Update - April 26th 2010

Well, we did it. Peter & Matt ran London Marathon 2010 for the Child Bereavement Charity.

Huge thanks to everyone who has contributed to the 'Running for Gus' fund, and for all the messages of support.

Special thanks must go to Michael Odell, who used his journalistic contacts to help get our story into The Times on the Saturday before race day. Thanks also to Fiona MacDonald-Smith of that newspaper for featuring Gus and the Child Bereavement Charity. The article generated some very kind messages of support and donations from people who prior to reading it had not heard of the CBC.

The fund has also been boosted by a donation of £3000 from The Spielman Charitable Trust. Christopher Moorsom of the Trust said  "We support young people and children in the South West, and we are delighted to support such a worthwhile cause."

So, unless you've already read it already in The Times. Here is our story. 

"On the afternoon after burying my son I went for a run. With the rain pouring down I ran across the Clifton Suspension Bridge, into Leigh Woods, down to the riverbank and then back up the side of the Avon Gorge via Nightingale Valley. Running up the valley is a challenge. It’s rough track, in places it’s very steep, and it just goes on and on and on. The only way to approach it is to attack. So I did. Ran at the gorge rather than up it. Ran at it with a rare fury.

Since that day in February 2006, I’ve run half marathons, cross country marathons, an ultra marathon across Dartmoor, even an 125 mile kayak marathon non stop from Devizes London. But I’ve never done any of them for charity. Never raised a penny to fund the hospitals which cared for Gus in his short life. Why not? Am I an ungrateful, uncaring monster? Maybe, but the simple answer is - I couldn’t.

I couldn’t raise money because fund raising involves facing up; going public; talking about the cause you are campaigning for. I couldn’t do that. Because I couldn’t talk about Gus. So I could go running, and I could think about him. In fact in many ways those races and the training I did for them were where I did my grieving. For away from them I had to be a supportive husband to Gabrielle, a strong father to Cecelia and then, later, to little Beatrice. But talk about the trauma of losing your son? No chance.

Now this was quite unhealthy – mentally that is, as pretty soon I was as physically fit as I’d ever been in my life.  So was my wife, Gabrielle, who had also embarked upon a rigorous exercise programme with a personal trainer. But Gabrielle wasn’t in as great shape mentally as she could have been either. As the warm, open woman that she is Gabrielle could talk about Gus. But who to? To family and friends obviously, but where were the trained therapists and counsellors who could help us begin to make sense of the trauma we had been through? Nowhere to be found. So I continued running, and Gabrielle kept crying and not sleeping, and life, which had seemed quite bad, got by degrees, a little bit worse.

Of course, we’d had a little bit of counselling during Gus’s short life, but that had mainly seemed to involve earnest individuals telling us that we were likely to get divorced because most marriages don’t survive trauma, or to try to put our grief in a box, and then put that box on a shelf. We didn’t find either piece of advice particularly helpful. Then of course, the worst happened. Gus, who had hypoplastic left heart syndrome, contracted MRSA in Birmingham Children’s Hospital. We got him home to Bristol for Christmas, but he never shook off the infection. He died on a February evening after emergency surgery. The surgeon and team battled for as long as they could, until, finally, we were led into a small, empty room and had the ‘nothing more we can do’ conversation. The tubes in his arm, and the one threaded down through his nose and into his stomach were gently removed and he was handed over to Gabrielle, being kept alive by a handheld respirator operated by a nurse. After a few minutes, we took the respirator away and Gus died. His body was taken away. We left the hospital and walked home. We were asked to come back the next day. When we did, we were asked if we would like to see his body. Given a leaflet on burial options. Asked if we wanted to have brass casts made of his hands or feet. Our dazed, traumatised answers were no and we left the hospital to do what it does best – caring and treating for the living.

His funeral was delayed for many weeks due, apparently, to the chronic shortage of paediatric pathologists and the consequent delay in the post mortem. We had sensitive and thoughtful meetings with the clinical team wherein we discussed his condition, the MRSA infection, and his death. What we didn’t have was any professional psychological support. So when I went running in the afternoon following his funeral, I can see now that whilst it might have made me feel better, I was in actual fact running away. Physically fit, Gabrielle and I were mentally ill.

How did we get from that state to where we are now? Where I can not only talk about Gus, but write about him here. Counselling. Therapy. From a trained, experienced professional. How did we get it? Pure chance. Through one of Gabrielle’s old work colleagues in London we were alerted to the Child Bereavement Charity, and in particular its Founder Patron Julia Samuel. Why hadn’t we heard about it before? Well it struggles for public profile, for media exposure, to raise funds. Julia will admit that the CBC is not as sexy as ‘Fashion Targets Breast Cancer’, or as headline grabbing as the ‘Make a Wish Foundation’. But who does the more important work? Should we, as a society, direct our charitable donations toward sending terminally ill children to Disneyland, or to funding the provision of dedicated bereavement counsellors at every major children’s hospital in the UK? You don’t get to meet Mickey Mouse with the CBC, but what you do get is prolonged psychological support for recently bereaved parents, brothers, sisters, grandparents and carers.  As Julia says “the terrible pain of the death can’t be prevented, but the surviving parents and children deserve, at the very least, appropriate well informed psychological support at such a difficult time.”

Bereaved parents, grandparents and siblings deserve better support than is currently available. But death isn’t sexy. Death isn’t sentimental. There’s no cure. Never will be. For Cancer Relief we can run in the ‘Race for Life’. What’s the CBC equivalent? The race for death?

We called Julia, and she invited us to see her at her house in Somerset. Over the course of a few months we saw her regularly. The sessions were emotionally and psychologically exhausting and painful. Far harder than running, or lifting weights. Step by step though, we were able to analyse and examine the trauma of Gus’s short life and death. What’s more, the truly amazing and wonderful thing about such a process is that once you’ve started on it, you begin to not only make sense of what happened, but you begin to grow as a person, to connect with the most fundamental, important aspects of your character and the relationships you have with those around you. It might sound absurd. It might sound amusing to those who think of me as a tough, cynical individual. But in dying, Gus has made me a better person. It took the work of Julia and the CBC to help me see that and feel good about it. In a recent e mail, Julia explained it to me:

“Loss that is processed and integrated psychologically, means that long term negative consequences can be prevented, and people even talk about feeling more alive, that it changes their perception of the meaning of life, valuing it more intensely. This has been termed ‘post-traumatic growth’.

 

Now we were very, very lucky. Julia saw us on her own time at home. The resources of the CBC are very limited. They do what they can and they want to do more.  I now do less running, and more thinking and feeling – I believe because I’ve had proper bereavement counselling and therapy.  Many others will not be so lucky. We need, as a society, to have a more honest and open attitude to death, particularly traumatic death, and the long term effects it has on people. The CBC talk about ‘breaking the silence’, about lifting the taboo on talking about death. Hopefully those of you who’ve made it this far will help to lift this taboo by sponsoring me.

Thanks for taking the time to visit my JustGiving page. Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer.