The Garden of Blighty

The garden makes the boy nervous. I say garden, I mean little courtyard. I say little courtyard, I mean postage stamp of concrete.

The garden has gravel and uneven surfaces. All of these worry the boy as they throw his balance problems into focus. We had been pretend cooking and needed some mint from the garden. Initially, he made me carry him whilst we went outside to get it.

Since it was a pleasant evening for a change, I was showing him other plants. He spotted a ball he had thrown from the safety of the doorway a few days ago. And his little watering can. This encouraged him to want to do some watering. I left him on the bench and went to get his shoes. With his shoes on he was happy to do watering whilst holding my hand for support. Eventually, he did have a few forays on his own round the garden. Carefully picking his way round and crouching down to water the pots. He gets so upset if he spills water outside the pot because of the mess. And worse if he gets some water on himself.

After a nice time, I expected to sleep well. But it was not to be. Restless sleep filled with stress and anxiety about work. And, inevitably, about the boy. Couldn't help recalling that there are only five children who we have met in hospital that we have kept in contact with over the last two years or so. Of these, two are doing fine. But three didn't make it. Not a representative sample but doesn't cheer me much.

Sugar crystals

The boy had a big trip to the market, petting zoo and playground with Mummy. Played with a little girl. She encouraged him to go in the sandpit. He doesn't like sand, so wasn't very keen. But he did go. He went on the slide in the sandpit which had sand on it. He started to get upset. "Don't panic" said the wife. "Yes panic" replied the boy. When he came home he looked tired, but not so tired that he didn't want him and me to make biscuits.

Carnival of sorts

There may not be many precious moments left with the boy and I can't capture them so they will last my lifetime.

I look at what others write that capture the essence and poignance of a moment. Mine seem prosaic and stacatto reports. I feel this acutely at the moment. I want to store up happy memories for the bad times ahead. A source to dip into of strength for the tears to come.

We went to auntie's house yesterday. Had a great time. There was nothing special about it. But it was a warm sunny afternoon in a summer of wind and rain. The boy was in a good mood and was happy to let auntie and I talk intermittently while he watched TV or played with toys.

After he and auntie had made tea and coffee, we sat in the garden. The boy was very excited as the black cat was there. The boy poured him some milk and then sat on the bench to watch him. I sat on the doorstep enjoying the sun - not something I ever do during the week. Auntie sat by her flowers. We chatted about nothing much amiably with the fragrance of lavender adding to the warmth. The rustle of her bamboo like a whispering screen from the rest of the world. And the pink bouganvillia a showy, exotic splash of coulour contrasting with the deep green of the fig.

The boy got the confidence to go and stroke the cat. He kept gathering his confidence and then tottering unsteadily towards the cat, only to have the jerkiness of his movements startle it into moving to a different part of the garden. After he had stalked it unsuccessfully a few times, he managed to get near enough to crouch down beside her. He put out his hand with some trepidation and was able to restrain himself to stroke it gently. He was thrilled when he had managed it.

Eventually, the cat decided to go somewhere else. The boy waved goodbye and we went back inside.

A wish away

"Man"
"Big car"
"Lights. Yellow, green, blue, pink"
"Stamp, stamp"
"Yellow train. Not mine"
"Justin. No Mr Tumble"
"Ambulance"
"Don't be sad. Next time"

This was the boy's explanation to me of his "Make A Wish" day. He hasn't been well over the past couple of days but the wife and I ageed he seemed just about well enough to do it. So, off he went with Mummy. And I went to work.

He had been collected by a driver in a stretch limo. The limo had fibre optic lights inside which changed colour. He thought the car and especially the driver were great. He had enjoyed watching cars and buses from the limo.

They arrived at the TV studios and saw a couple of ambulances being used for a hospital drama. He went to see Justin Fletcher (a kids TV presenter) who, crucially, plays Mr Tumble. The boy had brought a painting of a flower for Mr Tumble to look at if he felt sad. Justin agreed to pass it on.

It is odd. The boy knows that Justin is also Mr Tumble in funny clothes and a red nose. But he also sees them as two quite separate people. Occasionally, when Justin is on TV I will say to the boy "look, that's Mr Tumble" and he will say "No, Justin. No red nose".

The boy was a bit upset to hear Justin rehearse Mr Tumble without the clothes and red nose. But was mollified when told that he was Mr Tumble's friend. And then really enjoyed it.

We had originally thought that the boy could go home by train. But had agreed given his condition that it wasn't sensible. Unfortunately, the wife forgot to say this to the person accompanying them who said it to the boy. He was thrilled and wasn't to be denied. The boy thinks he has special train-summoning powers. He stamps his feet on the platform and a train appears. It was an overground train not his usual tube train, hence the not mine comment.

On returning from work, I asked the boy if he had had a nice day. He said yes vigorously and then explained the highlights. Mummy had told him I couldn't come as I had to work, which is why he told me not to be sad and I could come next time.

Thanks to Justin and Make a Wish for giving the boy a very special day.

Guilty of love

"Dada. No seven. Six. No more"

As if the guilt from working wasn't bad enough. Had a meeting yesterday which finished late. Was over an hour late home. Greeted by the boy wagging his finger at me. Looking solemn and saying I was home at 7pm. Should be 6pm. And then having it repeated at 15 minute intervals until he went to bed.

Doesn't help that I've been feeling increasingly frustrated by work. Wanted to be working less hours than I am by now. Wanted some time off. But the project has stretched on and not yet reached a conclusion. The ideal of moving to more part-time working seems to stretch endlessly, tantilisingly out of reach. Not helped by having to work late again tomorrow. And I'm going to miss the boy's Make-A-Wish trip to see Mr Tumble on Friday.

Bath House

After the weekend's excitement we are keeping it low key for the boy in the hope that hope that can kick the cold and get off oxygen overnight.

He has a big week or so coming up. At the end of this week the Make A Wish people (pushed by the hospice) have accelerated arranging for him to go to TV studios to meet his favourite TV character - Mr Tumble. I won't be able to go - work. And at the end of next week, he has his re-scheduled gastrostomy operation.

Meanwhile, bath time has got a bit more interesting. He has stopped wanting to have a bath with Mummy. I have been saying for a while that he is too old but she likes it. Then, on Saturday night after I got him undressed, he said "Mummy out of the bath". She didn't believe him but he meant it. Since then he has refused to have her in the bath. He wants to bathe alone. Makes baths a bit more tricky as the bath is slippery and there's the worry of water on his central line or, worse, down the trachy. We are all getting used to the new routine. But he delights in shrieking as he slides around the bath, splashing vigorously. And I age visibly as I try
to cling on to his arm.

The lion sleeps tonight

There are times when it seems that we are anticipating the boy's end too much.

He is still not recovered from his chest infection and needs oxygen overnight. But despite this, the wife was very keen for Oma and auntie m to come and see the boy. She wanted them to see him while he is as he is now and not when he's in decline. She rather pressurised them into making the visit.

I gave them some time to talk by taking the boy out shopping and then to aunties before returning home. The boy looked very tired and wanted to cling to Mummy on returning. He did gain confidence after a while but was not quite on top form. Even with the car with the roof that goes up and down. Was worn out after they left and sat quietly watching TV. His temperature went up before bedtime. Paracetamol controlled it but he needed a fair bit of oxygen overnight.

Been fretting about whether we should have gone for more chemo for the boy to extend his life. Had been suggested by another parent in a similar position. Matched my own worries. But, the trachy is always the worry from chest infections. More than likely this chest infection would have put him in hospital already. But without chemo we end up with less time overall. Just never ever clear cut 'right' answers.