losing weight gave me a lifeline
Slimming World became part of Julia’s therapy to reclaim her life. It transformed her way of eating and gave her back some control.
‘Before, I’d start the day well with Bran Flakes or Special K, but by mid-morning it was time for coffee and chocolate biscuits or a chunk of cake – I bought lots of cakes and I’d have several slices a day. I bought tubs of chocolates, which I ate in no time, then for lunch I’d have a toastie loaded with cheese, then nuts and crisps and yet more chocolate.
‘Tea would be fish and chips, or pizza, and I’d often eat late into the night. Now, breakfast is mixed fruit and fat-free natural yoghurt, lunch is salmon with jacket potato and green vegetables, and dinner is now a healthy roasted vegetables and tomato pasta. However, at weekends I still treat myself to a huge cooked breakfast.’ Slimmingworld.co.uk
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