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.

How my heart behaves

The chest infection seems under control after a couple of difficult nights. But it doesn't get any easier to deal with.

The boy is so hard to understand. His signs are now so sketchy that even the wife and I have trouble in following them. More and more is guesswork or asking yes/no questions. It can be very tiring and frustrating for us all as he shakes his head when you have asked the wrong thing for the tenth time. But still we paint and cook.

His sleeping is all messed up and he has spent large parts of the last two nights awake. But despite lying-in the mornings everything looks so much of an effort for him.

The Community Nurses came to do bloods and change the dressing for his central line. They also explained to me, while the wife was elsewhere, what to do when he dies (death has to be certified by a doctor who has seen him in the last 14 days or he has to go to the coroner). And they asked if we had contacted funeral directors. We hadn't. So with the wife absent I made the call. Much harder than I expected. Found it really upsetting to be calling about the future death of a little boy. Had a b it of a cry afterwards. But at least it is done and we have the information.

Feel in mouring already. Which is wrong when he is still with us. Funny how grief manifests itself physically. A permanent lump in my stomach and feeling sick. Finding it hard to eat at the moment and eat rubbish when I do.

Every breath you take

His breathing is slow and accompanied by the hum of the oxygen machine.

He needed oxygen again last night. And had a temperature. It came under control. But he has a low level chest infection. The doctor has prescribed antibiotics but his lack of regular coughing will make any infection a serious risk.

The morphine and tumour have slowed his breathing right down. Before, it was 28-30 per minute. Now 12-15. It is disconcerting to hear him breathe and the silence for the next couple of seconds before the next breath. A painful silence. But he is in no discomfort with it.

Pale blue eyes

Time away from the boy is a mixed blessing. Gives you time to think. And that inevitably involves the boy. This may not be helpful.

My lie in today. Read the paper for a bit - a rare indolent pleasure. But then I started to think about the boy. I didn't nean to. I tried not to. I couldn't help it. And bit by bit I crumbled. The tipping point was when I realised I could no longer remember his voice. And would never hear it again. Without work to brace myself for, there was nothing to stem the ebb and no reason to. Found myself wandering into his bedroom to smell that he was still with us. The scent of medicines and equipment. The smell of his clothes and pillow.

I could barely bring myself to go downstairs. Seeing him mute and immobile set me off again. It took me a couple of hours and a short walk to get it back together. Not very helpful for the wife. When it is just me and him I put music on so there's not just the sound of my voice.

The boy barely has the wherewithall to shake his head or nod. The tumour or the morphine, I can't be sure. But as someone said tonight, a couple of days ago the body was gone but the eyes were still there. Now, not even the eyes. Makes the sounds of the kids next door all the more painful. It's not their fault but it is as if their normality is just rubbing salt in the wounds.

You are the everything

Tricky day. Long sleep the previous night counter-balanced by short sleep the following night. Add tired father and not a good combination.

The boy was awake for 4 hours in the night but asleep when I took over. Woke up within half an hour. Meant I had couple of hours without help. This is very hard now. Delayed taking him downstairs for a while. Relieved to see new carer. We did painting for a while until he looked tired and flushed. Hard to know if he needed extra morphine as it is so hard to tell if he is aggitated ie in pain. His face is impassive, capable of little nods for yes or shakes for no. And his right arm can still move but the signs are very unclear. Makes working out what he wants a frustrating lottery. Decided not to give morphine as his flush came and went.

Was relieved when the wife got up and a friend arrived to share the load. I was positively homicidal with hurt and tiredness. Then auntie m arrived with new boyfriend. What an introduction for him. The boy did cooking but looked increasingly tired and distracted, so I took him to bed. He complained feebly and soon fell asleep. Let him have an hour and a half until auntie arrived with pandas. Something nice for him to wake up to. They did painting while I had a break. After she left we did more cooking until bed time.

I had thought he had been pretty stable over the last few days. But the nurse who saw him only three days ago was shocked and upset at his decline in that time. Just goes to show how difficult change is to see when you are with him all the time.

Trouble every day

Not a great night for the boy. Needed oxygen for the first time in ages. Worries that this is the breathing difficulties that we have been fearing and thus the start of the next phase.

The boy needed oxygen overnight and on waking but it wasn't really keeping his levels up. The hospital say keep on with the oxygen but if it doesn't work and he's not in pain there's not much else to be done.

My final day at work. I have finally accepted the wife's encouragement to be signed off work. Work were very good about it. I had been resisting it up to now as I fear I will not return until after he is dead.

He was quiet when I got home but did some painting and overseeing cooking but moving his arm is clearly a tremendous effort. Then a quick visit from one of his night nurses who hasn't seen him in ages and bed.

You wonder

The poor little boy is so stoic in the face of what must be appalling pain in his head.

The boy had an unsettled night, despite regular paracetamol, ibuprofen and morphine. He was asleep when I took over but his arm and leg were moving jerkily. And his face was pink. It made for uncomfortable watching. When he woke it was distressingly clear that he was in discomfort and he wasn't really with it. His eyes were open and his arm was pointing down (monitor off my toe), to his neck (lower my trachy cuff) and out (I want to go downstairs) but they were almost reflex actions as he was not fully conscious. He was not responding to me otherwise. All that despite an extra dose of morphine.

We ended up giving him a higher dose of morphine and a steroid for the swelling in his brain. And after a couple of hours he sort of regained his focus on the world. But his arm is terribly weak, worse than yesterday. And his hand is able to do a few rudimentary signs but nothing else. His face is impassive as can can't make any expressions. Makes it so difficult to know what is going on in his mind and work out what sort of quality of life he has now .

He played a little bit but most of the day was spent quietly on the sofa, listening to the TV. Watching seems too much of an effort. He dozed on and off through much of the late afternoon. I kept stroking his head but I bet that was more irritating than soothing.

We got him ready for bed but he pointed vaguely in the direction of the bathroom. This was the most engaged he had been all day. After a quick bath, he just about had enough wherewithall to insist on a bit of play before bed but looks wiped out. I hope he has a better night.

Staring at the sun

There are no good days now. But this one was bad by our low standards.

Went to work but had to leave early after a worried call from the wife. She was very concerned that his vision in his remaining eye was going. When I got home the boy was not really responding to questions and couldn't say how many fingers were being held up. We gave more morphine and he sort of came back to reality. The symptom care consultant came over (following a call from us and chasing by Community Nurses) and said that as he had responded to morphine it probably wasn't his vision but pressure in the brain from the tumour ie a severe headache making him unresponsive. Also makes his eyelids swollen.

Even so, he was just about able to focus on painting. But he wanted the home schooling woman to use her hand do the painting - he adores her. And we have upped his morphine dose. He then spent a long time in front of the TV before overseeing more cooking, though this required another dose of morphine.

His right arm seems much weaker than yesterday. Able to point and do a few signs but not to properly grip spoons or other implements. And his head control seemed much worse.

At bed time, he insisted on a bath, which had to be with the wife as he is too unstable to be in on his own, even with support from the side. But he was too weak to insist on the rest of his routine.

Must I paint you a picture?

Got home from work today to find the boy on the sofa with the hospice nurse. Bit of a surprise.

They had rung the wife and she had told them about our fraught weekend. So they had come straight over. And will be back later in the week. Really, really good of them at this time. They have been really good to us over the last two years. It can be so isolating otherwise.

After they left the boy wanted to do painting, as he had done during the day. But his heart wasn't in it. He was just too tired. He had to sign all the colours, there's no speech at all now. Eventually, he submitted to going to bed. We didn't bother with a bath and went straight to a story. He was unsettled so we gave him some morphine. But he was jerky and couldn't quite drift off to sleep before the nurse came. When she arrived he made us do his trachy tapes but didn't have the energy to fight for the rest of his night time routine. So, I read him a story and we hugged goodnight.

And auntie has come up trumps again and got the window fixed.

How low

I don't know how far we are now from the end but it can't be far. It is so much worse a process than even my worst thoughts.

It is only a month since his decline showed itself. But in that time he has stopped walking, stopped being able to sit up, stopped being able to use his left arm, stopped being able to support his head and now is losing the last control of his right arm. It is incredibly painful to watch. As a parent you want to be able to help. And we are helpless. Impotent rage sweeps over me. But the boy is accepting of all this. He doesn't complain. He never says he's in pain - not yet anyway. He just tries to get on with his life.

For him, things go on as normal. Just what is normal slips away each day. He still wants to paint and cook but it is increasingly beyond him. His routines on waking and bedtime continue as they always were. Just there's less he can do and more we have to do.

In high wind one of our windows broke. Seemed like the final straw for me and the wife. She laughed hysterically and then cried. The boy put out his arm to comfort her by giving her a hug. How does he do it?

Breathe with me till dawn

Another difficult day. The boy gets weaker. The wife and I more frantic. Until finally we crack with each other.

Boy was awake at normal time. But after an hour wanted a neb and went back to sleep. Still looks so beautiful when asleep, as if nothing is wrong. Woke him up mid-morning.

We had a nice remainder of the morning watching TV and playing with his drum and tambourine. Then he wanted to do painting in the afternoon. For a change he wanted to sit on the floor not easy when he can't support himself. A mix of V cushions and wedging him upright did the trick. Even more unusually, he used his hand to paint with, inspired by Mr Tumble on TV.

As he tired, which didn't take that long, things got more difficult as what he wanted changed every few minutes. Even auntie coming over only helped temporarily. His speech is now so indistinct and quiet that most of the time you have to guess what he is saying.

By the time it came to his bath, me and the wife were at our wits end with emotion about his all round weakness, our tiredness and general wear and tear. I forgot his evening paracetamol and ibuprofen. Cue sharp words from the wife, with me responding in kind. And ending with both of us shouting. Unimpressive all round.

Sad end to the day. And not an enjoyable day. The days are too stressful, too emotional and too tiring to enjoy.

This corrosion

The boy gets weaker day by day.

The wife's lie in. My day with the boy. Despite a broken night the previous night the boy was up bright and early. He was happy to watch TV between the yawns. But secretions constant, making it tiring to do constant suctioning of the trachy.

The consultant came over for a flying visit, having not seen him for a couple of months. What a contrast for her. Then Granny came, so I got the boy downstairs. We did the usual painting things. The boy's coordination of his right hand gets worse. He is very shakey. Rather hit and miss whether he gets what he's aiming for. After getting me to mix a wide range of colours, he painted a picture of my red and yellow T-shirt.

The wife got up. I got breakfast before she went off for her weekly psychiatrist session. His home school came over and I took the opportunity to strip his bed (he has vomited in the morning for the last two days) and remake it.

By the time I came downstairs, the boy was looking tired. I persuaded him to go to bed and I would read him a story. He lay down, had a nebuliser but would not go to sleep. After almost an hour, we came back downstairs and re-started painting. The wife came back with a new book. But the boy wanted only to know the name of the book and go back to bed. Didn't want the wife
to come up with him. This time he did sleep.

Didn't want it to ruin his night, so only let him have 45 minutes. He was hard to wake up and only the arrival of auntie stopped him going back to sleep. He did more painting, lurching forward from his chair to get the colours to be mixed. His drooling getting worse as the day wore on.

Despite a last minute tantrum, we got him bathed and the tapes changed. He even washed my face for the first time in ages. He still does his pre-bedtime routine but is so, so weak.

It is so incredibly tiring to look after him. There is always something to do: suctioning, preparing medicines, keeping his right eye lubricated, dealing with calls from someone medical, anticipating in his play and changing the toys every few minutes. It never stops, now that he cannot get anything for himself and his concentration span is reduced. Work was harder than being at home a month or so ago. Home is now infinitely harder work. Exhausting and not necessarily enjoyable.

Davni Chasny (Those were the days)

A lie in for me and the boy. He is up after me. Almost midday before he is up. An unsettled night for him, vomitted and required morphine. The vomit may be tumour-related or constipation. Morphine is great for pain but wreaks havoc on digestion.

He is happy to paint and do cooking in the early afternoon. Oddly hard work as he is immobile in his chair. So, you have to do the running around. He does a bit less and less as the days pass. He is less able to control his 'good' hand, which is now quite shakey. He is happy to have his home schooling person come over for a few hours. But is tired when she leaves. We watch TV for a while before he wants to go to Mummy and Daddy's bed. Mummy reads him a story before he decides to decamp to his bed for a nebuliser and an uncharacteristic nap.

In the meantine we get him laxatives. Anal pessaries - nice. But it does the trick and he is barely awake before his bowels open. Messy but good.

As a treat, we invite auntie over. They paint and she does a picture of a panada for him. But he is inconsolable when she leaves. He wants to go to her house. We mollify him with more cooking and the promise of a new recipe tomorrow.

Then it's bath and bed. After such a short day, who knows what kind of night he will have. And worry for me in that the left side of his mouth seemed a little droopy. A bad sign. He had this when he was diagnosed for the first time. And the tumour was massive at that point. They said then that he only had a couple of weeks to live. A comforting thought to take to bed.

All these things that I've done

First day back at work. Work is easier than looking after the boy. But it is hard for thoughts not to drift back there.

At work I somewhat fitfully go through my emails. Thoughts elsewhere and on the boy. He slept well. Too well. Only woke up at nearly lunchtime. This was another sign of decline that the doctors warned us about. That his waking time would reduce. The wife wanted to wake him up. But gave me an anxious call first, her voice trembling with emotion. Another more emotional call a while later to say he was awake but not wanting to sit up. And finally a further call a further while later to say he was upright in his chair painting. Any wonder it was hard to concentrate at work?

Left work early. The boy was watching TV when I got back. He gestured that he wanted to go upstairs while I got changed. Carried him up, supporting his neck as it lolls a bit like a newborn's. I don't know what the biodynamics of carrying someone with little muscle control is but he is so heavy to carry now. Arms and legs not helping distribute the weight. And his good arm making irregular forearm smashes to my neck.

When I put him on the bed he says he feels sick. Probably the most movement he's had all day coming upstairs. We give him some anti-sickness medicine but it may be really headache nausea. We play on the bed whilst the wife goes to the chemist. A bit tricky to get changed as I can't be sure whether he's suddenly going to lurch off the bed while I do so.

He says he needs his nappy changing. Once done he says that Mummy and Daddy's bed needs changing as a result. I say he didn't wet it. He insists he did and it must be changed. Rolls around the floor in a circle using his 'good' leg for added stroppy emphasis. I give in. Cradling him in my lap we throw the pillows off the bed. Then he mumbles "I know" and wants to go to his room. I carry him there, whereupon he says he wants the chair which he used to sit on whilst his bed was being changed taken into my bedroom. Sweating profusely, I grapple with the boy in one arm and the chair in the other and stagger back to my room. Plonk him on the chair and try to cradle him with one arm whilst stripping the bed with the other. With relief, I readily agree when he says he wants to go back downstairs.

He wants to do more cooking. He likes getting the ingredients ready. Pointing to the recipe and telling me what to bring and then what utensils he will need. We start to make pastry but he keeps spilling the flour as his 'good' hand has lost fine motor control. Eventually, he gives up and we do pretend cooking as this is less messy. He loves banging the masher in the bowl and the noise this makes.

He is good with his bath. But is refusing the bath chair. So I have to hold on to both arms while the wife washes him. And then the wife reads him a story before he goes to sleep.

I cook the wife and I a meal but am worn from two hours of looking after him. It is so physically demanding and mentally draining.

My body is a cage

Having a lie in is a mixed blessing. Gives you time to think about the situation and worry about what new developments have happened since the previous evening. Makes every morning a thing of dread not hope for a new day.

Eventually steeled myself and went downstairs. The boy was watching TV. Completely unable to sit up, he was surrounded by myriad cushions propping him up in all concievable ways and his favourite yellow cushion on his lap. His speech was terrible. The odd syllables and mumbled word. But essentially mute. Absolutely crushing. And then he got restless again and we gave him morphine.

He did rouse himself to do half-hearted cooking while Mummy had a rest. But was hard for both of us. He was frustrated when he made the effort to say something but I didn't understand. And I was frustrated when he would point vaguely at something and then shake his head every time I picked something up where he had pointed. The constant guessing game was wearing us both out. I was losing my temper when he beckoned me over and gave me a hug. Too, too painful.

Hard to know whether what he was has disappeared elbowed out by the cuckoo of the tumour or just harder for him to get out and us to find. The morphine doesn't help. I didn't enjoy the junkie wasted look yesterday when the morphine first kicked in. The vacancy in the eyes as his world seemed to slip out of focus. But what to do? The inability to get himself comfortable as the pain in his head wouldn't leave him alone is no better.

Just when the day seemed irretrievable, he signed he wanted auntie. After a few fruitless calls, we got hold of her and went over.

He seemed cheered by the change of scene. He sat cradled in my lap at her back step and called pitifully quietly for the cat. But he didn't come. So, the boy agreed to make tea. He managed to stay mostly sitting upright with limited support while he helped make the tea. He put teabags in the cup, poured in the milk and stirred the tea. Was good to see as he has been uninterested in doing this at home.

And then the cat came. The boy immediately tried to drag himself to the back step to see. The cat even came close enough for him to use his good arm to stroke it. He was so pleased. It seemed such a small victory on such a bleak day. We could hear the announcements in the nearby park. Reminded me that this time last year we went. We were just out of hospital as he was on chemo then but enjoyed himself so much on a little roundabout. Such a contrast this year.

Cheered by the cat, he wanted to play 'house' upstairs with auntie and Mummy using auntie's duvet. He sat, king of his little palace, receiving visits from chi chi panda and big panda. A little bit of 'happy' time. We even played one round of hide and seek, with me squashing myself with him in the shower whilst we hid from auntie. He used to do this alone but there are too many hard surfaces to let him do it alone now.

After some deliberation, we gave him more morphine before bed time. Helped us all have a better bath time than the last couple of days. But it made him so, so floppy and hard to handle in and out of the bath.

And back to work tomorrow.

Young offender

After a more cheerful morning than of late, a less happy afternoon.

The boy was awake in the night again for some time. A lie in partially compensated. He was more talkative and more engaged once awake than he has been for a couple of days. Happy to come downstairs and discuss his cooking needs. Auntie rang to invite him over. This left him with a dilema - cooking or go to auntie's house. He solved it by deciding to take the ingredients to aunties house. Unfortunately, he is used to being in aunties kitchen without me. But auntie wasn't sure she could cope and so wanted my help. The boy wouldn't allow it. So we ended up chatting and then watching TV.

By lunchtime he looked very tired so we went home with auntie so he could cook lunch for her. Even though he had more paracetamol and ibuprofen after she left he not could settle and was constatntly wriggling to change his position. So much so that we rang symptom care. They said we should give morphine in case the wriggling was pain related. It did the trick but the wife and I were unhappy that his tumour pain has progressed so fast. There's a small chance it is an infection or some such, but that doesn't seem likely.

Once calmer, we did more cooking until bed time. We had hoped to avoid further morphine but bath time and trachy tape change was a real ordeal. He wouldn't cooperate, thrashing around and shouting "no tapes, no tapes". So, after enduring the tape change we gave in and gave him further morphine to settle him for the night.

The current rate of tumour progress is numbing and giving him morphine seems another tragic Rubicon crossed. Who knows what tomorrow holds in store?

Wheels on the bus

The boy had a lie in. But was awake for two hours in the night. So, both things sort of balanced each other out. Although he started the day reasonably cheerful, that soon dissapated.

He needed paracetamol and ibuprofen twice overnight, as his heart rate was going up (but no temperature). Indicative that the pressure in his head from the tumour is hurting him, or at least giving him discomfort. We are going to give it on a regular basis now to see if it improves his moods.

When I take the trachy cuff down, he talks as if he was a less comprehensible Marlon Brando in the Godfather. Balance as bad as yesterday. But a bit more cheerful than yesterday afternoon.

Post brings an appointment for his next MRI and associated clinic appointments. All arrived in the same envelope but little evidence of coordination as clinic is at same time as MRI. All are pretty futile as things stand. So, try to ring oncology outpatients to cancel. Get through
eventually but am not confident that the young man I speak to has cancelled them. He gives the impression that he is being asked to pilot a space shuttle rather than a computerise booking system. I may be being unfair and it is just a reflection of my impatence and the pain that the MRI is now so unnecessary.

The hospice come for a couple of hours. He sems happy to play a jigsaw and wave us off. Allows us to go out for an hour to discuss me returning to work and support for the wife. When we return we find that the jigsaw did not last long and most of his time has been infront of the TV.

We do pretend cooking in the afternoon but he needs a supportive chair to do so. He is listless and perhaps bored. So many of his toys are useless now. So, it's either cooking or painting. Will have to think about what is appropriate for a child in a chair.

After one abortive attempt to go to the shops (we get across the road before he decides to go back), we do eventually go and watch for buses on the way back.

Bathtime is a trial as he refuses to have it, writhing on the floor. We tell him he won't get a second chance and put him to bed. A little while later he changes his mind and wants the bath. Tired of the constant battle we refuse, whereupon he rages round the bed wanting the bath for some time. Intermittently begging please to have the bath. Eventually, it subsides and he accepts a nebuliser and is quickly asleep. Unhappy end to the day.

Find myself more easily upset than before. It is such a strain and I'm not currently coping very well. Everytime a friend or a medical person rings and I have to go through the situation I can barely stop my voice cracking. The wife goes for her regular sessions with a psychologist. I don't anymore, but that's a story for another day.

So Fast So Numb

And now, to keep him safe, he has to be in the car seat. Even V cushions don't provide enough support. The fire is slowy going out. Little flickers every now and then, when he deliberately puts yoghurt on little panda's nose. But less often now.

Kiss

Horrible day. The boy is getting weaker. And for the first time since last December's operation was not cheerful.

My lie in today but it is a mixed blessing, as you worry what will have changed overnight. The boy had another early start which is not good. His balance sitting down is now very poor and he easily over-balances to go sprawling. He still wants to cook but is no longer really up to it. He was not really cheerful at all today. He looked permanently worn out and everything is an effort. We did go out briefly to the shops to get ingredients and so he could watch buses.

It is so, so hard watching his decline. Tomorrow should be his first day at nursery but there is no chance of him going at present. Or ever? I don't know what to do. I veer between anger and irritation and getting upset. He blew Mummy a kiss while I was drying him after his bath and I nearly lost it completely.

Watching a child die is so much harder than watching a parent die. The latter is almost an ok part of life's cycle. With a child it is so unfair. A life hardly lived. He enjoyed his life so much, despite all he had been through. And now it is all being cruely taken away piece by piece.

Get your snack on

After the boy's lie in, thankfully a better day.

The boy was quiet in the morning, physically and vocally. But a visitor came from the organisation that helps get him to hospital. He was pleased and happy to do a jigsaw with her. Then we went in the garden to show her his bubble machine.

After she left, we finished off making the trifle from yesterday. Just in time before auntie came in her lunch hour. So, the boy made her try it. She said it was nice.

After auntie left it was back to cooking. This time poached plums in creme fraiche and chocolate. Which he made twice. With no room left in the fridge we had to give it to the neighbours. But without telling him, or he'd have been upset.

By late afternoon he was tired and did relent and watch TV for a good while. But once over, it was back to cooking. And when that was finished he was looking through his recipes to decide what to make next. Assessing what ingredients were required and whether we had them in the house. By this time he was much more vocal and ordered me out of the house to get the
missing ingredients for cooking tomorrow. By the time I returned it was too late to cook anything, so after considering the matter, he decided to cook "not real" (pretend) before going to bed.

He is wobbly but determined in his ways. Only occassionally frustrated by his useless arm and inability to walk.

Sit down

Sitting here watching the boy as he gets a much needed lie in.

Hard to watch over him without thinking ahead. Makes it an oddly stressful task. Hard to watch him try to turn over with his useless left arm getting in the way. It is still strange to see him with only one hand behind his head rather than two.

On waking, I notice he is now using his good hand to move the paralysed one into position. So he has both hands above his head when his nappy is changed.

When the trachy cuff is down, there isn't much speech left. After achieving sentences only a few weeks ago, he is back to only one or two words at a time. So unfair that after progressing physically and mentally over the last three months he has lost all that progress and more in the last three weeks. We always try to live in the present but it is hard to stop your mind looking backwards to what was or forward to what will be.

Running Wild

Not a good day. Over-tired boy meant a difficult ending to the day. And his speech is deteriorating rapidly.

The boy was awake very, very early. Yawning by 8.00am. Got him downstairs and sat him on a kitchen chair so he could oversee the washing up, since can no longer stand up to do it. Then he decided he wanted to do more cooking. So, we went to the shops. On the way back, he said he wanted to go to the playground. First time I have been there with him since I don't know when.

Was the nicest part of the day. He went on the little slide and the swing. Then wanted to go on the big slide. Was a bit dangerous but I could hardly refuse. I had to carry him up the steps and then run round to the bottom of the slide to get him as he came down. He saw other children running and said he wanted to run. Holding him under both arms, I helped him walk a few steps before it became too much for him. But it was nice to sit on the bench with him and watch the other children play. He saw a girl cycling and said he wanted a bike for his birthday. I agreed. Hardly a promise I will have to fulfill.

We returned to find the hospice there. They looked after him for an hour whilst the wife and I went for a coffee. Had to come back early for the physio. But they were late. Have brought him a bath chair and a mat to lie on when he can't sit up any more. Dispiriting planning. Compounded when I decided I had to ask the hospice to tell me what I need to do with coroner etc when he dies. Didn't tell the wife.

The boy was worn out after the visitors. But still wanted to cook. Tiredness made it a bit of a strain for him and a trial for me. So, we decided not to bother with a bath and let him watch TV instead. Inevitably, at bed time the boy made a fuss notwithstanding how tired he was. I rather lost my temper - hardly a great father - and bathed him with ill grace. Read him a story and gave him a neb. He was asleep within seconds.

So much want our remaining time to be memorable and nice. But it remains, sadly, a slog. Angry at my helplessness.

(Don't fear) the reaper

Still very tired. Having trouble that I am not at work but it isn't a holiday.

The boy went to auntie's house in the morning. Keen to tell me he had seen the cat and given it some milk. But no kitten. And the had played 'house' with auntie's bed. First time he has wanted to do that in weeks.

He was looking very tired on returning, even yawning. Watched TV for an hour but then wanted to do some cooking, despite my efforts to dissuade him. Decided he wanted to make trifle. But was too tired to go to the shops. In the end, he let Mummy go for him.

When she returned, he was very keen to make the trifle. Happily cutting up sponge cake, strawberries and stirring the jelly as it dissolved. He was good at helping Mummy whisk the cream (refused to let her use the electric whisk because of the noise). He helped spoon on the custard and whipped cream. And finally, put on chocolate buttons to decorate. Even though it was nearly bath time when he finished he wanted "more cooking". So, we made a banana and honey smoothie for Mummy.

Was good at bath time. Keen to clean the bath with his toothbrush, for reasons that I failed to understand.

He had a good day, even though I fear that speaking is becoming more difficult. But I am still tired as this is my first real time off for a year. My being home is probably some help to the wife. But it isn't restful for me. Feel that I want a break that involves not doing much and being slothful. But that just isn't possible.

What else is there?

The boy had an early start. Too many visitors meant he was wiped out by the end of the day.

An old friend of the wife came over in the morning. Brought the boy a bubble gun. He was thrilled. Happy to sit on the back step and pull the trigger to spray bubbles at me. Lots of laughter. But he was worn out when the friend left.

Needed some quiet time but auntie m and oma came over. The boy watched TV for a while and then I carried him down the road so he could look at house numbers. We then played upstairs on my bed. He is more and more unstable. Not always able to remain sitting upright. Sometimes falling over as he can't use his left side to support him. More deterioration since last weekend.

He did stay awake until bedtime, despite how tired he was. Earnestly told me he was happy, as Mummy doesn't like it when he is sad. Read him two stories at bedtime (one old one, another a new one) even though he was swaying with tiredness and gave him a nebuliser. Couldn't find it in my heart to refuse his requests.

Worried that now I've stopped working, I will be ill. Sore throat and feeling of being completely wiped out. And inexpressably sad.

Grey clouds

The boy had a good sleep but was very lethargic during the day. For the first time he seemed to be aware of things he could no longer do.

On Thursday, I left work early again. The boy was relatively active. But I was very, very weary. I had to make apple and custard pie with him. First time I've made pastry in fifteen years. Turned out pretty well. Bathtime was again a battle field. The boy wanted to do more cooking, so didn't want bath, didn't want tapes changed and didn't want to go to bed.

As I didn't go to work on Friday, I looked after the boy. He had a good night but was yawning after he woke up and didn't really want to get going on the day. Fine by me as without the adrenalin from work to get me going, tiredness and sadness just washed over me.

Granny came over, which encouraged him to get going. But his left side is pretty immobile. He was trying to crawl away from Granny but could barely manage it. And for the first time he looked a mixture of irritated and uncomprehending as to why he couldn't manage it. I guess he hadn't taken notice until now as his various hospitalisations have periodically affected his ability to do things for a while. But most of the time he is good humoured. He even said "I am happy" when we were playing with the animals.

Granny is going away for a few days and predictably got upset when she said goodbye. Again asking me if he would be alright. I wasn't going to pretend it would be.

Left the wife with the boy while I went to buy some jeans. I only had one pair and those were 'distressed' way beyond anything fashionable. The wife as upset when I got back as she seemed only to have just acknowledged that he can't really do anything with his left hand.

After more TV watching he decided he wanted to go to the shops. And for the first time that day looked truely animated, reeling off a list of things to buy. Most of them related to recipes he wanted to cook. He was very good in the shop, telling me what to get next and paying the assistant. He retained his cheerfulness at bathtime, even trying to follow a modified version of his old active routine. Gave me a nice kiss goodnight and waved me off, so Mummy could read him a story.