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Living With Luke 100

Hard to believe that this is the 100th blog in what started out as a way of putting down my thoughts, feelings, hopes and fears on (digital) paper.

100 blog posts…some were good, some were great, some were ok, but all of them were about Tiddles and his relationship with The Old Man. Can I go on? Do I want to? Time will tell, but in the meantime, here is number 100, and it’s a sort of sequel to the book I wrote a few years back, ‘Life Lessons from Living With Luke’, so look at this as ‘Life Lessons II – This time it’s personal!’ or even ‘More Life Lessons – The Smell of Fear’.

1. You will always be second best…If you’re lucky…

This one came about a few years back, and it was words of wisdom imparted to me by the original Autistic Shadow, Paul Tyrrell, moments before we started a performance of Living with Luke, and it’s stuck with me for all those years. It’s this…You spend a good deal of your adult life making somebody the centre of your world, be they wife, girlfriend, husband, boyfriend, son/daughter, etc. only to find that – once a baby comes into the picture, You Will Always Be Second Best.

And it’s not deliberate, there’s no rules that say this is going to happen, it just does and nothing about it will change for the rest of your life.

Some/most people can accept this – eventually. Others can’t and it will eventually take its toll on the relationship. It wasn’t until Paul said it that I realised that it had indeed happened to me, without even realising it. But it can be quite a shock to the system, especially if or when a second or third or more children come along and you gradually move down the importance ladder faster than a Spurs premiership title challenge – that’s English football for anyone who doesn’t get that reference. But you get the idea. Without you knowing it, You Will Always Be Second Best.

2. Take the chance.

Take the chance sort of follows on from the last blog where I said that Today is you last day and went on to relay a story about Tiddles and I sharing some time together. I could’ve gotten out of the bath – don’t think about it – or he could’ve gone back to his room, but neither of us did. We just ‘were’ together. It was the same on holiday. Tiddles loves swimming in the sea, or at least being in the sea and has no fear about getting in there. I, being some kind of loon, clearly, go in with him, both to keep an eye on him and, more importantly, spend some time ‘with’ him. He likes me being there, he’s used to me being there, (dare I say that he might even ‘enjoy’ me being there) so I have to take the chance and be there. And BE there. Being present, enjoying this time that he has granted me, in spite of the discomfort from the cold water. There aren’t many opportunities to have that time, so I need to accept them when they come along.

3. Speak when you need to.

There are times when you need to say something. And there are times when you need to know when to shut your trap. Usually with Tiddles, it’s ALWAYS the latter – or at least 95% of the time. The issue with Tiddles is that he has learned responses to most standard questions or requests or just general statements. Amongst the popular ones are…

‘Here’s your breakfast, Luke.’ ‘Here’s your dinner…’

‘Are you having a shower today?’ ‘No shower!’ (Before proceeding to get into the shower.)

‘Why are you shouting?’ ‘Are you sure?’

‘Good morning!’ ‘Good night!’

‘Hello…’ ‘Goodbye!’

‘Are you having fish tonight?’ ‘Not tonight, it’s too late, it’s 6 o’clock, Wendy will be back soon!’

Until in the end, you just learn when to shut up.

I still haven’t…

I can’t not speak to him. However, I am learning. I wave a lot at him now. Sometimes he waves back, other times he just waves me away.

But you just have to try and learn when to speak.

4. Sometimes, all you need is somebody to hold your hand.

I get angry, I get annoyed. On rare occasions I completely lose my temper. I have patience…most of the time. I saw a post the other which was relatable…

I tend to have a lot of patienceusually when other people are around…’

I was tired one time. Tiddles was sat at the other end of the sofa, so I took a chance, laid my head on his lap and closed my eyes. Within a few seconds I had dozed off.

I was awakened a few minutes later with a sharp pain in my head. I awoke to realise that Tiddles had punched me in the head to get me to wake up.

Naturally, I wasn’t happy – well, who would be?? I sat up, annoyed, hurt and moved back to my seat.

But then I thought, I’ll just hold out my hand to see if he’ll take it. And he did.

And we sat there like that for a few minutes.

And it sort of made it all ok. For a while, anyway.

Which just goes to show. Sometimes, that’s all it takes…

5. Be selfish.

Tiddles is the epitome of the current trend of ‘being selfish’. In other words, looking after your needs first.

Because everything that he does, he does for himself and stuff everyone else around him. There isn’t really anything that he does for anyone that isn’t driven by this. It’s his way, or there’s going to be hell to pay.

And just look at the abundance of videos on YouTube that extoll this virtue. They all say the same thing…

Take care of yourself and your needs, first.

It’s why they always tell you to put your mask on first on the airlines, rather than attempting to help young children first.

You can’t help anyone if you haven’t helped yourself first.

And whilst it would never occur to Tiddles to even think about helping someone else, first, second, or even ever, he does have the whole taking care of himself first thing, down pat.

He makes sure he is comfortable, that he has everything that he needs around him, that he is pretty much the master of his own time and space. He’s almost like The Doctor in that respect…

And whilst the rest of us run around, catering to his every whim, he shows that to be calm, comfortable and lead pretty much a stress free life, you just need to be selfish.

So there you are – 5 more little life lessons that, whilst not going to change the world, may just make your day just a little easier?

I’ve said it before, that we can all learn something from these special people, because whilst their obsessions and obsessive behaviour can be infuriating at times, by the same token, it can also be quite calming to live by a set of rules that have the potential to keep you safe and/or happy in your life, however that life turns out.

And that’s that. 100 blogs about my life Living with Luke and as it turned out, Jake and all the challenges, frustrations, laughter, humour, but above all else – Love.

Because that’s what these blogs have always been about.

They were and remain a love letter to my little boy, my silverback, my Tiddles, my Quiet Prince…

My Luke.

The End…?

Living with Luke 99

Today is your last day.

Weird, isn’t it, to think that this is your last day?

Not YOU, specifically, although that could very well end up being the case. I know that it will be mine one day – who knows? It might very well be today.

This isn’t a morbid thought, despite appearing to be so. After all, who wants to spend their last day reading about how it could be their last day?

No, the feeling and thoughts behind this statement are very simple.

We don’t know what is going to happen to us next.

The next week, the next day, the next hour, minute, hell even in the next second.

We can plan what we’re going to do, but there is no guarantee anywhere that those plans will be carried out. We can hope, but literally in the blink of an eye, it can all vanish – like an old oak table…

Case in point. My grandad, who I loved greatly, was one of, if not THE most, gentle, kind, easy going, yet incredibly hard working men I’ve ever known. Teller of tall tales and rubbish jokes that were so bad, that my brothers and I still quote them to this day. Always ready and willing to help out, lend a hand, move something, build something, he remained fit, healthy and strong for pretty much all of his 91 years. He wasn’t big or muscular, but boy, could he work! He could’ve gone on forever, it seemed, and we genuinely thought he would until one evening, he turned on his gas oven to make his dinner, walked away, sat down and dozed off. When he awoke a while later, it was dark, so he turned on the light – and blew up the house. Literally in the flick of a switch, his and our lives were changed forever.

Why am I telling you this? Apart from it being the spectacular ending of a ‘gentle’man, it illustrates just how fragile ‘it’ all is, how this is your last day, whether you know it is, or not. And it is the old cliche, that every day IS a gift, because you really do NOT know what’s around the corner.

And if you DO manage to live another day, then don’t squander it, because THAT could be your last day.

But the ACTUAL reason for this post – we got there in the end – is time well spent, and this is the point I’m making.

I was having a bath yesterday – don’t think about it – when the bathroom door suddenly crashed open in the only way that Tiddles seems to be able to open the bathroom door – like a bomb going off. Realising I was in there, he shut it again only to crash it open again 5 minutes later, this time coming in carrying his laptop table with his laptop on it. He then proceeded to set it all up before sitting on the toilet to watch his YouTube videos-whilst I was still in the bath.

And there we sat, for about an hour, me listening to my music and reading and him watching videos of Tintin or Fievel goes West or whatever the hell it was he had on.

Was I annoyed? Initially, yes. But, apart from the perils of having only one bathroom/toilet, it was quite nice to be able to share that time with him, without him getting annoyed, or frustrated or upset at my being in his presence with my music on. We even had a brief chat. Well…I say ‘chat’. I asked him if he wanted chicken for dinner and he nodded his head – it passes for a chat in our house.

Being a parent to Tiddles can be an exhausting process and it seems to be getting more tiring as the time goes on, but really, there’s no other option. I/we deal with it and him and all the challenges that living with Luke brings, and there isn’t really any way that that is going to change.

But it will, one day.

We don’t always get what we want, but sometimes we do get what we need, to paraphrase The Rolling Stones. The trick is to realise that you need to take these moments when they come, because you never know.

Today could be your last day.

Live it well, my friends.

Living with Luke 98

He struggles socially and sometimes it can leave him absolutely exhausted.

Certain things can make him anxious and at times ‘tetchy’.

He’s interesting, intelligent and undoubtedly handsome, but even then, he can find life a little bit challenging.

But, finally…after a few years of trying, of not wanting to face up to the reality, he’s now acknowledged that he is, indeed, Autistic.

But it’s not Luke…it’s Jake.

Yes, The Eldest Child has finally realised what TCMH and I have wondered about for a few years and accepted that he is also Autistic like his younger brother.

But it’s only now that he’s had the courage to tell everyone else about it. And I can see why, because for Jake, he’s spent pretty much his whole life being the brother of an autistic boy, being Luke’s voice when he was growing up, his protector. But now, he’s the Autistic brother of an autistic boy. The Autistic son and that label can sometimes be a difficult thing to accept, even if you know – deep down – that it’s true.

But that’s now his truth. And although it’s just a word, that word has answered a lot of questions and is now the answer to many more that suddenly have arisen in the subsequent weeks.

And he’s quite proud of it, I think. In terms of his life going forward, nothing has changed. He’s still hyper intelligent with regards to his creative imagination (and WHAT an imagination THAT is! I’m in awe sometimes at what he comes up with), and he still has his own opinions on a wide variety of subjects.

So although he has accepted this as the reason behind a lot of the mysterious things that have happened but not knowing WHY they’ve happened, he’s still Jake. Intelligent, interesting, opinionated, imaginative, handsome Jake – The Eldest Child, MY Eldest Child. My Jake.

And I couldn’t be more proud of him.

He just happens to also be Autistic.

Living with Luke 97

It’s 5.30am – the am is short for ‘am I awake?’ – and a certain somebody has been awake all night and NOW decides that it will probably be a good time to drop off.

And I can hear him going. As I lay in my bed contemplating getting up – yes, Getting Up – I can hear the gradual slowing down of the constant chatter, the gaps of silence stretching longer as he finally succumbs to sleep and then I hear nothing except the gentle sounds of all of his devices as they play 3 different videos at various levels of volume.

And I know this because I’ve gotten up at least twice during the night to turn down one, two or all three during my few hours of actual sleep.

A typical night just recently has gone like this…

I’ll go to bed at about 11. I tend to drop off faster than a Tottenham Hotspur Premiership title challenge, so usually by about 11.15 I’m asleep. Deep asleep.

1.30am. Get up to turn down (a) device(s). Back to bed. Eventually back to sleep.

1.45am. Get up again to turn down another device. Back to bed.

1.50am. Tiddles gets up to go to the toilet. Takes one device with him so he can use the torch. Carries on watching the video whilst using the torch, however.

3.30am. Get up once again to turn down devices. Back to bed and back to sleep.

4.30am. I wake up – naturally – and lay awake for 50 minutes listening before I doze off for 10 minutes before my alarm goes off, which I turn off immediately, as I don’t want to wake anyone…the irony of this statement is not lost on me…

5.30am. See above.

He’ll then sleep for at least 6 hours, emerging sleepy eyed from his pit at the crack of noon and it’s been like this for about 4 weeks now. No idea why, but Tiddles is now 22 and I know that when I was his age, I didn’t need as much sleep. And clearly he must feel that I don’t need as much sleep now either, so he probably thinks he’s doing some sort of public service, bless him.

TCMH asked me why I seem to be annoyed when I get up to him. But I’m not annoyed at him, I’m more annoyed that he could wake everyone else up, including next doors baby and whilst I can just about function on 4 or 5 hours sleep, TCMH and The Eldest Child can sleep for Britain in the next Olympics and I would rather they weren’t disturbed.

So whilst I’m not entirely happy that Tiddles has turned into some sort of Owl, I’m happy to let him go on doing what he’s doing if that’s what he feels he wants at this moment in time.

I just wish he’d do it quietly…

Living with Luke 96

So…Tiddles has discovered the torch function on his iPod. I say ‘iPod’ as a generic term for his hand held device – it’s actually an old Samsung phone that TCMH gave to him, but as he doesn’t use it for the purpose it was designed for, it’s an iPod.

And he’s had it now for probably a couple of years now, mainly to watch YouTube videos when his iPad is out of charge and he’s using his laptop to put hundreds of pounds of Region 1 DVD’s in his Amazon basket.

He has a busy schedule.

(A side note to this whole Amazon thing. I got Disney+ last month, mainly so The Eldest Child and I could watch ‘The Mandalorian’ – very good. What I didn’t know/appreciate/think about/consider is that the channel would have pretty much EVERY Disney film ever made, including some gems like ‘The Black Hole’, ‘Escape to Witch Mountain’, ‘Candleshoe’, etc. In addition to all of the Herbie films it also has stuff like ‘The Apple Dumpling Gang’. But it also has some lesser known films like ‘The Parent Trap’ and a really odd James Garner film called ‘The Castaway Cowboy’. And how do I know about these rarities, I hear none of you ask? Because Tiddles has found them and watches them over and over and OVER again, especially the last two. So imagine my ‘surprise’ the other day when a DVD turned up from Amazon containing ‘The Castaway Cowboy’. It took me a whole day of seeing the case laying on the sofa to realise that not only was he watching this on Disney+, but he’s also convinced TCMH to BUY it for him for his shelves. He’s NEVER going to watch it, as it’s already ON Disney+, which he watches constantly! But I digress…)

Anyhoo, the other week, the lightbulb blew in the bathroom. Didn’t realise it until the evening – naturally – when somebody, probably Tiddles again, pulled the light cord several times just to make sure it wasn’t on. You know, like you do.

TCMH, realising that Tiddles needed a light for his nighttime marathon toilet sitting, (seriously, he can sometimes sit there for about an hour and a half – it’s a wonder his legs don’t fall off from the lack of circulation when he stands up), showed him how to turn on the torch in his iPod. Brilliant. He was happy with that and the next day we replaced the bulb. All good again.

However…

Since then, Tiddles has started to go to the toilet later and later, and by later, we’re talking 3 or 4am. Luckily for us, we no longer have to get up to clean him up as he can now do it himself without any fuss. UNLUCKILY for us, Torchy the Battery Boy now comes into our room like a mobile Edison Lighthouse, shining his torch directly into my eyes to wake me/us up. Why? So that we can tell him to flush the toilet. which he does all while lighting up the place like The London Eye on New Years Eve.

However…(again)…

Last night, in an effort to get him off of his laptop before bed, TCMH had said to him that he couldn’t have any more DVD’s. Or Free From Cookies. Or Free From Chocolate. She wasn’t angry, but very gentle, saying it in that ‘I’m kidding, but I hope you got the message’ kinda way. And to be fair to him, he didn’t get angry, or shout, or hit out and eventually he complied and turned off the laptop and his light and went to bed. Not to sleep, but at least he was 50% of the way there.

And then, at about half past 3 this morning, Florence Nightingale comes into our room, his Thomas the Tank Engine blanket around his shoulders, shining his bloody bright torch into my eyes again, waking me up from my 90 minute nap, like the Gestapo discovering Anne Frank.

‘Turn it off Luke. What do you want?’ I asked, getting out of bed, my eyes still dazzled by the image of the light burned into my retinas.

‘Go back to bed.’ He told me.

I did as I was asked.

‘Ok, just turn the torch off please.’ I said, which he sort of did by turning the phone around so that the screen light was in my eyes instead.

And then he said to TCMH, ‘Yes cookies, yes DVD’s?’ Obviously this had slowly been playing on his mind the whole night and he decided that now would be the time for some clarification.

‘They’re on their way.’ Replied TCMH, managing to remain conscious briefly before drifting back off to sleep again faster than a door shutting on a Jehovah’s Witness. Tiddles seemed happy with that and turning around he walked back the few steps to his bed and flopped back into it.

To be honest, I don’t know if I was more impressed at the calm way that he asked us, the fact that he used the torch as a means of communication or the way he looked with his TTTE blanket around him. But I do know that this won’t be the end of his late night, torch-wielding disturbances.

Ah well…

Living with Luke 95

Tiddles day.

Depending on what day it is, I’m either woken up at 10.30am by Mummy, or 10am by That Bloke. Either way, I go back to sleep.

11am. I get woken up AGAIN with me being told that my breakfast is still on the side, along with my tablets. ‘No tablets’ is my response, as I take the tablets and drink some water. Lay down again.

11.30am. Eat breakfast. My chocolate milk is now cold, as is my toast. I can see I’m going to have to have a word with the staff about this. The word being ‘soup’, which is what I’m having for lunch at 12pm.

11.45am. If it’s Tuesday or Thursday, then That Bloke comes in with my toothbrush. I put it on the side. He gives it to me again and I bravely put it on the side again. He asks me if I’m having a shower this morning. I reply, ‘No shower’ and then proceed to get up and have a shower.

11.50am. Brush teeth and get in shower. Stand for 10 minutes with the water on the base of my spine – nowhere else – before I decide to wash myself.

12.10pm. Get out of shower. Mummy asks if I’m washing my hair today, to which I respond ‘No wash your hair!’ Before getting back into the shower and washing my hair.

12.20pm. Get out of shower. Dry myself and hang my towel on the floor. Use roll on deodorant for 2 minutes on each armpit and brush my hair. Get dressed. Pick up my very important suitcases with my DVD’s in them and carry them, along with my laptop downstairs to the living room. Turn off whatever was being watched as it’s time for some Peppa Pig, or Ben & Holly’s Little Kingdom, or the end of Free Willy, or the 5 minutes of The Love Bug that I like or The Parent Trap. Whilst this is on, I put my headphones on and watch YouTube videos on my laptop.

1.30pm. Lunch. Soup. More YouTube. I provide commentary to nobody in particular. Loudly.

6pm. I see That Bloke has come home AGAIN. He waves. I wave back. He asks if I’m ok. ‘Nots ok!’ I reply. Standard greeting. He asks ‘How are you?’ To which I reply, ‘Where are you?’ Again, standard. He’s interrupting my shouting, so I shout at him. He goes away. Unfortunately he stays in the house. One of these days he might get the message.

6.15pm Dinner and hiding the TV remote from the others. I can’t understand why they don’t like Peppa Pig? It’s been on all afternoon. I’ve not been watching it so there are parts I’ve forgotten but the others don’t have that excuse. They sit and watch it, mainly because I have the remote control.

7pm. I finally relinquish the remote to mummy who swaps it for a cookie. Sucker! I want another cookie, so I decide to talk and sing throughout the WHOLE evening whilst mummy and That Bloke are watching their own rubbish on TV. For a bit of variety, I punch That Bloke a few times, because he’s decided to sit near me. I also sit in front of him whilst he’s watching TV so he has to keep moving to see the screen.

9pm. Finally get my cookie. Going to have to work on that. Do a bit of shouting before going upstairs for the rest of the night. Put on Simpson’s DVD and leave my favourite scene – it lasts about a minute – on constant repeat. Nobody says anything so they must love it too.

10.30pm. That Bloke comes up and turns off TV. The nerve! I’ve closed the laptop already so I just have my iPod and my iPad running now. He kisses me and says his thing. I take no notice. He goes to bed. I turn up the iPad.

10.35pm. That Bloke comes in again and turns down the iPad. I stare at him as he isn’t wearing any pyjamas. He goes back to bed. I turn the iPad up again.

10.37pm. He comes in AGAIN! He asks me to turn it down, to which I shout ‘Don’t Turn It Down!’ before turning it down. He goes back to bed. I turn it up again, only slightly this time. I don’t want him coming back in with no clothes on.

11pm. Mummy comes in. We have a laugh and a joke, before she turns down the iPad. Jake is laughing at something so I copy his laugh but add a slightly sarcastic tone to my mimicking. I keep everyone entertained by providing a monologue of ALL of my favourite lines from the films and TV that I like, including some songs. Nobody says anything so it must be working.

1am. I realise that after 2 hours everyone must be asleep. – except Jake, who is downstairs watching something of his own – so I decide that I need a poo. Everyone needs to know this so I run noisily the 10 foot to the bathroom and switch on the light. This has the desired effect as I can hear That Bloke has now woken up. I have my iPad, so can provide more running commentary whilst I sit there.

1.50am. Finish up, flush the toilet and run the taps for 5 minutes, whilst I wash myself. Then I dry myself and run the taps again whilst I wash my hands. Dry hands, hang the towel up on the floor, turn light off as noisily as possible and run back to bed.

2am. That Bloke comes in again and turns my iPad down again. I hide under the duvet, so I can’t see him.

2.55am That Bloke comes in once more and turns my iPad down. He goes back to bed and I decide to carry on talking. I’ve been talking straight now for about 3 hours, so I cannot see why I can’t…

3am. I go to sleep. I’ve had a busy day and tomorrow looks like it’s going to be just as busy. Better get some rest.

5.15am. Of all the bloody cheek! That Bloke’s alarm has gone off AGAIN! Every morning at the same time! Doesn’t he know some of us are trying to sleep? I turn my iPad on, bury myself under my teddys and go back to sleep.

5.20am. That Bloke comes in and turns my iPad down.

Living with Luke 94

As a man, it’s abhorrent. As a parent, it’s reprehensible. As a dad to an autistic child, it’s unforgivable.

I totally lost my temper with Tiddles the other day, and now, I absolutely hate myself.

I was taking The Eldest Child to rehearsals – Tiddles has woken up early and as TCMH was out for the day, I thought it would be good to get him out for a little drive. However, somehow, despite my best intentions, we were running slightly late. Tiddles had got up and cleaned his teeth, but had taken his clothes off, wanting to have a shower as he normally does in the morning. But I/we were late so I told him to get dressed. But he wouldn’t, because he wanted a shower and I went completely ballistic at him. I shouted at him, I swore at him and he burst into tears and sat down. I then proceeded to grab him to stand him up and get him ‘fucking dressed!’

This went on for about a minute, during which time he gave me a couple of thumps on my back.

It was the least I deserved.

When my rage had passed, I was disgusted with myself and my behaviour. I’d let him down, I’d let Jake down and I’d let Deb down as well. Not for the first time, I told myself that I’m MEANT to be Superman – at least to him. I don’t know if he was scared, but I know I would’ve been to have seen this from somebody that was supposed to be protecting me.

And I don’t know if he forgave me because as much as I kept saying sorry to him, he kept replying ‘no sorry’, because that’s what he does whenever ANYBODY says sorry to him.

So now I’m stuck with the horrible thought of that moment, and of that memory when I lost my temper with my beautiful boy. And of his face when his poor excuse of a father turned into a raging monster for a couple of very long minutes, that even now, days later, is still playing on my mind.

I’m not looking for absolution. What I did was totally out of order and completely my fault. People will say that I’m only human, but where he is concerned, I have to be so much more than that, and I’m not.

Not a hero. Not an inspiration. Barely human.

Living with Luke 93

It was one of those days that when I look back on it, it makes me think – ‘I want more of those…’

Saturday 31st August 2019 started off pretty much like every other day. TCMH had gone out early and Tiddles had awoken to reply ‘Good Night!’ and ask his usual, ‘Where’s Mum?’ response to my ‘Good morning!’ greeting.

After his breakfast, he stayed in bed for a few more hours before arising at the crack of noon to get himself into the shower, but only after I had said that he needed one if he wanted his soup for lunch.

After washing his body – or his ‘butter’ as he INSISTS on saying when I ask him to wash himself – and his hair, he gets out, dries himself, hangs the towel on the floor, brushes his hair and gets dressed, before descending the staircase like Gloria Swanson in Sunset Boulevard, the unspoken command of ‘Get my soup.’ etched across his face.

Lunch done, he turns on the TV, mutes the sound and puts on various children’s cartoons, immediately leaving the room to go back upstairs, where he stayed until 3.30. Then came back down to watch YouTube videos on his laptop before TCMH made her reappearance at 4pm.

So far, so normal.

This is where it started to get interesting.

Whilst having a cup of tea and a sit down before we all headed out to brother/brother in law/Uncle Steve’s 60th Birthday party in Leigh-on-Sea, both TCMH and I were vaguely aware of something going on upstairs with Tiddles. The usual constant stream of chatter was punctuated with doors opening and closing, things being moved about, dumped, picked up and put away. Or so we thought.

About 4.30ish, Tiddles slowly begins to descend the stairs again. The reason for his slow descent becomes apparent as he comes into view. He’s carrying a red duvet cover – the kind we get out in December for Christmas – and it’s full of…things. We make the usual ‘ho, ho, ho’ noises, jokingly, because, hey! It’s August 31st! He wanders in with the cover/ bag over his shoulder, much like Father Christmas would, but hey! It’s August 31st!

‘Who are you?’ Asks TCMH. I’m thinking he’s going to say the BFG or something, because hey! IT’S AUGUST 31ST!

And sure enough, after he dumps the sack down on the floor, he looks at us and replies,

‘Santa…’ As you do on August 31st.

It’s still there as I write this now. It will probably still be there for the next few weeks before he takes it upstairs again to repack it before bringing it back down again.

So that was that.

Then we went out. And then in the car, he suddenly said,

‘What is your name?’ He wasn’t actually asking, but anybody who has seen ‘Monty Python and The Holy Grail’ may recognise that from the bridge crossing scene. It’s very funny, but I can’t remember all the lines. Luckily The Eldest Child does and proceeded to act out the scene with his brother, including all the cries as the knights get thrown to their deaths. It was brilliant and hilarious and it was so wonderful to hear the two of them ‘playing’ together.

So that was that.

And THEN, not only did he come into the house without any drama, not only did he settle without any problems, he came and found me at one point, tapping me on the shoulder to let me know he was there. A small thing, maybe, but something he has NEVER done before.

But THEN, not only did he come out into the garden when TCMH was singing AND listen, he then walked into the centre of the garden and sang a song from ‘The Wind in the Willows’ on his own, much like he had for his Uncle Dave’s 40th all those years ago.

It was brilliant. Absolutely beautiful. And to have him engage with me, Jake, and his Uncle in the way that he did was just amazing and like I said, something that you just want MORE of.

Saturday August 31st 2019…what a great day!

Living with Luke 92

So…

Last week was that time of year when 3/4 of the family Hannam wombled off for 5 days on their annual trip whilst the remaining 1/4 – The Eldest Child – enjoyed HIS 5 days of Tiddles free living, enabling him to eat what he wanted, guilt free – baked beans, chips, potatoes, chocolate, whatever – safe in the knowledge that he could do so without fear of a certain somebody trying to steal it.

Well, I SAY it’s a holiday for us. In reality, it’s pretty much home life transplanted to a different location. The television is still monopolised by Tiddles, but now instead of endless hours of Peppa Pig, Ben and Holly, Paw Patrol, etc, we have endless hours of DVD’s instead.

Yes, the massive suitcase of DVD’s, packed since Christmas and then lovingly repacked, repacked, repacked again, repacked once more and once again to be sure, finally gets an airing and used. The 100+ (we’ve never counted to be certain, but it has to be at least that many) selection of films and tv shows had taken pride of place in the tiny living room and as I sat there I could see many episodes of Tintin – French and English versions – original Star Wars trilogy and Lois and Clark, The New Adventures of Superman. Of these we watched…none. What we DID ‘watch’ was;

The opening and closing titles of 1970’s tv series Wonder Woman – no actual episodes, just the titles and credits – although it has been noted that one of the guest stars was the delightfully named Fannie Flagg…

The opening and closing titles of the 1950’s tv series The Adventures of Superman ( English and Spanish) starring George Reeves – no relation, not to me anyway. Again no actual episodes.

The opening episode of the 1940’s serial Superman. Well, I say the episode, we’ve seen the first 5 minutes and the last 5 minutes. It’s been ‘great’…

Les aventures des Fievel – part of one episode…in French…On repeat…

And on the very last afternoon we did actually get to watch practically pretty much, almost, but not quite all, and when I say almost, what I mean is the DVD’s chapters – the beginnings of anyway, so we managed to piece together pretty much the whole film of The Rescuers Down Under…we were so riveted that TCMH read an actual book…all the way through…

Phew, always be kind to people…you never know just how many times they’ve had to watch the French versions of…well, anything, whilst on a ‘holiday’.

But this is what our holiday actually is. Home life in a different place.

Although, in between repeated sections of ‘…in your satin tights, fighting for our rights…’ (Wonder Woman), we did all the things that make up the Tiddles list for a holiday –

Steam Train…check.

Beach…check

Holiday home…check.

We even found a swimming pool that he got into without any fuss whatsoever, so check there too.

AND he and I went swimming in the sea a couple of times as well, whilst TCMH bravely watched us from the shore.

Was it a success?

Yes, including all the domination of the TV in the evenings, I think he had a good time all in all.

But, BUT…even with a wetsuit, that North Sea is fucking cold…

Living with Luke 91

So…

It’s been a long time since I started a post with that.

So…

One of my acting heroes died this week. I remember when Steve McQueen died in 1980, although it was a few years before I realised that I identified with him in my acting style – reactive, rather than active. And whilst I would never go so far as to say that I am in any way of the calibre of McQueen – I’m not – neither would I say that I am the ice cool style of another hero of mine, the only Dutch master in my book, Rutger Hauer.

Man, I loved this guy. I realised that I had seen him before I knew of him in a Sylvester Stallone film ‘Nighthawks’. I loved Stallone and this blonde guy was an absolute psycho and when Stallone – disguised in a blonde wig as his wife, turns round as the villain approaches, his reaction mirrored mine. Utter surprise. But the guy was good.

Not brilliant.

Not yet.

But…then Blade Runner was released.

Man, I loved Harrison Ford, cos he was Han Solo AND Indiana Jones. Raiders of the Lost Ark and The Empire Strikes Back. But here was the peroxide blonde psycho Roy Batty who was an absolute nutcase, killing people and wanting more life after a 4 year life span as a robot slave…ramming his head through walls and breaking Harrison’s fingers…and then, AND THEN delivering one of THE greatest short speeches in the history of cinema which utterly and sincerely had you believing that he had SEEN seabeams (whatever they are, but you sooo wanted to see them too!) which was later revealed to have been IMPROVISED. Rutger, you beautiful man.

I was hooked. From then on, I wanted to see anything he was in. Ladyhawke? Awesome check. The Hitcher? Check. Flesh & Blood?? Double check. Even the less than stellar films – Hobo with a Shotgun, anyone? – he was the epitome of a man gliding through the situation with grace and ease.

And now he’s gone.

And I feel terrible.

But what has this got to do with Living with Luke? I hear none of you cry.

It harks back to Blade Runner, I guess. Hauer’s iconic speech, coupled with Edward James Olmos’ line about it being too bad we don’t know how long she (Rachel) has left to live, but then again, who does?

The essence being that nobody, and I do mean nobody, has any idea when Death will come calling.

Tiddles had a major seizure the other day, his first in a couple of years and one we hoped we’d never see again. It knocked us, probably more then we cared to admit. And then my Rutger died and it just seemed like someone was trying to tell me something and then underline it in thick red fucking pen…

You do not know when something will be gone. And you do not know when somebody will be taken from you in the blink of an eye.

The chances we have today may very well be gone tomorrow and if we haven’t at least attempted to take them, then shame on us.

I have personally missed numerous opportunities to tell people that I love them – family, friends and even pets, but that was a long, long time ago. I still tell Tiddles and The Eldest Child that I love them, every night when I go to bed, because if it is the last thing they hear from me, then I want them to know.

But the person I SHOULD be telling that I love them, is me.

As any long term reader of the blogs knows, I Am not a fan of myself. (That was a lot stronger but I edited it.) I am trying to be this ideal symbol of the perfect father, husband, son, employee that I’ve now gotten to the point where I don’t even know if I’m being any type of truthful version of myself.

I have a very negative body image – TCMH calls me Dysmorphic (not being able to see how muscular I am), but of course, she is wrong. So I think I just proved and disproved her point. Russell Brand calls it an ideal in society – when do we think we are ‘enough’? Peak fitness, peak muscularity…

Peak parenthood?

Do we ever get to a point where we think,

‘My god! I am an ACTUAL parent? There is nowhere else for me to go. Bring me my crown…’

No.

And do you know why?

Nope. Neither do I.

Hurts, doesn’t it?

Although, we occasionally, like Narnia, glimpse the promised land, where we are exactly who we need to be.

Not want. Need.

Tiddles needs a ‘strong’ dad.

Am I that person?

No. But what I am is, like Roy Batty, somebody who will desperately hold on to the bitter end to show just how human/empathetic/fatherly I can be to somebody who doesn’t realise just how much he is loved.

He will never know just how much I want to hold onto the little moments when he is just my beautiful, beautiful boy.

But…

‘All these moments, will be lost, like tears in the rain…’