20 January 2017

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Julie Muir’s story

"It was so amazing to spend time like that as a family during the worst time of my life. Even our dog was able to visit!"

Alan, Craig and JulieJulie, 48 lives with her husband, Alan, 58 and children Kirsti, 22 and Callum, 19 in New Addington. Julie’s son, Craig, died aged 22 at St Christopher’s in March 2012.

“Craig did maths and statistics at the University of Kent, Canterbury, and was training to be a secondary school maths teacher. His own teacher said he would have made the subject trendy again! He’d loved maths since a young age when he used to watch Countdown with his grandad.

Craig loved life! He was a big Glasgow rangers fan (his dad is Scottish), very competitive (he even brought poker chips into school aged nine, on a day where everyone could bring their favourite toy!) and lived for music. He loved going to festivals like Glastonbury and Reading, and to comedy shows in London; he was always out doing something! He was also very mischievous- one time he went into his sister’s room and turned everything the wrong way- her books, mirror, everything! Another time, his German teacher at school asked his class to put an item that belonged to them on their desks and say what it was in German. Craig took his trousers off and put them on his desk!

When he was twenty, Craig had been diagnosed with melanoma in his eye. He’d had to have his eye removed but coped so well. Taking it out became his party trick to the point where at Glastonbury it fell in the mud and had to be cleaned with a wet wipe!  Two years later the melanoma had spread to his liver. When King’s College first mentioned palliative care I went into shock. It frightened me. I’d never been to a hospice before but Craig was adamant he didn’t want to die at home. He was thinking of us. He always did.  He’d even won the ‘most selfless person’ certificate at university! He didn’t complain, or ask ‘why me’- not to us anyway. Whatever he was thinking and feeling, he didn’t show it. He was so brave.

St Christopher’s was bright and welcoming when I had thought it would be dark and gloomy. The six days that Craig spent there were so bright and sunny. He arrived on the Friday and over the Saturday and Sunday had 80 people waiting in the garden to see him. He’d been in bed for days at King’s College and had barely eaten anything.  At St Christopher’s his spirits lifted and they made him food whenever he wanted.

I was able to stay with him the whole time. At hospital I hadn’t been able to visit until after 2pm- we’d be texting each other but depending on who was on duty I wouldn’t be allowed in. At the hospice, that stress was taken away.

I look back with such mixed feelings. It was so amazing to spend time like that as a family during the worst time of my life. We could do this privately, or go down to the Anniversary Centre. Even our dog was able to visit and one night Craig’s sister Kirsti stayed with us too. I have so many memories. That year ‘The Muppets Movie’ came out. Craig had wanted to go and see it in the cinema but hadn’t been well enough to, so we sat and watched the DVD together in the hospice.  Another memory at the hospice is when I took in towels for myself and Craig and he asked me if I minded if he used the hospice towels because they were softer than mine!

It was also my birthday whilst Craig was there. Alan brought in some bubbly and Ayesha, a nurse on Rugby Ward, gave us real glasses. Another time, they gave Craig and I massages. They didn’t have to do these things; they were just so nice.  He had always enjoyed a coffee in the morning but hadn’t been drinking much since being unwell. On my birthday he had a big mug of coffee, saying ‘this is for you mum’. The rest of the family came to visit later in the day and we all had pizza; Craig had the biggest slice.

After Craig died we all benefitted from bereavement care at St Christopher’s. Kirsti and Callum went to group sessions at the hospice specifically for young people who were bereaved. They preferred this to private counselling as they got to do group activities and it was a space for everyone to share their stories.

Alan and I also went to some counselling sessions. It was really helpful for us to talk, especially in the early days. We were sometimes on different paths of grieving and if I was having a bad day I wouldn’t want to bring Alan down and vice versa. The sessions really helped us to work through our grief together.

After Craig died, we went back to the hospice and one of the nurses said to me “you looked after Craig so beautifully.” I really needed to hear that, as a mother you want to protect your children, and there was nothing I could do to help Craig, I felt hopeless, her words gave me such comfort, I will never forget that. I also wrote some poems very soon after losing Craig, it helped me cope with all the emotions and feelings in my head.

We were sinking into a spiral and Alan in particular was struggling. I told him he needed to do something; I’d already done a race for life and it had made me feel better. That’s when he started ‘Craig’s Day’ which has been going for five years now. It’s a big football tournament with 16 teams. Craig had so many friends and they all come back for the day every year. We contacted all of Craig’s favourite bands and comedians and had so many signed goods and tickets donated. We have an auction every year, and Iceland, where Craig used to work, donate £100 to us to so we can buy meat for the barbecue. Last year, we even had Sandra from Gogglebox come along! Before each tournament we always have a minute of applause to remember Craig. The first year, as this was happening, my friend took a photo of the sky and clouds had formed a huge C! Over the years we’ve also taken part in the Midnight Walk, the Bluebell Walk and I’ve done a skydive and a 10k run. This year we’re hoping the total amount of money we’ve raised for St Christopher’s hits the 40k mark!

Craig’s friends planted a tree for him on campus at the University of Kent, along with a plaque a plaque in his memory. It overlooks the cathedral and is a lovely place to visit.

We miss him so much. He’s a real credit to us and he’s the one that’s given us the strength to carry on- we couldn’t let him down.”

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