Final Straw (Move On Mix)

This blog and the earlier blog record a year of being a parent of a child with cancer. It started as a way for me to try to make sense of the fears for the major brain operations that were the boy's best chance of a longer life. It followed the operations, chemotherapy and the highs and lows of everyday life when your child has cancer. In the end, despite everything, they were ultimately unsuccessful and so this blog ends with the boy's death and funeral. We will have to find a way of carrying on without him.

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It's now time for the boy and little panda to wave goodbye and go and hide.

Last Tribute

Address from the boy's funeral:

The boy was born in December 2003. He died on 30 September 2007. He had a brain tumour which eventually got the better of him. In that time he had three lots of neurosurgery. He had three rounds of chemotherapy lasting a total of eleven months. He had six weeks of radiotherapy. He spent almost a year of his life in one of three hospitals. He had a trachaeostomy, a gastrostomy and a central line. But to think of the boy in terms of his tumour, his medical needs or a tragicly short life is to miss the point.

The boy never saw himself as defined by his illness. If you asked him he would say he'd had a great life. He saw life as a game and an adventure with new experiences to enjoy. One in which Mummy and Daddy were always with him. No mother could have done more to make him feel loved and special and in turn he loved Mama. Hospital was not something to be feared but an adventure to be enjoyed. A home from home holiday camp. There were ambulances to be found and touched. There were doctors and nurses to be waved at and hugged.

And there were those who would take him to hospital in their red or blue cars to meet. Hospice people who would come and play. Carers to come during the day. And after his bath, waiting on the top of the stairs for the night nurses. He always wanted to help them wash their hands and play night time games. At home there were the neighbours to wave at or the special thrill of playing over the fence. There were always a whole range of new people to meet who would make him feel special.

He loved nurses, ambulances, buses, pigeons, trains and pandas. The boy also had his own interests. He loved to cook and paint.

He couldn't eat. But this never bothered him. His great pleasure was to cook. Cooking inspired him as a creative pleasure. He could spend hours making recipe after recipe. Pretend cooking was always a poor substitute for the real thing.

As for painting, he loved colours to be mixed before he could start. Each colour had its rightful place on his palette. And he had a favourite colour - yellow. His painting was precise and delicate. And he always wanted to show me what he had done when I came home from work.

But he also loved pandas. He had his own pandas - baby panda and little panda. Little panda always came with him to hospital and had his own central line. Lawrence loved to play nurse and get everything ready to change little panda's dressing and bung. He knew everything that was required to prepare and how a dressing change should be done. He had paid attention when the community nurses did it. He had a good bedside manner and made sure little panda wasn't scared when it was happening, saying "good boy. Good boy" to reassure him. Little panda is with him now.

And of course there were auntie's pandas - big panda and chi chi, his favourite. No trip to auntie was complete without each panda being carefully kissed on both cheeks when it was time to leave.

He was a boy who circumstance had made mature beyond his years. He didn't waste time feeling sorry for himself. He was a beautiful boy, with a warm smile and an ever-positive cheery nature. He didn't see himself as brave, he just just got on with his life.

The boy didn't discriminate. He was sociable. He wanted to be your friend. Friends, family and medical staff were all the same to him. It was whether they would engage with him that was important. Whether they would take time to play. The boy was very inclusive. Always asking visitors if they wanted tea or coffee. And then toddling off to make it. If one person got a hug everyone got a hug.

He would always ask us "what's next?". I don't know what's next for him but I hope he's still having fun and giving pleasure to others with his zest for life and his generous spirit. He will now probably be on a train with all the pandas. Or he will be mixing colours in his palette to paint rainbows in the sky.

His warmth and generosity left a deep impression on people's hearts. We had such a short time with him and we deeply deeply wish he were with us now. But he isn't. So we will have to rely on those precious memories he has left with us and with others.

Finally, saying goodbye was very important to the boy. No-one could leave his hospital cubicle or leave the house without him waving them off. He got very cross if he didn't get to say goodbye. He can't say goodbye to you now but I am sure he would want us to say thank you for coming, to wave you goodbye and as he would say don't worry. Don't be sad.

Cakewalking

Getting ready for the funeral tomorrow. Like preparing for a party you don't want to go to but is important goes well.

Did cooking for the party. Four of the boy's favourite recipes. Seemed a good idea a few days ago. But was much harder than I imagined. Doing them without him was painful and a reminder that a recipe was the last thing we said to him before he died.

I went to see the boy at the chapel of rest. Sat with him for a while and said my goodbyes. No epiphany but have to accept that he is not here, that is not him and this really is the end.

More than a feeling

The grief cycle: Shock, Denial, Anger And Guilt, Despair And Depression and Acceptance.

I know in my head he's dead. I was there when it happened. I felt him cold. I was there when the doctor certified him. I was there when the undertakers came to take him. But in my heart I can't believe it. We spent so long working to avoid it, nursing him through one chest infection after the other, through one course of treatment after the other. He can't really be gone. We can't really have failed. He must be here somewhere.

It is like waves on the shore. The realisation crashes in on you, then there is a period of numbed calm whilst the next wave draws itself up before breaking over you.

Letting go

Have to start letting go.

Occupational therapy came over to collect the equipment he had been using in the last month or so. Harder was the Community Nurses coming to take away all the medical equipment, consumable medical supplies and the medicines that littered our spare room. Saw the spare bed for the first time in over two years. Looks so empty now. The wife found it especially hard. She had been responsible for ensuring that we had a months supply of everything. Two car loads of stuff. But they kindly left the bed - the hardest thing to let go.

The wife and I can stay up late, get up late, go for walks, have coffee whenever we want, comtemplate nights out and holidays. But we'd swap it all in an instant to have the boy back. But we can't.

Gone

In a couple of hours it will be a week later. Seems both a blink of an eye and an eternity since he died. Time seems suspended somehow. Or perhaps it's that I just don't care about what is happening around me now. Nothing meaningful to fill the time anymore so it dribbles by and sleep doesn't come easily so the days last longer.

Daydreaming

Time continues to move on with an unreal quality.

Generally calm today. Visited a friend as I occasionally did when the boy was in hospital and I had the morning off. But then came the smack in the face of the visit to the funeral directors. Horrible having to get together shirt and trousers for the boy's funeral. Prepare a last vest and get a clean trachy nose. No socks or shoes as he never liked them.

Felt sick as I walked there past a park we went to only a month ago and where he asked for a bike for his birthday. I knew then that it was unlikely I would have to deliver on the promise. But the finality of it still hurts. Watching with emptiness and yearning the kids playing on the climbing frame that the boy favoured. Unable now to go in the park - adults not allowed unless accompanied by a child. And I'm not a parent anymore.

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.