Kate Bull
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29 St Barnabas Road, Cambridge CB1 2BU Telephone 01223 321581
22nd May 1997
19th Dan Bulletin
Dear friends and relations
Dan died on May 11th, we buried him on May 16th, and now we’re facing up to what to do next.
(Two apologies: first, this bulletin is about Danny dying and his funeral, and will repeat what many of you know already. Second, I (David) am doing the first draft of this, rather than the usual ‘I’ (Kate)).
Dan gave up eating for the last 10 days or so before he died, although at one point amazed us all by suddenly tucking into a pile of smoked salmon sandwiches. He wasn’t in pain, and kept on being thirsty and drinking, but for the last three days he would ask for the bowl every hour or so and be sick. In between he fell into a half-sleep, so he might reply if something interesting came up but generally wanted to just lie next to someone and be left alone. Once he did some colouring, but was not interested in the outside world and the only distraction that he wanted was to watch old favourite videos. So we took it in turns to lie with him, stroking him and just being close. He never complained, although admitted he was sad after he said goodbye to his granddad. He was looking after us as much as the other way around, and kept his humour and dignity. As in in the last bulletin, it felt a great privilege to be with him, and increasingly we felt like excluding the outside world and keeping him to ourselves. Rosie and (little) Kate only went to school when they felt like it, and we were all hoping he would live until Paula, his previous nanny, arrived from Australia (in the event he died 12 hours before she could got here). We were quite calm, although certainly not stiff-upper-lip.
His morphine dose increased, and with the GP arranged a change in anti-emetic to try to get the vomiting under control. But by Sunday May 11th he was getting weaker, and spent much of the afternoon lying on my bed with his sister Kate. At 5.30 he started rambling a bit in his speech, and twitching in his movements, and Kate (big) and I sat holding him prepared for a sudden event. But, as Kate described at the funeral, there followed the most extraordinary two hours. First his eyes opened wide, and they stayed bright and focused for the next 90 minutes. But they weren’t focused on us – they saw right through us to the middle distance where clearly something very interesting was going on. He was bit twitchy, but did not seem distressed although his heart was beating fast. We talked reassuringly to him, although he did not show any response, and held him gently expecting that it would all soon be over. But after an hour or so we were frankly very curious as to what he was seeing! Eventually he became more agitated and we gave him some valium and hit the ‘panic’ button on the morphine infusion, and he became calm and very warm. Then, just as we thought we had got him stable, he had a great surge of energy and tried to sit up, and then soon after fell back into our arms, his heart got slower, his breathing sporadic, and then it all gently stopped.
Throughout all this Rosie and (little) Kate and some friends had been watching Star Wars downstairs, but now we each had our turn holding and crying with Dan. Rosie said “I’m finding it hard today” – we put her to bed expecting severe psychologicals, but she just declared it had been a difficult day, as she had cut her toe, hurt her finger, and then Danny had died. Then she went to sleep. All this time my 14-year-old Kate had been with Dan, and when it was time to lay him out, she took the lead in everything. She washed him, cut his nails, helped get him dressed in his Thunderbird suit, arrange his hair, and make him comfortable in the upstairs front room, surrounded by toys. It seemed a very natural and basic female response, but was very impressive to watch. It was a very peaceful and unforgettable time, and he looked beautiful.
The next day was very busy: we put a notice in the window saying that Danny could be visited, and soon after 11 the house started filling up and stayed that way for the next 8 hours. We had told the school the news the night before and their plan had swung into action, and all the classes were told simultaneously. Rosie’s class jointly produced a huge card for her, and many of Dan’s friends came to see him. It was very moving to see whole families standing or sitting quietly next to Danny, who was looking like a classical alabaster sculpture, only more beautiful. Some children made repeat visits, encouraged by (little) Kate who spent hours at Dan’s head, stroking and kissing him and talking to all the little ones. Downstairs cake was eaten, vast quantities of tea and tissues handed out, and a case of wine got through. At least 100 people visited us, and the flowers accumulated around Dan. Having Danny stay for a couple of days gave the house a remarkable atmosphere, peaceful and focused, very similar to when a newborn baby is brought back home.
It was an odd experience choosing a site for the burial, in a small and apparently full old cemetery with many missing headstones: the cemetery man, dressed in sepulchral clothes and with what appeared to be a frontal lobotomy scar, paced around with a hopelessly inadequate map, feeling with his feet where the ground seemed level. Eventually he decided they needed to stick rods into the ground to find a space, but sadly they didn’t have the rods with them so we couldn’t witness this bizarre exercise. One would have thought more modern technology was available, but it obviously worked as they found us a space where we wanted it.
Inspired by the wonderful Natural Death Handbook, I decided to make the coffin myself (in spite of a few comments on the lines of ‘is this wise?’). The timber merchant asked what I wanted the sheets of 1/2 inch blockboard for, so I told him, but he didn’t seem very taken aback. I won’t go into construction details (plans available if requested), but it was extremely satisfying and therapeutic to spend a sunny day outside making an amateur but functional coffin. I got lent just the right tools, and there was lots of help from friends and my men’s group. It was a real team effort. Then we handed it over to the ‘external’ decorating committee, who made it strikingly beautiful. Dan’s name was written by a calligrapher friend, then traced onto the top and adorned with gold leaf. When it began to rain the coffin was placed on the kitchen table and six children decorated the sides with stickers, drawings, quotes from Toy Story and Star Wars, and so on. Then the ‘internal’ decorating committee made a warm and inviting bed. It was strange coming downstairs in the morning to see it there.
Dan came back from the undertakers at 9.30 on the morning of the funeral, and my worst moment was when we took the lid off the temporary coffin and saw him. He still looked beautiful but very cold and rather – how else to describe it? – dead. It was helpful to put him inside his own coffin and add favourite toys, books, clothes, a loaf of bread baked by a friend, stickers, a video, and lots of letters and notes. We had deliberately planned to say our own goodbyes in the morning in the hope of being composed for the funeral, so we each had a quiet time alone with him where we could be very uncomposed. We screwed the lid down ourselves, which was not as bad as feared, especially after a small and very touching ceremony led by Kate’s Buddhist friend Danavira.
An astonishingly large crowd gathered outside the house for the funeral. A procession was led by Kate’s brother Stephen playing ‘Danny Boy’ on his violin, followed by the four bearers carrying the coffin, adorned with ribbons and five helium balloons. The street was very quiet, although we had to laugh when Stephen and Elaine on her harp unexpectedly launched into the Wallace and Gromit theme. At the ceremony a crowd of children sat on the floor in front of the coffin, pointing at the bits they had contributed. There were contributions from Danavira, Rosie, Dan’s nurse Amanda, Elaine playing the tune on the harp that she had played to Dan days before he died, his teacher Mrs Evans, Hephzibah, and finally his mum: all emphasising what a blessed boy he was, how he had been so dignified and considerate and fun, how his life was long enough, and how much love he had given and received. There were hymns and mantras, and many tears, and not a single reference to ‘tragedy’. There was applause when Kate described how he died, how he had not just faded away, but apparently ‘got up and went’.
Outside the children released the balloons, and then we took Dan to the cemetery. We were anxious how the small children present would deal with a real hole in the ground, but of course they just lay down, looked in, and started dropping leaves and sticks down. A final chanted blessing, then we lowered him in, threw in flowers and flags from the school, and then filled the whole grave ourselves, everyone taking it in turns with the shovels: Dan’s teenage cousins doing the most. At the reception after there were so many friends who had taken the trouble to come, and not enough time to give proper attention to everyone.
So where are we now? Friends lent us their cottage in Great Walsingham, and so Kate and I are having a few days each completely alone: no car, no phone, no agenda. It was the first peace I’ve had in around 20 years and it was perfect. I’ve gone to working 4 days a week, and Kate is on 3 days, so we both intend to have more time metabolise what has happened. It’s too early to tell how we are going to feel in the future.
Certainly we are left with a huge love and respect for the people around us. Dan for the way he died with dignity and with his wonderful character intact, Rosie for her unsinkability, (little) Kate for her care of Dan before and after his death, and everyone else who has looked after us so well and shared everything. The huge number of people who have cooked for us, talked to us, cried with us, prayed for us, laughed with us, sent flowers, lent us things, built, painted and lined the coffin, ironed my shirt, carried Dan to his grave, did the catering after the funeral, took the pictures and video, written to us, and so on. We cannot mention you all here but hope we remember to thank you individually.
Danny could not have gone away with more love and good wishes, and could hardly have given us more, and taught us more, if he had lived 100 years.
Love from David and Kate
PS As requested, overleaf is ‘Dan’s medical history’, recounted in part by Amanda at the funeral.