Time after time

Time moves inexorably on.

You want to freeze time. Stop it so it doesn't take us further away from the boy. Keep us close to him. But you can't. You only have memories to rely on. No more adding to them.

Ring of Fire

Went and saw the crematoria. Sorted the funeral.

We went to see the two crematoria in our area. One was scruffy and a bit hopeless, though the brochure made it look very nice. The other was better maintained and we found a nice tree as a site for the ashes. Putting him among flowers didn't seem right as we never had flowers in the house because of the infection risk from the water the flowers would be in. I was pretty useless as we went round, too upset to engage. Left it all to the wife.

We let the funeral directors know and the funeral is fixed for next Friday (12 October). Also, went and signed all the forms for the funeral and cremation. Auntie has kindly offered to do refreshments afterwards. Next job is sorting the service and flowers and sending invites.

Went to auntie's house later. So sad not to have the boy seeing auntie's pandas and giving them a kiss. Made more difficult by looking through auntie's photos of the boy, even though we wanted to see them. Brings home how happy he was but also what a short timespan they covered. Just reinforces the sense of a life cut short and the unfairness of it all. How stoical he was. Pictures of him after his operation, big bandage on his head and tubes connected but still playing with her and the pandas. And smiling.

Further down the road

I wasn't going to write anymore but it might help to make sense of all the shifting emotions, so I will keep going until the funeral.

SUNDAY

Sunday was a strange day. The wife and I stayed with the boy, talking to him and stroking his hair and hand. We had always been with him in life and couldn't find it in ourselves to leave him in death. We waited until dawn, and then one of us stayed with him while the other made the news available to those who needed to know, starting with the doctor.

Even though she wasn't working at the weekend, our GP very kindly came round to do the grisly ritual of checking he was really dead. She was in tears as the got out her stethascope and checked his pulse. He was so cold by then it was just bizarre to watch.

She didn't have the right certificate with her, so the boy couldn't go anywhere. We weren't ready to let him go, so weren't too bothered. The wife was in overdrive and spent most of the day talking and crying on the phone, pacing endlessly round the house. That meant I was able to have quiet time with the boy. I tried to reconcile that his passing for the best, given where he had got to, with the lovely happy boy we had lost and with whom we had such little time.

In the evening one of his night nurses came round with some food. I helped her get it from the car. There was a lot of it. How many people do you have she said. Errr... just me and the wife I said. She was appalled that family and friends weren't with us. Being Sri Lankan she saw this as hugely improper. People should be with you for 48hrs. We Westerners do death differently I mumbled. It's not like people haven't been round. Later, she was kind enough to sit with the boy while the wife and I ate for the first time in 24 hours.

We couldn't work out what to do for the night. We couldn't go to our bed and leave him alone. After a confused discussion, we decided to stay with him. We dragged the matress into his room. It was very cold there, no central heating and the window wide open. I wasn't sure I could sleep in his room but after forty hours without sleep I eventually succumbed. It felt like our last time as a family together.

MONDAY

Inevitably, I woke up on Monday at my normal time to take over from the nurse. But it wasn't necessary anymore.

There were more visitors and I stayed with the boy while the wife dealt with them. After being numbed into calmness on Sunday, the realisation that it was all over and everything our life had been built around was gone sunk in. It was more than I could bear. I told him that we loved him. That I didn't know what we were going to do. And that I was sorry we had failed to keep him safe. But we had tried our best.

The wife and I agreed that we couldn't keep the boy endlessly. And it was meaning we spent no time together. So I rang the funeral directors to tell them to take him late afternoon. This fixed deadline gave an end point for the wife and she finally stopped rushing round and spent some time with the boy.

And I dealt with my mother. Grief is a funny thing and unpredictable in what it makes people do. As for my mother she will obsess about a minor thing rather than focus on the big thing. She was very thrown by realising that the boy was in the house. She had expected us to have got rid of him that morning. Instead of dealing with it she complained that she was supposed to be on holiday next week. And if the funeral were next week, this was the third holiday she'd had to cancel. I didn't pursue it but assumed that there were other holidays that she'd cancelled over the last couple of years when the boys health had been uncertain. Turned out that the first was thirty (yes, thirty) years ago when she'd come back early because my grandmother had died. And the other was five years ago when my father had a heart attack the week before their holiday. She asked if I would think it bad if she didn't come to the funeral as it was her last chance to have a holiday in good weather this year. I didn't really think she wouldn't come but said it was for her to decide but I wasn't arranging the funeral around her.

I had a few minutes with the boy before the ambulance arrived to take him away. Not long enough. They asked if we were sure we were ready. I choked out that we were, whilst wanting to say, no you can't have him. They took him in a Moses basket along with little panda. The wife and I stood pathetically at the doorstep watching it go off down the road and then turned to face our first night without him.

TUESDAY

It's not the toys everywhere that get you it's the little things that catch you off your guard. Like noticing that there's a bowl of beaten egg in the fridge ready for cooking he will never do. Like noticing a book on a high shelf we had never given him. Andf then there's the practical arrangements.

Went to the registrars to register the death. On the way remembered making a similar journey to register his birth. It seems so recent, because it was. On arrival the receptionist asks for the deceased's name, my name and my relationship to the deceased. I give the names and on the latter question say "father". She writes son. I say "no. I was his father". Not the usual or right thing to have to register.

In the afternoon we go to arrange the funeral. Discussions of flowers, service, limos, coffins and urns for ashes. The little children's ashes boxes are too horrible to contemplate. We can't decide on which of the two crematoria to use, so will have a look tomorrow.

At bed time, the wife comments on how calm she is and how wrong that feels. Moments later I find her in tears coming from the boy's room having said her normal goodnight words to the absent boy. I know that it will get better but right now it is so, so hard and we miss him so much.

Baby, 1 4o7e 1ou

It is so, so quiet in the house. No machines humming and whirring. Not needed any more. The boy died at 2.13am BST. He was peaceful in his own bed, Mama and Dada with him. The struggle is over. He isn't suffering any more.

These last few days have not been kind to him. This cruel disease had robbed him of all the things that he could do. All the advances he had made over the spring and summer taken away one by one. He still wanted to say goodbye to visitors, demanding to be carried to the door, even when he could barely manage a wave. But he was caught between what the tumour was doing to his body and what the medicines were doing him. There was nowhere left to go. He was a spectator on his own life, watching others do things for him that he used to do himself.

In the evening, he started to require increasing amounts of oxygen and his breathing not only decreasing in rate but also intensity. The wife got in bed with him to encourage him to breathe and massage his chest. She talked to him about needing to breathe in order to help auntie run a race. For a while it worked but after a few hours even this and more and more oxygen was not helping. So, we decided to turn to monitor and the pumps off and to stop urging him to breathe. I held his hand and the wife discussed things he liked. She went through two of his favourite recipes, the ingredients, preparation and cooling times. At the very end of the second recipe he was gone.

After a while, I dressed him in his favourite clothes and made him look presentable. Little panda with him, he looked for all the world as if he was asleep about to wake from a nap. In my sleep deprived state I kept having the illusion that could see his chest rise and fall a bit. But it isn't.

We are trying not to remember him as he was in the last few weeks but earlier. The ever-cheerful, inquisitive, sociable little boy who was full of cuddles. When the wife accused him of beastliness he always said "No. I'm a nice boy". He was right. He was a lovely, happy boy and he leaves a massive hole in our lives. We will miss you little boy.

Four to the floor

Spent a lot of the day by the boy's bed. He settled in the early morning and hasn't woken all day.

The wife and I have taken turns to sit by his bed, watch over him and give medicines as required. He hasn't woken all day. We have no idea if he can. We will leave that until tomorrow. His breathing rate has declined a bit more - down to 4 per minute by early evening. But his colour was good and he seemed settled. Not in any pain. We stroke his hand and talk to him, reminding him to breathe. Auntie came over briefly as did auntie m and Oma.

For now the wife and I are calm, just making sure he is ok and not in pain. There's nothing else we can do right now bit be with him. As we go onto the night things look parlerous as his oxygen needs rise and breathing rate slips again.

Second guessing

The boy's sleeping is increasingly erratic and his waking hours less active. And then he went blue.

The boy has had an odd sleeping pattern for the past few nights where he sleeps for five hours, is awake for six and then sleeps for a further five. Means foreshortened days. Today was a more limited day than previously. He was awake for only three hours doing a bit of cooking with his home school before falling asleep for a couple of hours in front of the TV.

We woke him for his bath. He was in the bath when the night nurse arrived. I was letting her in when the wife called. His fingers and lips had gone blue. I yanked him out of the bath and we got him connected to an oxygen cylinder while I dried him off. He still didn't look good, so once dried we got him in bed and on high flow oxygen. He still wasn't looking good, still blue at the extermities, so we called an ambulance. We realised that the problem was that he wasn't breathing regularly enough. When I rubbed his chest and told him to breath he eventually did and the colour returned.

The ambulance crew came. But we soon established that there was nothing they could do other than take him to hospital. We said no (we have hospital agreement to that, so they didn't insist). We rang symptom care but there was nothing they could suggest except medicine to pacify him as it was the tumour effect that was slowing his breathing. He was breathing so slowly (only 6-7 per minute) that the wife and I were fighting back tears and saying we loved him. We both thought we were going to lose him there and then. We called auntie round to give him a kiss and one of her pandas stayed with him when she went.

After an agonising hour or so things sort of stabilised. His breathing was slow but he didn't need excessive amounts of oxygen to keep him stable. We gave him more morphine as his arm was waving a bit. The nurse encouraged us to eat. We did unwillingly but went back to him later. He was stable but in a half waking half sleep state. We stroked his hair and tried to ensure he was comfortable. We got a couple of restless hours sleep.

I'm so afraid of what tomorrow brings.

Miss you nights

I miss the boy running unsteadily to the door when I come home.

I miss him pulling out the wash basket for my work clothes.

I miss a hug.

I miss his lop-sided smile.

I miss the chatter.

Most of all, I miss him saying "Dada".

But there are still flashes of him coming out, like when he shakes his head when I say it's time for bath and when he wags an accusing finger at Mummy when she gets ready to have a bath with him.