The Whole Tooth

It is half term already and it seems as if the boys have hardly been at school since Easter what with in-service training days, bank holidays and elections. To compensate for the lack of orthodox education we have enrolled the boys in a couple of courses at a local theatre. Today Matty learned to be a stuntman taught by someone who worked on Sherlock Holmes. He came home confidant in his ability to be zapped by Harry Potter or to burst through a wall made of foam blocks. Tomorrow Sam is going to learn African drumming which given his complete lack of rhythm when playing Lego Rockstar on the PS3 might present his teacher with a bit of a problem. Sam has discovered that by hitting any random drum in any random order very very fast can get him a higher score than his equally tuneless brother.

I celebrated half term with a visit to a rather jolly dentist who poked and prodded and declared all well except for a dodgy wisdom tooth which needs x-raying with a view to having something done to it. I have to go back in a couple of weeks. Next time though it will be without Sam being an aeroplane around the surgery.

Right, I'm off to watch dancing dogs on Britain's Got Talent.

We'e All Going To The Zoo Together

On Monday we went to London Zoo and contrary to my pessimistic expectation it didn't rain. In fact the weather was rather nice. We went with our friend C and her son, Matty's friend from school, taking advantage of the way we could all fit into our car because C's husband, an airline pilot, is currently stuck in Washington because of the Icelandic volcano.(Every volcanic aeroplane death cloud has a silver lining, apparently.)

London Zoo has changed since my youth. Gone are the elephants and Polar bears circling confined enclosures, going slowly mad. Instead the emphasis is on conservation with Gorilla Kingdoms and Rain Forest experiences. I particularly enjoyed the Night Life experience, which was not a disco but a chance to see all sorts of nocturnal creatures knocking about naturally.

I am slightly suspicious that many of the terrariums in the reptile house were empty despite signs saying they contained a Taiwanese Spitting snake, a Borneo Bouncing lizard or a Completely Invisible Sleeping newt. Occasionally I did spot a snake but it might quite easily have been a rubber one from the zoo souvenir shop. Telling me how cunningly they used camouflage didn't fool me.

Sam, having been to see the film How To Train Your Dragon was keen to see the Komodo dragons. He was disappointed to find they neither flew nor breathed fire but was slightly mollified when I told him how they could kill a buffalo. Matty found it difficult to choose a favourite animal, being torn between the giraffes and “those catty things with spots near the tigers.”

It was a good final day of the school holidays.

Until next time. . .

The Easter Break

Okay, I admit it, I'm a bad blogger. I have failed to post anything new for what seems like an age. My excuse? It's the Easter school holidays and I have two ebullient boys to keep entertained. Oh, and it's been (mostly) sunny so I've been sitting in the garden reading and trying not to get sunburn.

Last week we went for a picnic in Greenwich park to meet up with my aunt Megan. We picked up my nephews, the boys cousins Oscar and Ollie, on the way and arrived in time for lunch. Obviously the glorious weather we had been enjoying took a break and we ate our Scotch eggs and buffet style chicken pies in a light drizzle that slowly progressed to a torrential downpour. Fortunately I had my ultra-stylish wheelchair raincoat with me which Matty says makes me look like a toddler in a pushchair. At least I was dry. We took refuge in the fabulous Royal Observatory, enjoying the historical setting and the state of the art interactive displays before watching a show in the Planetarium.

To help the boys burn off some energy we enrolled them both in an intensive trampoline course for the last week. Matty, in particular, has shown an aptitude for the sport and attained his grade 5 certificate. We have also replaced our broken tiny garden trampoline with a slightly bigger unbroken one. Even as I write Sam has just bounced off it to swing on the washing line in an attempt to create his own theme park ride. We will now need to buy a new rotary dryer.

It was also this week that our washing machine chose to break down, making horrible grinding noises and refusing to perform its raison d'etre. We emptied our piggy bank and ordered a new one. It was then that our friends Catherine and Stuart told us that they had inherited a virtually brand new washing machine and it was sitting idle in their shed and would we like it. Would we ever. Stuart even came round and plumbed it in. This saved us a small fortune and we are very grateful. Now, has anyone got a fridge/freezer?

Now as the holiday draws to a close, the boys have an inset day tomorrow so have one extra day off school. We are taking them to London zoo so you can expect it to rain.

Until next time.

A Mile In Their Shoes

On the 21st March Polly, Sam and Matty ran the Sports Relief Mile along the Embankment in London. It was something of a last minute affair, Polly only having signed up a couple of days before hand, so she only committed to raising £50 for the charity. They all ran the mile with ease, circumnavigating Eddie Izzard (who was running yet another full marathon), and completing it in about 10 minutes. (Polly insists they could have run it faster but there were too many baby buggies in the way.)

Thank you to everyone who sponsored the three of them, we really appreciate your kindness, generosity and support The money goes to support important projects here in the UK and in some of the poorest countries in the world. You can find out more at http://www.sportrelief.com/ and if you would like to retrospectively sponsor Polly and the boys you can at http://www.mysportrelief.com/dealboysrunning . I am delighted to announce that the total raised so far by the three of them is £380. . . so far.

Until next time.

Laser Death Pizza Extravaganza

I have been to hell and it is in Croydon. All right, perhaps I exaggerate, but not a lot. On Saturday we had Matty's 10th birthday party which was held at the Laser Quest franchise in the Colonnades on The Purley Way. From the outside the building looks like a rather bland office block but inside it is designed to resemble a Mississippi steamboat, I kid you not. The steamboat illusion does not pass deep inspection and is soon revealed to be mostly a front for an extremely noisy amusement arcade replete with the latest shoot-'em-up games called things like Zombie Killer 4 and Death Jungle Zone 3. Each game comes with at least one machine gun and absolutely no volume control. Interspersed with the death dealing mayhem machines were driving games that gave very little consideration to the highway code called Death Racer VII or Mission Road Kill X or such like. Also dotted around the Stygian hall were several non-working pool and air-hockey tables serving primarily as surfaces for teenagers to lounge against and as anti-wheelchair obstacles. The thermostat was set to 'boil blood' level but they economised by having the lighting set at a level that required an infra-red night scope to see more than a few murky feet. Along one side of the arcade was the Laser Quest zone where groups of identical looking pre-teens loitered whilst awaiting their turn to dispense laser justice upon each other.

Matty and his micro-army of 9 laser armed friends vanished into the kill-zone to enact Armageddon while I hunted vainly for a cup of coffee. Eventually I took refuge in the party room we had reserved and was at last able to have a conversation that did not require shouting over the death throes of machine gunned zombies. After an hour or so Matty's army retired from the battlefield to devour hot-dogs and relive successful ambushes. Oh to be 10 again.

On Monday it was Matty's actual birthday and we took him (and Sam, obviously) out for tea. You put your taste-buds in the lap of the gods when you let a 10-year-old choose the restaurant you dine in, so it was with a sense of 'it could have been worse' that I trundled into Pizza Hut. I am not a huge fan of Pizza Hut so I was pleasantly surprised to find on the menu some relatively interesting looking Tuscani style pizzas. I settled on the Pollo Portobello with the “thinnest, lightest, crispiest pizza base” and “recipes inspired from the heart of Italy.” Perfecto! Unfortunately Matty had been swayed by the advertising that induced him to try a pizza surrounded by “a ring of 28 individual doughy bites bursting with cheese.“ Such a divine culinary experience only comes with pizzas the size of truck tyres and so he pleaded with me to share a vast meat-feast deep pan pizza. I closed my menu with a small sigh and said that I'd be delighted to share. It was his birthday after all and considering the years of pleasure he has given me it was a tiny sacrifice. As he sat, grinning from ear to ear, chewing on peperoni flavoured stringy bits, he thanked us for taking him out to 'a posh restaurant'. Is it any wonder I love him?

PS - Only have the ring of 28 individual doughy bites bursting with cheese if you enjoy cheesy flavoured chewing gum.

Until next time.

A Week In The Life

We are now a week into 2010 and this is my first post of the new decade. It has been an interesting week, here are some of the highlights.

On new years eve only one carer arrived. Polly had taken the boys to the early part of a party and I was home alone happily catching up with the second part of Day of the Triffids. Kolapo wrangled me into bed alone.

New years day – only one carer arrived. Polly helped Kolapo get me up. There appears to have been some confusion over on which days care was cancelled. This had arisen because the decision had to be taken weeks in advance. Polly was in her run up to Christmas where she dashes from nursery to nursery loaded down with puppets, dressed as a fairy and can barely remember what day of the week it is, let alone decide what care requirements will be needed over the festive period. The care agency seemed to have no clue either but lack the excuse of having to entertain hundreds of children with only the aid of Stella the Star puppet.

On January 2nd we had friends round for dinner. This was great fun. We had cancelled the carers for the evening which was just as well because no one went home until 1.30am. The only problem was that then Polly had to get me to bed alone and we were both very tired.

January 4th, Monday, the last day of the holidays before the boys go back to school and Kolapo arrives in the morning alone. Polly gets a phone call from the agency saying several of their staff are off sick. They make the assumption that Polly will bail them out and act as the second carer. Polly rebels and points out she is not a member of their staff and, besides, she has plans for the morning which do not include lugging me about. She then gathers the boys and takes them over to a friends. I am left in bed until 12.30pm when an irate Carlotte arrives all the way from Lambeth. There is much muttering in French and African dialects about the organizational abilities of the agency management. It also occurs to me that had the agency made fewer assumptions about Polly's willingness to drop everything to become their unpaid emergency backup worker and had asked her nicely rather than just assuming her availability then things would have run a lot more smoothly.

In the afternoon, after I had had a cup of coffee and a slice of toast, we took the boys for a last day of the holidays trip to the cinema to see Avatar. Fabulous. Rush to see it. The plot is blockbuster typical but despite the eco-save the planet-civilization bad/tree hugging natives good-climatic battle scene finale storyline the film is absolutely beautiful to watch. The alien planet Pandora is stunningly realised. We saw it in 3D which literally adds a new dimension to it but I understand that even in 2D the SFX are spectacular. It's the first time I've seen a truly convincing alien world. The film is quite long (161 minutes) but I was immersed totally and so were the boys. (Polly fell asleep for a little while but that is because she was in a warm dark place and had nothing to do with the film.) The film making is genuinely ground breaking and makes me excited about the future of the technology. Go and see it. Now.

January 5th – the boys go back to school.

January 6th – today. 3cm of snow has fallen in our area and so naturally the school is closed. Matty is only slightly aggrieved that he had an appointment at the dental hospital today and would have been off school anyway. Both boys are watching the forecasts keenly in hopeful anticipation of Siberian conditions for the rest of the month.

So, as you can see, 2010 has not ushered in a new era of blissful tranquillity for the writer of this blog. Mind you, if my life was just one long peaceful wheelchair ride you probably wouldn't care enough to read about it. I hope you all enjoyed Christmas and have had a happy new year.

Until next time.

That Was The Year That Was

As we slide down the razor blade of life (as Tom Lehrer had it) into 2010 I am compelled by convention to look back on 2009 with consideration.

I had a run of deterioration in my Muscular Dystrophy which caused me some concern early in the year but a new super-duper wheelchair has gone some way towards compensating for that. I lost the ability to raise my arm in such a way as to be able to eat meals. A devise called a Neater arm has greatly helped with that problem. Frankly it was a bit scary at the time but I've got a new consultant at Kings who actually knows something about FSH MD and managed to reassure me that my condition was not spiralling out of control, just reaching a tipping point. The new wheelchair combined with a decent air mattress has meant I've been able to cut down on about 90% of the painkillers I was on. I've decided to postpone my demise for another year.

Sam has had his kidneys scanned and they have been deemed satisfactory. Matty is now wearing glasses, something he is perfectly happy with and he is now perfecting his geek-chic look. Polly has now qualified as a fully fledged junior Clown Doctor. She works once or twice a week at Great Ormond Street Hospital and the Royal Marsden. The work is sometimes traumatic but always deeply rewarding. For reasons I don't fully understand she has decided to learn how to play the ukulele. And since Matty is intending to learn the guitar I dread to think what our home will sound like next year.

A highlight of the year was when we received our new car, a Volkswagon Caddy. It is significantly longer than our old van which means we all have a bit more space. We only have this fabulous new vehicle because of the generosity of my brother and sister. Best of all, it arrived in time for our holiday in Wales.

Since I last blogged we have attended the deadly Christingle service where hundreds of children wave oranges with lit candles stuck in them around. This year both Matty and Sam took part in the Nativity play. Sam was a fearful shepherd. He was given the direction to look scared when the angel of the Lord appeared. While the other shepherds stood rooted to the spot Sam 'acted'. You would have thought that the angel Gabriel had appeared in the guise of Freddy Krueger. Matty meanwhile was cast as Joseph. He managed, with 9 year-old aplomb, to walk Mary to Bethlehem in a manner that showed loving, husbandly devotion but at the same time subtly conveyed the message that, in real life, he and the girl were not actually an 'item'.

Christmas day morning was spent at home in a frenzy of present opening and included a visit from Nanny, Pam, Polly's mum. In the afternoon we travelled to Dulwich and my brother Simon's new house. To get into the house I had to cross the gravel driveway in which I got stuck. The tread of my wheels became embedded with tiny stones which had to be individually removed before I dared move onto the newly fitted real wood flooring. We had a great time as my entire family gathered, including my sister Helena and her family all the way from Texas. Fortunately Simon and Jaspreet's house is huge so 6 boy cousins and 9 adults had plenty of space. In fact, had we wanted to, I think we could have played 5-a-side football in the living room.

So, as 2009 comes to an end I'd like to thank everybody who has kept me alive this year and to everyone who reads this blog. I appreciate your company and your comments. I hope you will stay with me for the new decade. I'm certainly intending to stay with you. Happy new year.

Until next time...

Blackout - Call 999

I feel sufficiently recovered to tell you about the events of Sunday night. Those of a nervous or sensitive disposition should skip this post and find something nice to do like decorating a pine tree.

Sunday evening had been very pleasant. Polly had performed at her last party of the year, danced the 'I've finished! I've finished!' dance, and we had celebrated with a rare Indian take-a-way. We don't eat take-a-way very often because oily food makes my chest bubbly, but the last party of the year is always a momentous occasion and must be marked accordingly.

By the time the carers arrived I was feeling a little bubbly but was not unduly concerned because I would soon be in bed on the BiPap ventilator. And so it proved. While Polly watched Cranford, a BBC costumed melodrama on TV, I was retired to bed to happily read Bernard Knight's Fear in the Forest. It felt a bit like breathing soup but the BiPap forced air in and I relaxed into it knowing that eventually the mucus in my lungs would be broken down into a kind of froth that could be relatively easily coughed up. The process was taking time but I was engrossed in twelfth century Exeter's problems and so focussed on those rather than on the crackly noises coming from chest.

And then there was a power cut.

The air being pushed into my lungs stopped mid-breath. The room was plunged into darkness and the alarm on the ventilator started its piercing shriek. The rational part of my brain assured me I wouldn't suffocate but the more primitive part knew this was nonsense and that death was imminent. I tried to suck in air through the now useless mask but the froth in my lungs gave the illusion I was drowning. The suddenness of having the breath snatched from me caused me to briefly panic and I had to fight to calm down. All this took only a few seconds. I then heard Polly rushing up the hallway and her voice telling me it as all going to be okay.

My bed is an electric profiling bed that can be raised or lowered, tilted or reclined to help me change position or sit up. The operative word here is electric. During a power cut it is just a bed. Polly came into the bedroom knowing she had to sit me up because breathing whilst lying down is difficult for me. Using leverage and brute force she raised me to a sitting position and removed the mask. She then rushed off to find a torch and then the emergency battery pack for the BiPap. It took a few moments but soon the ventilator was working again and the mask was back on. Air rushed back into my now aching lungs but the mucus had shifted and part of my lungs were blocked off. Polly helped me lie down again.

Other problems were arising. Our heating had gone off and as snow was falling heavily outside the temperature was already plummeting. My electric blanket was now just a rapidly cooling thin sheet. In addition, my electrically powered air mattress was deflating beneath me. Still, at least I could breathe. Polly looked at the control panel on the BiPap. It told her that the emergency backup battery was only a quarter charged. I had, perhaps, an hour and a half of breathing time. I couldn't get out of bed and transfer to the wheelchair because the hoist is, you've guessed it, electrically powered.

Polly rang the power company and explained the situation. The outage was extremely local, affecting only a few houses around us. Our upstairs neighbour had no power but the flat above her did. The house next door was in darkness but across the road Christmas lights shone. The customer service manager at EDF was full of sympathy at my plight but regretfully informed Polly that they would not be sending an engineer out before morning. What, Polly asked, was I supposed to do when the backup battery ran out and I started turning blue? Call an ambulance, she was told. Polly dialled 999.

Within a short while an ambulance duly arrived complete with two green clad paramedic type women who quickly grasped the situation but were at a loss at what to do. They could take me to hospital where there was at least power and warmth but transferring me there would require another ambulance team to safely move me without the use of the hoist. Even incapacitated as I was this seemed a bit too much. The weather outside was treacherous and the emergency services were already stretched. The ambulance woman called the power company herself and put a flea in their ear.

By now our neighbours were anxiously hovering, alerted by the presence of the ambulance, and offering any help that they could. Then Polly had a brainwave. We could run an extension lead down from the top flat where there was electricity. Fortunately our next door neighbour was able to rummage in his company van and produce an industrial length cable which could be trailed three floors down and through our flat into our bedroom. Within a few minutes we had limited power again. My mattress began to re-inflate and my electric blanket began to warm up again. Crisis over. Or so we thought.

Polly said goodbye to the ambulance crew and apologised for having called them out. Oh no, they said cheerfully, it made a pleasant change from picking up drunk people who had slipped on the ice. They departed to fill in forms about the incident.

I'm not exactly sure what caused what happened next. I think the sudden changes in pressure, position and temperature had caused the sticky and frothy mucus in my rather abused lungs to foam into my mouth where due to the forced breaths from the ventilator I swallowed it and great mouthfuls of pressurised air. The contents of my stomach rebelled and a grim combination of semi-digested curry, mucus and medication came up in to my mouth. This would be nasty under any circumstances, but remember, my ventilator was forcing me to take regular breaths regardless of whether I was being sick at the time. I was in real danger of choking.

Polly took one look at me and came as close to panicking as she ever has with me. She made a dash for the front door and waved down the departing ambulance. Moments later the two ambulance women were back looking down at me anxiously. “Get some suction,” said one of them, and I suddenly felt like I was in an episode of Casualty. One of the crew admitted frankly they were a bit out of their depth. They took my sats (96% on the BiPap) and my blood pressure (slightly raised) and my temperature (normal) but since they didn't know what my baseline was they weren't sure how useful the information was. Still, it gave them something to do.

I kept being sick and they kept telling me not to breathe it into my lungs. It is generally agreed among medical folk that aspiration pneumonia is something to try and avoid – so I did. It wasn't easy but, as you will have gathered, I somehow managed. When there was nothing left in my stomach I finally stopped being sick. Everyone breathed a sigh of relief. Well, everyone except me; I sort of bubbled.

Once they were satisfied I wasn't going to expire the ambulance crew left to pick up more drunken ice-skaters. I drifted off to sleep leaving Polly to recover from a near nervous breakdown. “God, you're a lot of work,” I heard her mutter. Good job she loves me. The power came back on a couple of hours later. Apparently EDF relented and sent out an engineer. I woke up a few times during the night with a raging thirst but Polly would only let me sip a few drops of water for fear of me drowning or something.

I would like to thank the ambulance crew who were a reassuring presence and very patient. I would also like to thank our neighbours who rallied round and made a real difference. I am a fortunate fellow indeed to have so many people around me who are prepared to endure snow and freezing conditions to help.

This will probably be the last post before Christmas. This afternoon we are taking the boys to see Father Christmas at a local grotto and last night we took them to see Thumblina at the Charles Cryer Theatre in the village. After the events of Sunday night I'm grateful to be well enough to enjoy these seasonal experiences with them.

Merry Christmas to everyone kind enough to spend time reading this blog. I truly appreciate it. I'll try and squeeze in another post before the new year.

Seasons greetings. Until next time...

Fair's Fair

Last Saturday was the school Christmas fair and it was all hands to the deck. A school fair is the Burn (Polly's maiden name) family's natural habitat. Despite being swamped in clown doctoring and Polly Mixturing, Polly somehow managed to find herself agreeing to design, make and wear a Polly's Pockets crinoline hooped dress covered in pockets for children to pick presents from. Of course, it was a huge amount of work, involving a temperamental sewing machine, some hula-hoops and yards of material, and quite a few late late nights, but the final result was thoroughly satisfactory.

Meanwhile, Pam, Polly's mum had agreed to run and stock Nanny's Stall. She had been collecting toys, ornaments and bits and bobs for months, as well as knitting cardigans at a prodigious rate. It took two car trips to transport the accumulated stock to the school.

On the day Polly and Pam disappeared off to the school early leaving me to sort out the boys. It turned out that it is easier to corral custard than get two boys ready to go out. You say, “we're leaving in five minutes. Have you got your shoes on?” They hear, “we're leaving in five minutes. You have time to start a computer game, build something large out of Lego, and have a pillow fight whilst bouncing on the bed.” It is a miracle to me that Polly ever gets them to school of a morning. Eventually they announced they were ready to go. Sam appeared dressed in a t-shirt and a pair of shorts. I sent him back to find some jeans and a warm top. He was indignant but reluctantly went back to change. He reappeared wearing a cardigan that had last fitted him when he was three. I sent him back to change again. Sam, with a perfectly straight face, denied that he had any other clothes.

Many minutes later we were on our way, walking across the local leisure centre's car park, when Sam announced he had forgotten to bring his purse which contained all his spending money. Back we went.

By the time we arrived at the school the fair was well under way. Polly was surrounded by a horde of small children handing over their 50p coins and rummaging in her many pockets to find presents. Pam was doing a roaring trade on Nanny's Stall. Hundreds of people were milling around. I retreated to a corner and hid.

My wheelchair allowed me to rise up and survey the scene. Occasionally the crowds would part to allow Sam, wielding a puff of pink candy-floss like a sticky magic sword, to pass through. Matty would appear periodically to beg more money to invest in trying to win the fastest Mario Kart lap on the Wii stall.

We're not sure yet how much was raised for the school at this years fair, but if the efforts of my family are anything to go by, it should be a lot.

Until next time.

When Polly Gets Flu

Polly has had flu. Now whether this was the infamous Swine flu or your common or garden flu flu we are not sure. In fact no one is sure, not the NHS helpline, our doctor or indeed, the several other people who have suffered similarly.

Now I love Polly. She is wonderful in so many ways I do not have time to list them all. She (and by extrapolation the children) is absolutely the best thing ever to have happened to me. She is kind, clever, caring and funny. But she is rubbish at being sick. Firstly she believes she is completely indispensable to the running of the universe and that the whole of creation will fall apart if she takes any time off. If she is enforced to go to bed for a while she gets annoyed if the world manages to continue orbiting the sun without her personal assistance and guidance. If, however, the universe somehow manages to struggle on without her, she gets incredibly annoyed if it doesn't tidy the living room in exactly the way she would have done.

Polly has to feel really ill before she relinquishes control of the cosmos. On this occasion she was ill enough to go to bed during the day which is something she begrudges deeply because she 'should be doing other things'. 'Doing other things' means doing all the things that mummies do, children's entertainers do, clown doctors do and rulers of the universe do.

Polly being ill is nothing compared to Polly feeling a little bit better. Polly very reluctantly cancelled a gig at the Royal Marsden but only because flu, cancer, chemotherapy and sick children are a volatile combination. However, Polly feeling a little bit better essentially means Polly catching up with all the things she feels she hasn't done as well as continuing to do all the things she would normally be doing and perhaps a few other things in case anyone suspects her of idleness. Lesser mortals, such as myself, are left wallowing in her wake as she bakes cakes for cub fund-raisers, manages my sisters house restoration, entertains at 4 year-old boys parties, makes Christmas cards and oversees the middle-east peace process. Suddenly she will complain of being tired and look at me as if it is entirely my fault.

At night, my usually delightful bedtime companion becomes an irritable, tetchy, scratchy sleepless nightmare. I cannot move, breathe or mumble sweet nothings without bringing about the kind of reaction that is usually a precursor to all out war. Every creek, every variation in light, every child's nightmare, is my fault. Will no one let her sleep? Don't I realise that she is sick?

The problem for Polly, and no doubt mothers everywhere, is that just because she is ill does not mean that life stops to compensate and allow her time to catch up. I do my best to help make things run smoothly but honestly, is it too much to ask that we don't run out of proper coffee? I've had to drink instant. Yes, when Polly is sick we all suffer. Thank God it's only woman flu.

Until next time.

In A Glass Box

Last night Polly, the light of my life, had been invited to perform a couple of pieces at a local arts centre as part of an evening of monologues called A Moment To Mutter. Being a thoroughly supportive husband, and appreciative of the high quality of cake served at this establishment, I agreed to accompany my beloved to the show. And since we hadn't organised a babysitter we gave the boys a late pass and took them with us. We even remembered, at the last minute, to cancel the carers.

The Lantern Arts Centre is located within part of the building that is the monolithic Raynes Park Methodist Church in south London. Over the years it has evolved from an enthusiastically amateur underfunded enterprise into a slickly professional underfunded enterprise. On Friday nights they put on, or invite artists to perform, shows in their Café Studio, a smallish theatre on the 3rd floor. After much fund-raising and lobbying for grants, a few years ago they installed a lift (elevator) which finally made the centre fully accessible to all. The management at the Lantern Arts Centre are committed to inclusivity as is testified to by the huge range of shows and services they put on and provide in and around the local community.

I have ridden the lift to the Café Studio many times in the past, both as a performer and as a member of the audience, I don't have a particular fear of lifts, and this one is essentially a glass box with minimal claustrophobic potential, but even so, my heart rate goes up a little as the surprisingly fragile seeming glass door closes behind me and an electric motor starts to whine. We had sent the boys haring up the flights of stairs that created the stairwell through which the lift rose and Polly and I had entered the lift and closed the glass door behind us. Polly pushed down on the large UP button and held it down and the electric motor engaged. The tone of the electric motor was not that of a contented piece of machinery going about it's business of perpendicularly raising passengers forty or more feet into the air in a safe, reliable manner, but was rather that of a straining put-upon cantankerous piece of groaning mechanical misery. Some eighteen inches into our alarmingly juddery assent Polly removed her hand from the aforementioned UP button and we came to a halt.

People peered over banisters at the new exhibits and I wondered if they were expecting some kind of show. Then it came to me, I could be a mime trapped in a glass box! Polly pushed hopefully at the UP and DOWN buttons but to no avail. Matty and Sam looked down from on high and asked if we were stuck. We assured them it was only for a minute and their angelic little faces turned from mild anxiety to one of sensing an opportunity of freedom, so they headed for the cakes to bat their eyelashes at whoever had the misfortune to be in charge.

Meanwhile the inestimable Georgie Talbot and her husband John, joint artistic directors of the arts centre, leapt into action. John opened a panel high above us and he and colleagues turned some ratchety thing that very slowly lowered us back down to the ground floor.

Various people fiddled with the lift mechanism, trying to reset the wretched thing, but to no avail. Much to Georgie's consternation nothing worked and defeat was admitted. Her fury was heightened by the fact that the centre spends a fortune maintaining the thing and that it had been inspected only days previously. The show, however, had to go on. Fortunately, at that moment, my friend Bob arrived, and within seconds had come up with an action plan. He and I would retire to a local tavern for the duration.

By now the audience was arriving so Bob and I hung around to chat with those we knew, many of whom nodded sagely at the lift and regaled me with stories of the times it had broken down with them in it. Bob, who hates lifts and only ever goes in one with me when we go to the cinema because I can't reach buttons (and even then sort of clings spread to the wall with apparent nonchalance in case the floor drops away) swore he'd never set foot in the thing.

It was also a chance to catch up briefly with Susie, who among her many responsibilities at LAC was tonight manning the box office. Susie, a talented writer, who co-ordinates the centre's children's and youth Theatre Clubs, endures the agonizing condition Lupus, and we have worked together occasionally over the last decade or so, with Susie in particular refusing to compromise because of disability. She had written and was performing two monologues and so, eventually, left Bob and me in charge of the box office while she went to prepare. I later learned that Matty thought her 'growing up' monologue was wonderful.

Once Bob and I had escaped box office duty we made off around the corner for a drink and chat. It occurred to me Polly might want to escape during the interval and get the boys home and to bed so we didn't stay long. As it turned out her second piece was still to come so Bob nipped upstairs to video her performance for me.

Not exactly the evening I was anticipating, but not bad.

Until next time...

A Matter Of Faith

As a consequence of going Israeli dancing last weekend Polly and I found ourselves addressing the congregation of Holy Trinity, Wallington, this Sunday. We had been chatting to Stephen, the vicar, between expositions on dance in Leviticus, and had inadvertently reminded him of our existence. He asked us if we would be prepared to be interviewed during the service about our faith. Polly said yes, totally ignoring the little strangling noises issuing from me and the frantic shaking of my head that was going on behind the vicar's back. With malicious glee she committed us. Only later did she realise that she too would have to speak.

Sunday arrived and we arrived at the church as a family only a few minutes late. Before I had even had time to warm myself next to one of the iron radiators we were being invited to the front to address the congregation.

I have been in this situation many times in the past but not for a few years. A hundred or more faces watched me expectantly. I flicked the controller on my wheelchair and levitated into the air. That was better, I could now see and be seen. It also killed a few seconds. Polly took the microphone and spoke with her usual wit and assurance about her faith and how it enabled her to cope with some of the extremely harrowing situations she faces with her work as a clown doctor. All well and good but it was upping the bar and I was acutely aware that anything I said was going to sound trite or glib or worse, hypocritical.

All to soon Polly finished her bit and Stephen turned his vicarly attention to me. After giving the congregation a brief run down on my writing and theatre background and doing a great job plugging this blog he asked me what my faith meant to me. Good question. It was one of those situations when you open your mouth to talk and haven't got a clue what's going to come out.

If you've been reading this blog for any length of time you will be aware that if Jesus wants me for a sunbeam then he has grossly misjudged the weather. I admitted that I had 'issues' with God, which seemed to strike a chord with a significant number of those listening judging from the wry chuckle that followed. I went on to talk a little about the many good things in my life and left it to them to decide whether I attributed those to my faith or not. I did say that my faith has formed the backdrop to my life for the last 35 years or so, which however I feel about that sometimes, is absolutely true.

As ever when I raise matters of faith on this blog I am acutely aware that I am disappointing or disillusioning many of my readers, especially my many Christian friends who would, no doubt, prefer something more unequivocal from me. Equally I know for a fact that a huge number of my readers are atheist and hold no truck whatsoever with anything pertaining to faith. They say you can't please all of the people all of the time, but it would be nice to please a few people some of the time. So, for the tiny number of readers who lack certainty in matters of personal faith, this post is for you. As you dangle over the precipice of uncertainty you can at least be comforted by the knowledge that somewhere nearby I am hanging on grimly with you. Not a great deal of comfort, I realise, but at least we're not alone.

Until next time.

Managing The Bathroom

I'm not sure how this story will translate for international readers but it made me laugh.

Polly and I have undertaken to project manage the renovation of my sister and brother-in-law's house in Surrey. Helena and Andrew have been living and working abroad for the last few years and the house has been on the rental market. It needs a lot of work doing to it and so various quotes are being acquired. Fortunately Helena was in the country last weekend and was able to go through the various aspects of the job with us in person. She decided, rather than repair the bathrooms, she would have new ones fitted, so asked us to find out how much this would cost. I asked her if she wanted us to refit the downstairs cloakroom while we were doing the bathrooms because a third lavatory wouldn't cost much more than two.
“You might might be able to get a three for two deal or something like that,“ I observed.

“Surely, if you get buy one lavatory and get one free,” quipped Polly, “that special offer would be a BOGOF!“

As I said, it made me laugh.

The New Car Cometh

Well the new car has arrived, diamond black and the length of a cruise ship. We were expecting it to arrive sometime on Thursday afternoon but the driver delivering it had set off from the Wirral at 4.00am and arrived at about a quarter to breakfast. This meant we were able to take the gleaming new vehicle out for a spin for lunch.

The Caddy has an automatic transmission but Polly has only ever driven a manual so our first drive was accompanied by little shrieks of panic as she tried to stamp on the missing clutch and pointlessly reach for the gear-stick. Within minutes though she was driving like a pro and we all began to relax. We picked up Pam, Polly's mum, and headed down the A3 to Painshill where we sat outside in the sunshine and had some lunch and Polly stopped shaking.

The Caddy is much longer than the old Kangoo so I feel as if I am sitting a long way back from the driver. Polly suggests that we put up a grill behind the rear passenger seats and I can bark and drool from my position in the back. The only thing I find truly annoying about our glorious new Deal-Mobile is that there is no way to play an Ipod or MP3 player through the car stereo which for a car design so new seems ridiculous to me. A trip to Halfords appears inevitable. On one of the many plus sides, having side doors to allow the children in and out without them clambering all over the fronts seats is such an improvement on the old van that I find myself wondering why we didn't take an acetylene torch and cut our own. We also have air-conditioning so in the height of summer it is marginally warmer in our car than outside.

My friend PJ has been reading me reviews of the Volkswagon Caddy Maxi which agree the vehicle is good value for money but point out that because it is a van conversion, we passengers are essentially the human equivalent of plumbing equipment or frozen pizza. Well, if nothing else, we are comfortable, air-conditioned, cargo. Other reviewers besmirch Caddy owners as being people whose fecundity outstrips their budget. Uncomfortably close to the truth in our case.

When I was a child it was my ultimate vehicular ambition to have a car with electric windows. At the time the only cars that had such sophistication were luxury cars like Rolls-Royce's and Bentley's. Now I can bellow down the length of the vehicle and Polly can push a button and miraculously windows slide effortlessly down. I feel like a shouty millionaire.

We can not thank my family enough for their immense generosity in enabling us to possess our diamond black, wheelchair accessible vehicle. I always knew letting my little brother beat me at Subuteo when I was 8 would pay off in the end. Thank you.

Party Animal

I am so OLD. Well obviously I am, I had my birthday last week. Thank you for all the best wishes received and for the occasional expression of surprise that I've made it this far. My family combined, in case you are wondering, to give me an Ipod Touch, 32 gigabytes of pure gadgety loveliness. But it is not my physical age that concerns me, but rather my level of mental decrepitude.

Last night we went to a party. A school friend of Polly, “I haven't got a thing to wear”, was celebrating her 40th birthday, and had hired the events room at a rugby club in deepest Surrey. We didn't set off until nearly 8 o'clock, and Sam kept whispering to me, conspiratorially, that it was past his bedtime and that he hoped mummy wouldn't notice. Both boys were thrilled to find, upon our arrival, that there was an abundance of children to play with, and all thoughts of bedtime vanished like the drinks at the free bar.

What struck me first was the sheer volume of the music. The function room was dotted with large round tables, down one wall was a finger buffet and in a corner was the bar. In the opposite corner, before which was an area cleared for dancing, was a DJ with an array of decks, speakers and flashing lights. The only thing missing was a volume control.

This is where I come across as all fuddy-duddy. The room was full of people sat, or standing, in groups, huddled together, shouting into each others ears. Any conversation conducted more than six inches from ear to mouth involved advanced mime and sign language gesticulation. After a few minutes bellowing at Elaine, our hostess, and with Polly, I found myself sitting, nursing half a pint of cider, in a kind of audio-isolation.

I amused myself by watching the series of photographs being presented one after another on a TV monitor affixed to one wall. Countless pictures of Elaine's childhood and family cycled by, intermittently punctuated by photographs of her with friends. Every now and then a shriek went up as someone recognized themselves (during a brief hiatus in the cacophonous music, obviously). I spotted Polly a few times, a distinctly unpromising pre-pubescent teen in horizontal stripes, and wondered at the processes that had transformed her into the vibrant, beautiful woman, dancing with our boys to Wham and a medley of Abba songs.

Judging by the pictures, one of the defining elements of growing up in the eighties was hair. Big hair. The array of perms, bouffant and otherwise, was dazzling. There was a particularly unflattering photo of Polly with an angled fringe. She punched me on the arm when I asked if it was from her Hitler period.

At one stage in the evening, when Polly had taken the boys to the loo, someone came to talk to me. I think his name was Colin but he was competing with 'Billie-Jean' at the time. (Apparently the kid is not his son.) I think Colin was asking me how I knew Elaine but he might equally have been asking for my opinion of global warming.

I realised, as a bleary-eyed Sam came and curled up on my lap, that I am not naturally a party animal. My cider had lasted all night and as much as I enjoy 80's popular music my ears were starting to bleed. Let's face it, I realised as I stroked my son's hair, I'm a grumpy old git.

Why I Cried On Sunday

You would think that being severely disabled would be enough, but, oh no, on top of FSH MD you can still get all the coughs, colds, infections and allergies that everybody else get to endure. Normally that's just life but occasionally circumstances combine to present you with a very particular situation as occurred on Sunday.

Friends Stewart and Catherine had asked Polly and me to be godparents to their youngest son, Elliot. Wonderful, we were thrilled to be asked and the service was held at our church, Holy Trinity in Wallington on Sunday.

Holy Trinity is one of those Victorian edifices that stands, complete with steeple, on the approach to Wallington and has served the local community for generations. In recent years the multi-purpose, all singing all dancing Trinity Centre has been artfully integrated into the fabric of the structure providing a hall and function rooms as well a kitchen to further serve the people of Wallington. On Sunday a couple of hundred people gathered for the morning service, supplemented by friends and family of Stewart and Cath because the Christening would form part of the service, and sang hymns and worship songs and generally behaved in a typically Anglicany manner.

Stewart and I had placed ramps in position to enable me to get up on to the raised dais. When the time came for the Christening I ascended the ramps and took up my godfatherly position with Polly and the others in the party. We promised to raise Elliot in the Christian faith and on cue he began to cry. Stephen, the vicar, took Elliot to the font and splashed him in an appropriately holy way. Elliot was so surprised he forgot to cry and spent the rest of the ceremony tracking rivulets of water as they dripped from his head.

The problem started for me when the Christening was over and I had to negotiate the ramp again. There is something in the air within the church that makes my eyes run. I don't know if it is the dust, the polish or pollen from the flower displays. It may well be a combination of all three; I don't know. What I do know is that by the end of the ceremony my eyes were streaming so much so that I could hardly see. The ramp was a complete watery blur as I gingerly crept towards it trying to align my wheels so as to slot into each of the 8 inch wide channels. 200 blurry faces watched patiently as I edged forward, tears streaming down my cheeks, hoping I had remembered exactly where each channel was placed. I was so busy trying to line up with the ramp that, when I was finally descending it, I barely remembered to brace myself in time to prevent myself from being pivoted forward and out of the wheelchair in an undignified heap onto the transept in front of the pews. By the time I was back in my place I could barely see anything nor hear anything other than the pounding of my heart.

When the next hymn started I made my way down the aisle, negotiating fellow wheelchair users and baby buggies, and out into the clearer air of the Trinity Centre. The sweet, elderly lady on door duty looked at me aghast. To her I looked like a weeping member of the congregation, fleeing the service in tears. She must have presumed that I was overwhelmed by the awesome responsibility of my godfatherly duties, or so moved by singing about mountains being laid low or what have you, that I was having an emotional and spiritual breakdown. She immediately placed a hand on my shoulder and told me everything would be all right. I assured her it would be and she reluctantly let me go without counselling.

Later, after the service, several people asked me if I was okay and remarked that I looked rather red and flushed. I'm sure I did, though whether from an allergic reaction or embarrassment I couldn't tell you.

The rest of the day was lovely. We had a buffet lunch together and Elliot, slightly bemused, is now presumably safe in terms of his immortal soul until such times that he is old enough to take responsibility for it himself. Maybe, when he is older, he will be told how his godfather was moved to tears on the occasion of his baptism. Be happy, Elliot, God bless.

A Grand Day Out

On Monday the boys had an Inset day and so had an extra day off school. The weather had been uncharacteristically good and so it seemed a pity to waste it hanging around at home doing nothing in particular. Polly and I decided on a grand day out. We piled the boys into the van and set off.

“Where are we going?” asked Sam.

“Somewhere where you have to behave very well, keep very quiet and you absolutely must not smile,” I told him.

“Not smile? Why not?”

“Because they don't like it.” Sam looked doubtful.

“Is it a museum?” chipped in Matty untangling himself from his ipod headphones.

“We're going to the Shed and Fence Panelling Museum,” explained Polly. “ But remember, you mustn't touch the exhibits, however tempting they are.” Matty and Sam exchanged glances.

“Why are we going there?” asked Matt not unreasonably.

“There's nothing like the smell of creosote,” I assured him. At this point we turned into a huge car park and started trawling the lanes for a parking space less than an hours trek from the entrance where a surprisingly large number of fence panel enthusiasts queued for admittance.

It took only a few more moments before the boys faces broke into excited grins. “Chessington World of Adventure!” shrieked Matty. “Can we go to Beano Land?”

I won't write a review of our day at the theme park, there are plenty out on the web if you want to know which rides are worth queuing for. Since I am unable to transfer from my wheelchair to the rides my enjoyment is vicarious. It is Polly who gets to accompany the boys on various thrilling experiences. This wasn't so bad when all they wanted to do was go on rides inspired by the Teletubbies or Postman Pat but nowadays Matty, in particular, wants to go on rides with names like Transylvania and Ramases Revenge. Polly, who gets travel sick on merry-go-rounds, spends a lot of time looking faintly green and in need of regular cups of tea. While she and Matthew hurtle round some flimsy looking scaffolding poles experiencing 4 g inverted turns at 60 miles per hour I get to take Sam to the petting zoo. We both look enviously at each other.

We did all get to enjoy the Sea Life Centre equally together. Oh, and a peculiar 3d haunted house type experience. I loved watching the boys enjoy themselves, dashing from queue to queue, and being remarkably agreeable with each others choice of ride or experience. I did find the uneven pathways and occasional steep hill exhausting and have to admit to being grateful for the odd chance to sit in the sun, reading my book, while my family were catapulted up, down and around.

Towards the end of of our day we found some rides the boys could both queue for and go on on by themselves while their mother and I enjoyed tea and coffee and tried to blot out the infuriatingly incessant jolly music that blasted from hidden speakers all around. Chessington is a fun place to visit but I would go demented if I was there too often. We both agreed that the next time we go to a place like this we will take a teenager with us to do the queuing and the scary rides with the boys. I doubt there will be a shortage of volunteers.

Eventually, as I carried an exhausted Samuel, cuddled up on my lap, out of the park and back to the van he asked sleepily when we were going to see the sheds and fence panels.

A Rite Of Passage

Thank you to everyone who commented via the blog, email, IM, phone or, indeed, in person on the post about my dad. He would have appreciated knowing he would be remembered so fondly by so many.

Obviously the best thing to do with children is keep them locked up safe, wrapped in bubble-wrap and away from sharp pointy objects and strangers wanting to show them puppies or offering them sweeties. Even when they are at their most obstreperously demanding or cantankerously unreasonable you want your children to be safe. You keep them away from fast flowing rivers and you hold their hand when crossing busy roads, however much they protest and try to wriggle free, you refuse to listen to their demands for independence, explaining that you have a responsibility to them that you take seriously even if they are 23 and getting married next month.

Today Matty (now aged 9) took a big step on the long road to independence. He went to the local shop all on his own. Polly and I have been having an ongoing 'discussion' about how much freedom the boys should have. The back of our garden opens via an electrically operated gate on to a paved area in a cul-de-sac where a number of local children play, particularly a semi-feral young girl who regularly calls to ask if Matty will play with her. Despite the area being in a cul-de-sac a number of cars do use the road and we have been reluctant to let our boys play out there unsupervised. However, as the summer draws on, and the little neighbour persists, I have significantly weakened in my resolve to deny Matty the opportunity to play and have recently started allowing him to go out, much to Polly's tight-lipped concern. My reasoning is that he has to have a certain degree of street-smarts to survive in life and, frankly, if he can't survive in our quiet neighbourhood, with us in shouting distance, he won't be able to survive anywhere without an adult standing over him at all times ready to swoop in and sweep him away to a place of safety. Polly has visions of cars hurtling around the corner, driven by drunken car thieves, intent on ploughing down local children to score points in some video inspired game of Deathwish. Matty has been out, played and returned safely, even on occasion accompanied by little brother Sam. I felt it was time to move on to the next step.

We have talked about it on and off for a while. We have a newsagents and little general store just around the corner. The only problem is that you have to cross a narrow but very busy road that acts as a rat run for drivers who want to avoid the village. Fortunately they have recently sited a new zebra crossing a little way up this road. I felt this made it an ideal first trip to the shop alone type store. Eventually, and with many reservations, Polly finally agreed.

Matty was commissioned to go and buy a packet of crisps and a bar of chocolate. Clutching a £5 note he set off. Unbeknownst to him he was trailed by Polly, in her best SAS urban soldier mode, hiding behind lampposts and parked vehicles, all the way there. She hovered anxiously when he entered the shop and ducked behind a wheelie-bin when he came out grinning and carrying a plastic bag. A passing dog walker gave her a strange look but she mouthed an explanation to him and when he was satisfied she posed no threat to the little boy she was watching he went on his way. Polly dashed home and Matty found her casually leaning on a rail in the garden when he returned waving his spoils.

He was so thrilled and pleased with himself. Polly, on the other hand needed a strong cup of tea. The last time I looked she was on the computer Googling tracking devices she can sew into his clothes.

I Miss My Dad

It was a Sunday evening in April 2000, our three week old son was fitfully asleep in his mother's arms and Polly and I were watching the final episode of the first series of Monarch of the Glen, one of those interchangeable 'drama by numbers' that populate the Sunday night television schedule. Archie had declared his love for some pretty Scottish lass and Hector, played by the always good value for money Richard Briars, was causing comedic curmudgeonly confusion as the show built to the series finale cliffhanger. The phone rang, it was my mum, who in a sad, composed voice, told me my father had just died. On the television, in Glenbogle, Scotland, there was a fireworks party.

I haven't written an awful lot about my father in this blog, not for any nefarious reason, and not because it hurts to remember him. The pain and shock of those first few days and weeks have long since past to be replaced by a poignant background gentle sadness that ebbs and flows, waxes and wanes, but only reaches high tides on the occasion of significant anniversaries, such as Christmas and birthdays and as now, the ninth anniversary of his death. Most of the time he hovers happily in the background of my conciousness, a benign and gentle spirit. His death was sudden and relatively unexpected. Only a week or so previously he had come to visit us to see his new grandson, Matthew. But the Muscular Dystrophy he was afflicted with had deteriorated to the extent that each day had become a wearying trial and, when I spoke to him, as I often did, I could sense a depression circling, like a carrion bird, high above him. “Don't ever get old, son,” he said. “Don't ever get get old.” He was sixty-five. He died of heart failure. His name was Roger Harry Deal.

I didn't get to know Roger myself until 1961 where upon we immediately adopted the relationship we would maintain for the rest of his life. I was his son and he was my dad. He never became my best friend, my mate, or my buddy. He was always my dad. From the first day of my life to the last day of his I could not have wished for a better father. I am sure that my brothers and sister feel similarly. He always tried to be fair and ensure that each of us got similar chances and opportunities throughout our childhood. He never resorted to favouritism however much we tried to explain why the other three did not deserve equal treatment. He was remarkably patient with us. On more than one occasion he was summoned from an important meeting to answer the telephone from one of us requesting his permission to substitute the tin of baked beans Mum had left out for our lunch with a tin of the more exciting Alphabetti Spaghetti. Another favourite telephone call he loved to recount was the one that started "don't worry dad, the Fire Brigade has gone now…"

Anyone who only knew him in the last few years of his life might have been unaware of the many things he was justifiably proud of doing in times past. Born in 1934 he grew up in Wallington, south of London, with his sister Judith and his parents Lois and Gordon. Much of his childhood was spent living through the last world war. He particularly enjoyed collecting scrap metal for the war effort and often reminded us that he'd had to sleep in a shelter down the garden.

As a young man Dad cycled all over Europe. I once found a photo of him standing stark naked about to dive into an alpine lake. When I questioned him about it he came over all wistful and said, "Son, there's nothing like swimming nude in glacial cold waters." And this from a man who moaned if you left the front door open for a second longer than necessary.

In his teens Roger was a Queen's Scout and he maintained an affection for the Scouting movement into adulthood. For many years he ran the 21st Wansdyke cub pack in the local primary school hall. My brother Mark reminded me of Bum football, a game Dad invented. It was just like proper football except that you had to slide around on your bottom, which reduced the chances of injury and exhausted 30 to 40 energetic small boys into the bargain. It was a matter of no small amount of pride to me that I achieved whole armfuls of merit badges. The uncharitable amongst my wolf cub friends put this down to being Akela's son. Dad's innate fairness would never have let that influence him. The truth was simple. I was just a little boy who wanted to please his father.

Another of Dad's claim to local fame over the same period was at the Wansdyke Primary School Bonfire night celebrations. My father would stroll out across the playing field, his distinctive gait easily recognised, and the crowd would hush as he lit the rockets and then cheer as they whooshed into the sky, signifying the start of the display. He was the Rocket Man. Dad loved being centre of attention but was not so keen when irate gardeners held him responsible for aiming his gunpowder propelled missiles so that they'd land on local residents greenhouses, smashing countless panes of glass.

If you had only known Dad when he was confined to a wheelchair you may have been surprised to learn that he used to ride a motorbike. As children we would take it in turns to dash to the red letter box around the corner and wait to be given a ride back home on the little Honda 50. The bike eventually went after he was knocked off it one to many times. Indeed, one of my earliest memories of him is him lying on the settee with his leg in white plaster after he came off worst in a collision with a Danish bacon lorry.

All of Rogers working life was spent in the service of the law. He worked for a variety of solicitors such as Shepherd Norcott & Co, Mead King & Co and Wansboroughs before finding a long-term home in the legal department of Avon County Council. One part of his work involved doing conveyancing work for the police. This involved going out in to the countryside and looking at radio masts. I asked him whether he could tell anything by just looking at a 200 foot high metal tower. He confessed that he couldn't but that he always went on the trips because he enjoyed the ride in a police car.

Dad worked at Avon for twenty years and became a well known and easily identified figure regularly seen coasting along corridors of county power in his electric wheelchair. In 1994 his service was recognised when he was invited to Buckingham Palace for one of the Queen's Garden Parties. Although it has to be said that when it came to an option between sitting in the baking sun on the off chance of meeting Her Majesty and going and getting a cup of tea the choice was not a difficult one.

After retirement he took up voluntary work at Bridge Farm Infant and Junior School where he listened to children practice their reading. One can only imagine the impression he made on the Offsted School inspectors if they ever heard him threaten to flay some little child alive or have them keel hauled if they didn't sit quietly. The children found this hysterical because by this stage dad was so disabled they had to hold up their own books and turn the pages for him. They appear to have loved him. Dad was also a governor of the infant school.

Throughout our childhood family holidays seemed to involve driving vast distances to various windswept parts of the country. Not for the Deals were cushy beach holidays and warm sunshine. Armed only with a Thermosflask and a Tupperware container we'd set out visit various exposed lengths of Hadrian's wall. And let me reassure you, this was in an era long before softy visitor centres had been built. Even today I can't look at an expanse of moor land with out mentally inserting windscreen wipers and a tax disc in the corner.

All this, of course, changed the moment my brothers, sister and I left home. Suddenly Mum was able to persuade Dad to jet off around the world with her. Together they visited Australia, Thailand and much of America and Europe. In 1990 Simon, Helena and I went with them to California. It was a fabulous holiday but I missed the Tupperware.

On one occasion Dad was in Turkey with Mum and his sister Judith. My mother and Judith had gone in to a mosque that was inaccessible to Dad because of the steps. Dad told me that he'd settled down in his wheelchair along side the mosque and dozed off in the shade. He awoke with a start to find local people dropping money into his sun hat. "No, no," he cried. "I'm not begging. I don't need your money, I'm English! English!"

Dad was never more English than when he was abroad. Helena tells of a time she and Mum were in Madrid with him. One evening they dined early in a sea food restaurant which was virtually empty when they entered. A huge platter of shelled and betentacled creatures was placed before them which Dad enthusiastically crunched his way through. (Helena maintains that one of the delicacies was little turtle's feet.) Dad's bonhomie so won over the staff that they plied him with generous glasses of free liqueurs. When the time came to exit the by now crowded restaurant Dad was weaved through the tables in his wheelchair proclaiming that Gibraltar was British and that he was a Cointreau lout.

It was amazing that Dad would eat exotic fare whilst abroad. At home he was deeply suspicious of all food he considered 'ethnic'. This, it should emphasised, had nothing whatsoever to do with race or creed but whether a meal contained the hated lentils. We would frequently phone home to be told in a morose voice that "your mother's cooking me something 'ethnic' for tea." We had visions of Mum serving Dad cus-cus with peppers and a mung bean salad. Usually it turned out to be spaghetti bolognaise.

Dad was something of a Luddite when it came to technology. He never learned to set the video and there are dozens of tapes with a half hour programme two thirds of the way through because he and Mum were going out for the evening. Helena and Andrew offered to buy him the equipment needed to go on line digitally via the television. They asked him if he'd prefer e-mails and the information super highway or an Easter egg. An Easter egg Dad replied. His pleasures were simple. Single malt whiskies and Brookside on the telly.

But his greatest pleasure was his family. We're proud to say that he was proud of us. He loved the fact that we loved him. He took pride in our achievements and would tell anyone who would listen what we all were up to. We take some comfort in that the last few months of his life gave him many things to delight over. Simon and Jaspreet regularly visited him with his grandsons Oliver and Oscar. He was proud at the fact that Mark is researching a doctorate in Disability Issues (which he subsequently gained). Helena and Andrew had just returned from living abroad and so he once again got to meet the then baby Alexander. His last Christmas was made especially exciting by the controversy and success of a song I had helped write going to number one in the charts. It was the first time he'd watched Top Of The Pops in decades. He was even happier when Polly and I had our baby Matthew Tudor and shared more than anyone our relief that Matthew had not inherited the Muscular Dystrophy that has affected our family in so many ways over the years. It will be one of the great sadnesses of our futures that our children will grow up not knowing their Grandfather. But they will of course hear all the stories. I also find it sad that he died before two of his grandchildren, Theo and Sam, were born.

I once asked what was the best thing he'd ever done. He replied "I married your Mother." Roger was married to our mother, Dilys, for nearly 40 years. I cannot adequately tell you how much he loved her. Oh, he would moan and grumble that she was studying for her degree or at the Disabled Living Centre or in London on the Arthritis Care Help Line or off saving the world. But hardly a phone call went by with out him extolling her virtues in some way or telling us how wonderful she was. I don't wish to give the impression that theirs was some kind of Mills and Boon romance. Hardly. Theirs was a marriage forged in the cut and thrust of family life. They both worked, had four children at the local comprehensive school, and half the family was increasingly disabled, but, thanks to our mother and father, we never once experienced instability or insecurity. I know that I speak for my brothers and sister when I say that if our children grow up loving us half as much as we loved Mum and Dad then we will have been good parents.

Nine years on I still hardly go a day without some passing thought of him. Things happen that I would have enjoyed sharing with him, or would have sought his advice over. He, more than anyone, could have related to recent changes in my condition.

Many different people will remember my father in many ways. He was a quiet man with a huge personality and a sandpaper dry wit. I don't suppose there's ever a really good time to die. But we, his family, take a little comfort in that there were no family schisms left unhealed. Dad knew we were proud of him and I know he was proud of us. I suppose that is at least one definition of a successful and happy relationship.

Roger Harry Deal, 1934 -2000.

One Year On

Well I made it. I've kept this blog going for a whole year. 166 posts, well over 90,000 words, over 2,600 individual visitors and a whole heap of comments. And that's just here on the 'mother-site' so to speak. I've lost track of all the Disaboom readers, let alone those who follow it on Facebook. All told I reckon around 2,000 people read these words every month.

I've enjoyed writing these posts over the last year and have, like most bloggers, particularly enjoyed and appreciated any comments I've received. It's nice to know there are people out in the blogosphere actually reading this stuff and who are prepared to take time to write and provide feedback. So thank you if you have been one of them.

I set out writing How To Be An Inspiration because I wanted to chart the ups and downs of day to day life living with FSH Muscular Dystrophy whilst at the same time living with (and indeed within) a family. Looking back a lot has happened and a lot has changed over the course of the last year. I had a quick glance at the first post and was transported back to a time of chickenpox and marathons, but also a time when I was transferring myself from bed to wheelchair and from wheelchair to toilet. I had dexterity enough to manipulate a stylus to write this blog with a handwriting recognition programme rather than picking it out one letter at a time on an on-screen keyboard as I am now. I had a whole different team of carers who only came in the morning rather than morning, nights, some lunchtimes, some teatimes, some afternoons and sometimes all through the night. In terms of the Muscular Dystrophy it's been a year of rapid deterioration, one of the worse I can remember. Fortunately I don't have to define my life solely in terms of my disability. Polly and the boys give me both purpose and happiness and are the true measure of how my life is going.

Today is Easter Sunday and I'm writing this whilst watching Jonny Depp as Willy Wonka on TV with Sam. Matty is happily playing on the computer and Polly is pottering in the kitchen. All in all it is a very normal family scene.