All posts by ianeditz

Grand Diy SOS

If only life was Grand DIY SOS Designs?

I watched that programme on TV the other night where a team of building professionals rally round, giving their time for free, to help make a families home suitable for their profoundly disabled child’s needs. You know the one, there is always a tear jerking back story full of incredible heartbreak that they have overcome and it’s a real emotional rollercoaster as they battle against the clock to get all the work done.

I wiped away the tears as I heard how after watching their twins battle life and death and spending over 18 months in and out of hospital, the family finally settled back into normal life only for the company the dad was working for to go bust owing him a small fortune and how grandma moved closer to help them bring up their kids, only for her to die suddenly and unexpectedly in her sleep. Through all this heartache, they stripped down their house that was totally unsuitable for their disabled son’s needs ready for the builders to move in but start dates came and went in the wind. They were trapped by circumstances to struggle along until Nick Knowles and his team came along to save the day.

When I say I watched it, what I meant was I have lived it. All apart from the bit where the house was adapted to suit their needs, because as any carer can tell you, for most families bringing up disabled children, life is simply not like DIY SOS.

We live with our three children in the middle of the idyllic village of Bromley Cross. When there isn’t a pandemic, it is ideally suited for the shops, the station, great local schools and The Nook and Cranny and has just been voted in the top 10 places to bring up a family in the UK

However, our home being over 4 floors, from a cellar to the attic, it is far from an ideal place to bring up a young boy with Cerebral Palsy*. 

Moving house is a fantasy as we would ideally need a 4 bedroom bungalow but any house like that that comes to market around here, is quickly snapped up by cash buyers to be bulldozed and replaced with several smaller boutique residences.

The government offers some help to adapt homes like ours in the form of a Disable Facilities Grant. We applied for a DFG and were accepted however as our front door is 1.1M off the ground, we discovered that by the time we install a lift to get Thomas and his wheelchair into our house, the grant would be all but spent and yet our lives inside these 4 walls would not be improved one bit.

Thomas cannot walk and he cannot self toilet. He has complex changing needs and is beginning to get very heavy. As he will only continue to grow, we had a radical idea to spend the DFG more wisely by reconfiguring the cellar to be the heart of the home alongside Thomas’s hygiene suite and bedroom. Luckily our front garden is just long enough to build the required ramped access for his wheelchair, negating the need for a lift.

Ultimately it could even become a self contained flat for Thomas once our other children have flown the nest and we move back upstairs. We have to consider that we may be looking after him for the rest of our lives but are hopeful he will reach a degree of independence.

After much playing around on Google Sketchup and cutting up of graph paper, we decided to employ an architect.The first architect was initially enthused by our ideas to gain ramped access into the cellar but then he got confused and irrational when he convinced himself that far from liberating Thomas, we were entombing him. He walked away from the project

The second architect began by doing it all for free. He had a son with special educational needs and empathised with our predicament however just as we prepared to submit for planning. He disappeared off the face of the Earth.

The third architect we employed was my former scout master. We had shared a taxi back from a local pub and persuaded him to get involved. Plans were drawn up and passed by planning then a setback, you get used to these, the DFG expired.

So we reapplied for the DFG only to discover they didn’t like our plans one bit. What you often discover with bureaucrats is that they are exceptionally good at misunderstanding how you live your life tallied alongside a reluctance to deal with people who don’t tick a convenient box.

To cut a long story short though, and it is a long story, after much horse trading, we finally got our DFG re-accepted with some stringent conditions. The next stage was tendering, as even though in theory the money was ours to spend adapting our home for Thomas’s needs, Bolton at Home who managed the grant needed to ensure we don’t blow it all on fast living.

Not that the grant even touches the sides. Even with the VAT exemption for disabled equipment, our estimate for the adaptations comes in at around £120,000. Money we have had to fundraise

We asked three builders to tender but only one completed the process. Facing Hobsons choice, we committed to using him with July 2019 scheduled to be the start date. It came and went. Our neighbours were not mad keen on our plans to move a drain and install some new manholes, so we subtly redesigned the scheme to accommodate their requests and improve vehicular wheelchair access at the front. Our architect thought that this constituted a non material amendment but advised that it was wise to pass it by planning to keep on their sweet side. Not surprisingly, at the eleventh hour they rejected this move insisting on another full submission which they guaranteed they would pass. To cut another very long story short, they disappointed us by reneging and rejecting it. Our architect submitted a compromise proposal but whilst we waited to discover whether it would pass, our builder walked off the project.

So nearly 5 years since we started this process, our house is still unadapted for Thomas’s needs. We did eventually get full planning and we had a new builder who should have started work in January 2021 but he unexpectedly inflated his quote and we parted company. Our fingers are crossed that one day it might finally happen but every architectural draft, survey, structural engineers report, planning application, building control submission costs us a fee and so far we are nearly £4000 down with nothing to show but a set of plans.

And therein lies the crux of the problem, our house isn’t a standard box and our needs cannot be met with a bit of breeze block bolted onto the back. It isn’t a conventional DFG but then neither are Thomas’s needs. Every child is unique and we believe our scheme is the best we can come up with given our circumstances.

By liaising with professionals we have designed an innovative solution to an intangible problem, meeting Thomas’s needs whilst keeping us in the heart of our community and support network. Through clever use of technology to maximise the available space, we hope to future proof our lives and give Thomas independence.

For us this is a once in a lifetime project and neither of us are experienced project managers so we are reliant on experts to get the adaptations done. Trying to tackle it ourselves would lead to the kind of situation that would get Kevin McCloud to issue a sentence structured around the words “I think they are making a big mistake” as he delivered his PTC to a camera on a jib. In another twist regular viewers of Grand Designs will recognise, we were turned down by Santander’s underwriting team for our much needed additional borrowing. Though thankfully on appeal, they have agreed to lend us a maximum of £30K.

We have been lucky that the charity Sullivans Heroes have taken us on. They support families like us whose adaptations go beyond the scope of a DFG. Without their help we would have given up a long time ago. They have helped us write to 101 trusts, foundations and charities to tell our story and so far we have had 5 successful bids, 8 pendings and 65 rejections.

Thomas is now eight. Given the drama of his birth, it is a milestone we never thought we would see. With nearly £10K still left to find for his wheelchair lift, and our backs beginning to give, does anyone have Nick Knowles phone number please?

If only life was as simple as DIY SOS 🙁

*Cerebral Palsy, Cortical Visual Impairment, Epilepsy, Undiagnosed Sensory Processing Disorders etc

2018 My Year in failure :-(

From September last year until January this year, I spent nearly 5 months editing then on-lining the 100K Drop.

A daytime game show  for Channel 4.

When this finished I had a 6 week hiatus but instead of maudlin, I wrote a to-do list for the year and spent the next few weeks planing to complete everything on it. This is how my year has gone so far.


Apply for a Job at the Farm Manchester

The industry papers and social media reported that The Farm, the biggest post production company in the country, were planning to open a Manchester branch. I set about applying for a job that didn’t yet exist, Senior Online editor. I met with a CV doctor who made sense of my career on paper and tapped up my old acquaintance Aidan Farrell for an “In” for me to send it too alongside my covering letter. In July I met with the managers of The Farm Manchester to be interviewed for the position.

This Friday outside my edit suite at Dock10, leaving drinks were held for the lucky candidate. It wasn’t me 🙁

Two Cups of Tea

My good friend and mercurial talent Chris Heath had created the successful podcast Two Cups of Tea where he interviews elderly people about their interesting lives. I wanted to go along and film him in action but before I could ask him, he asked me 🙂

We cut what we both though was a wonderful taster tape and with an infinite supply of elderly people who have lived interesting lives, we both thought it would be nailed on to be a daytime ratings smash.

It’s been touted to all the usual suspects but so far it remains un-commissioned 🙁

Spinning with Rainy

A friend of a friend runs a craft magazine and we connected to make a pilot about “Spinning” to pitch to the craft channel. It was made for zero money as a proof of concept and we were both very happy with the results. Rainy then pitched it to the craft channel.

They rejected it and took time out to comment on the editing which they described as “amateur” 🙁


In 2017 at Netley, me and my daughter Lilly came 20th in the Miracle Dinghy National sailing championships. In an effort to improve, we decided to attend as many Open events as possible, winning the travelers trophy for the 2nd year running.Travelers


This year at Bala we came 21st 🙁


I am the Vice commodore of Delph Sailing club in Bolton.

In July I organised a Try Sailing event to attract new members. I promoted it heavily on Facebook and in the local area and the event was a sell-out.

Try Sailing

In just over 3 hours, we took out nearly 70 people for a sail, a rate of 1 person every 3 minutes according to a club statistician. It felt like a tremendous success and we ran out of memberships forms such was the enthusiasm of our guests.

The only person to join was the father of an existing member 🙁

Trouble Brewing

2017 saw the inaugural Bolton Film Festival. Being local I submitted my film “James Brown, Nessie Hunter” in the North West Documentary category. It was rejected on copyright violations but the judges held it in such high regard that I was invited as a guest to the closing night.

Buoyed by this experience I set off to make a highly personal film about Bolton which would contain music specially recorded for the film in order to avoid the humiliation of a repeated copyright violation strike. 9 months of hard slog later, I submitted it.

It’s been rejected by the judging jury for the 2018 festival 🙁


#Pantsdown4equality – This is an addendum as it wasn’t on my list but..

My son Thomas, alongside thousands of others, requires a changing bed and a hoist to facilitate his changing needs.

I  have become a vociferous campaigner for these facilities and when Sarah Brisdion persuaded the Bath Store on Oxford Street to host a day of campaigning I managed to blag some free train tickets from Martin Green so that I could get involved and film it.

Many campaigners didn’t like the tone of my film and refused to get behind and promote it. I am now a bit of a pariah on the campaigning scene 🙁

Post script – The 100K Drop

The viewers loved the 100K Drop and Channel 4 have commissioned a new series to be made 🙂

I’ve not been asked back to edit it 🙁

I am currently having second thought about doing my piano exam…


As you all know, 42 is the Answer to the Ultimate Question of Life, The Universe, and Everything but by the time you read this, if indeed you ever do, I will no longer be 42

Full Version.Copy

On the eve of my 42nd birthday I destroying The Sumners cake trolley.  It was an act that defined my life but then I bought a Tilley hat and moved on.

As I reflect on my 42nd year on this planet, it was a strange year as I had very little work. Unfortunately in this modern world, what we do for a living can sometimes be the only thing that defines us?

When I say I did very little work, I really mean it. Endless months of waiting for the phone to ring but amongst this void I managed to cut a pilot for the best series that never got commissioned, I graded my first ever commercial which resulted in an unpleasant experience of extortion. I was involved in a failed coup, helped revamp Dragons Den and graded my first ever feature film before finishing the year in familiar territory, a cutting room at ITV.

I will be celebrating my 43rd birthday by on-lining a film for my dear friend Chris Malone who has spend most of the year filming a man, filming the Queen.

As a man who has managed to miss most of life by working, my 42nd year will be defined by the voids and how I filled them. I have had a remarkable number of new experiences in the past 12 months.

My top 10 highlights of my 42nd year are as follows, in no particular order.

1. I destroyed the cake trolley. If you don’t get it don’t worry you are in good company.

2. I was interviewed on local radio station, Bolton FM about my legendary cake trolley explosion. This led to the some not entirely complimentary fan mail but what is history but a fable agreed upon?

3. From local radio to national radio, I was spring-boarded onto the Nicky Campbell show where I bemoaned the fact that the Labour party needed to offer the nation hope. No fan mail followed

4. From local radio to national TV. Not quite sure what happened here other than I guess BBC bookers are lazy and go for the easy option?

5. I displayed my art work in a pop up art gallery. Regardless of my fan mail, I rather suspect this confirmed my place as an artist.

Pop up

6. I went to my inaugural theatre workshop and ended up selling out Bolton’s Octagon theatre in a hit musical about the futility of war. Quite some achievement for a virgin Thespian and a theme that resonates loudly with the shenanigans in Syria.

7. I won my first ever sporting trophy when I helmed my Miracle sailing dinghy to first place in Delph Sailing clubs novice series. My crew promptly retired because “I am either scared or I am bored and that is no basis for a hobby.”


Speaking of Delph, I became a director of the sailing club and having largely managed to avoid the joy of meetings all my working life, I discovered how it can take upwards of8 months to discuss changing a door handle…

8. A failed quest for Dutch wine resulted in one of the drunkenness experiences of my life. This in turn led to a forming new friendships with The Van den Bergs and The Gandhis. Almost worth the entry fee?

9. The Bongo. There is much debate about who may have been the 5th Beatle but there is no debate about who is the 7th member of our family. The Bongo is the backbone behind a life of adventure and free spirit. What a magnificent vehicle to have transported me through my 42nd year. From helping me help feed the homeless, it doubles as a holiday home, a mobile office and a makeshift dormitory.


It also became notorious when I filled in for Northern rails ineptitude and enacted a random act of kindness. I love my Bongo.

10. In despatches, I also became did a soup kitchen run, raised money for charity, had my super slowmo gimbal footage shown on North West Tonight , experienced mindfulness at Manchester art gallery, became an RTS Judge and finally became a Patron of the Arts!



Adventures aside, apart from having very little money, there is one shadow which cast itself large over my 42nd year . The death of Jo’s mother Ann.

Ann was not just the mother to my wife, she was a  friend and keen participant in one of my most enjoyable hobbies, bitching.  Ann could help create whole ludicrous back stories to people actions and personalities, I enjoyed her company and miss her. Her death broke Joanne and shook me out of a world I was creating based on my self pity.  Being strong for my wife as she dealt with losing her best friend was one of the most important roles I have ever had to play.  I am still learning my lines and am prone to occasional fluffs.


When we got the phone call, I was busy working on the worst thing I had ever worked on in my life. Battling life and death with the twins was always a journey built on a foundation of hope. The foundations of that hope was Ann’s successful fight against cancer 10 years previously. With her death, our foundations were eroded. The under pinning is ongoing.

So that was my 42nd year. A compendium of experiences and possibly the most memorable year of my life.  The twins continue to blossom and Thomas despite his considerable challenges, brings more joy to my than I could ever transcribe in prose.

As my 43rd year brings me nearer the mid point of my life than I comfortable with, I plan to grasp it by the horns and ride it for all its worth. Thank you to everyone who helped share 42 and make it one of the greatest years of my life. I love you all x

Paradise Lost

Like most married couple with children, weekends in our house are largely a series of repetitive routines. On Sundays I normally look after the kids in the morning whilst Jo gets some school work done. then in the afternoons, between sausage butties and a Sunday roast, I go sailing

Today with the weather being awful, I abandoned all thoughts of sailing and used  my energy to join Jo in wading through the clutter that seems to prevent us from ever having a tidy bedroom. We were ruthless. Bag after bag of clothes left our wardrobe and just as we were congratulation ourselves on a job well done, something hit me that I wasn’t expecting. From the back of her wardrobe Jo pulled out a PVC nurses uniform and tossed it into the cast offs with a throw away line along the lines “I don’t need this any more”.



I was simultaneously heart broken and starry eyed in reminiscence.

On a practical level, getting rid of it made perfect sense. It was an abandoned item of clothing that no longer fitted Jo but at a sentimental level, it felt as though part of our lives was being discarded.

When me and Jo first met, we had a lot of sex. It was frequent, sometimes kinky and always an awful lot of fun. I remember going into Ann Summers in the Trafford centre and buying this dress with Jo.

Jo look stunning in it. Her breasts almost popping out and the dress was not quite long enough to cover her magnificent buttocks. My wife has always been a beautiful, sexy lady but this dress elevated to a sexual goddess.

I remember one Saturday when we were courting that I was about 5 minutes into watching the FA cup final between Liverpool and West Ham when Jo wandered into the lounge in this dress. I don’t remember the score but I won that day.

Eventually we got married and had 3 kids. After each child our sex live diminished until we reached our present status quo where I masturbate a lot and we have sex at the weekend if Jo has enough wine to relax and remind herself that she both quite likes it and is very very good at it. This dress has been gathering dust at the back of her wardrobe for more years than I care to count.

The paradox of the situation is I now love Jo more than I have ever done before. We have shared a journey that has taken us through the depths of emotion that no couple should ever have to share.

She has sacrificed her figure to bear me children and this in turn means I love her ample curves even more. With every stroke of her belly, I am reminded of her love for me. What can ever be sexier than that?

Of course, I am guilty of neglecting Jo. When love was fresh, I let her know she was the centre of my world by constant gestures of love. Now, I’m too easily grumpy and complacent. We take each other for granted, was it ever thus?

I suggested she wore the dress one more time for old times sake. Jo found this to be a ridiculous idea as simply would not fit. I followed this by suggesting I bought her a new one that would fit, this suggestion was quite rightly dismissed as ridiculous.

Our sex life is good but its infrequency is a selfish frustration to me. This dress is simply an object that that framed a memory of a time that we have both outgrown. I would give anything to make love to Jo in that dress again but if the price was to sacrifice what we have now, it deserves to take its place in the recycling. I only hope the people who open the charity bags at Oxfam are broad minded 🙂



Three years on

Today is Thomas and Mia’s third birthday.

Birthdays should be nothing more than a joyous celebration. With the twins though, life is far more complicated than that. Emotions of all flavours will be running high depending which moment you catch us trapped in.

Earlier this year Jo lost her mother. She’d spoken to her the night before her death. “I just need to sleep love”, and she did.
Nothing has been able to fill that void in Jo’s life. There is a heart shaped hole where her mother used to lie. Anyone other than her mum is simply the wrong shape or size to fill it.
Ann, Jo’s mum, almost died ten years earlier when her battle with cancer took her to the edge of life. She won that battle and Jo experienced her mother become witness to all the key stages in her adult life from marriage to motherhood.



Three years ago today, as you will all remember, Jo in her second stab at childbirth delivered our twins into this world a mere hundred and seven days prematurely. Their fragile lives hung in the balance from the very start. It began the hardest journey of our lives.
To cut a long and well documented story very short, both twins went on to win their battles with varying degrees of success.

Mia escaped almost unscathed to become a ferocious self sufficient dynamo. Thomas has some ongoing issues that we are dealing with.
For their parents, the experience of going to sleep every night not knowing if they would both be alive when we woke up had an ongoing transformational effect on our lives. I lost count of the times I prepared Thomas’ obituary, never ultimately requiring the painful words I’d written.


Ten years ago Jo ripped up her mums obituary when she too defied the doctors. Those extra years gained with her mum should but doesn’t ease the pain of her passing. There are experiences like the twins birthday that will never be shared with her mum. There won’t be a photograph, a memory, a shared reminiscence of today’s milestone with grandma. Yet for every memory we will never have, we have a dozen of moments that ought never to have had happened. the woman who beat the doctors with the twins who followed her in her footsteps. Priceless ever last one.

With the twins we have gained memories that we never thought we’d share. There is a feeling that they, particularly Thomas, have somehow through all the best the NHS had to throw at them, cheated death.

When the first draft of his life was produced, they somehow forgot to show it to Thomas. He simply improvised his way into our hearts.
This morning I held, as I often do, Thomas to my breast in skin to skin contact. I was overwhelmed, as I often am, with so many emotions that it would be impossible to distil them into text.

He’s a miracle but I’m an atheist.


Thomas’s life so far is measured in small victories but mostly in the dent he makes into the fabric of everyone who meets him. Meeting Thomas improves your life and before you know you are conscience of the fact, you are repeating the words “Hiya” incessantly and retrieving what ever object he is chucking at the time in a game without end. Try it, I have no reason to lie to you.

We wouldn’t change our life for the world. By that I really mean we wouldn’t change Thomas. The joy we have experienced from being lucky enough to bring him up and the new experiences he has taught us, make every day worth living. He’s not broken, damaged or faulty, he’s simply Thomas just like Mia is simply Mia in all her ragged glory. The same goes for the rest of us


Lilly (7) is a both the best and worst sister mia could hope to ever have, often in the same moment.

James (16) is a conscientious fine young man, who one day we hope, will acknowledge that the the twins actually do exist.

Jo (35) is the luckiest break Thomas will have. How many severely visually impaired children get to have a specialist in this field for their mother?
I (42) am just a dick who tries his best. Balancing insanity with bewilderment and confusion are my chief child rearing skills.

The rest of our ensemble is made up of warm hearted family and friends who help us stumble our way through life bringing up too many children in a house that is too small and on too many floors for Cerbral Palsy.

Our team though is now a player short. A specialist position that cannot be fixed in the transfer window. A Grandma

Jo’s mum Ann was not perfect. She always rang at the most inconvenient of times to share the most trivial of thoughts. Living through it, it was at times immensely irritating and frustrating. We’d swap anything today just to be irritated and frustrated one more time.



Today their will be cake and a toast, tears and sick but no sledgehammer.

To the Twins and to Ann x

Goodbye and Thanks for all the Cake

The most frequent question I am asked about destroying the cake trolley is “Why?”

The most common answer I have to give is “Why does there have to be a why?”

If you have any knowledge of the wonderful Douglas Adams, you will know my Kickstarter campaign slug is based on the title of the 4th Hitchhikers book “So Long, and Thanks for All the Fish”. Some of this is in here.

If you know anything of the mighty KLF you will know what Jimmy Cauty and Bill Drummond are purported to have done. There was a bit of that thrown in there too.

“Will it be cathartic?” people also asked. “Not really”, I reply lying mildly, “I’m just creating a full stop.”

Full Version.Copy


93 people supported my Kickstarter campaign. Admittedly many of them were family and friends and most of them were either bullied or cajoled but some people actually gave of their own free will!

These nutters either “Got it” or felt some sympathy for me. I prefer the former explanation.

To anyone trying to raise money via Kickstarter, be warned although it is both challenging and rewarding it is also incredibly hard work  (and they take roughly 11% of the total in admin fees). I saw no other conceivable way of getting this event funded though and am extremely grateful for EVERY contribution no matter how small. I must also thanks the Stooshpr page on Facebook, It was via advice on there that I decided to add the Thai pie and  pint option for £15. This was by far my most popular donation point.


Unfortunately as very few of my ex colleagues seemed to buy into my campaign of cake trolley destruction, the fund raising became much harder than I had initially anticipated. I began to fear I may have misjudged the love of the Trolley and it would escape to live another day at Penelopes. (Ironically in the end, it almost did.)

To any of those I mercilessly harangued, I apologise for any offence caused. I hope you enjoy the video and we can one day laugh about it all over a beer?


Hard as it was and although it was definitely a squeaky bum experience, we amazingly crossed the finishing line with a magnificent transfer deadline day donation from Thomas Urbye. We then managed to add another £167 taking us comfortably into the winning straight. With the catering done at cost or better still given freely, we also managed to raise £130+gift aid for Scope on the night.

I initially didn’t want to attach the event to charity as it needed to float on its own merit but once it became clear it was in danger of making a profit it was an obvious thing to do. Thank you all who helped out with special thanks to Angela & Dave Sweeney at the Bank top Brewery, Dean & Becky Howarth from The Real Thai Pie Company and Brett Dawson at Turton Wines.

The icing on the cake, if you excuse the pun, was when in an extraordinary generous move, Paul Lilley donated the use of his high speed Phantom Flex Camera to film the event. Adam Barlow, the DOP on the night played an absolute blinder and the super slowmo footage looks, in my humble opinion, utterly stunning.

There were also numerous direct to Scope donations from well wishers who wanted to support me whilst distancing themselves from the perceived political nature of the event bringing us to just over the £200 mark if my sums are correct?

And not forgetting of course, Sitcom Soldiers who were amazing in hosting and filming the event for cost. Their studio space is fabulous and we planned to execute a video that would have been broadly like this. Anybody who works in telly should take a look at their space, its amazingly flexible. We used the derelict studio but they have 3 studios, a tremendous infinity curve and a fabulous green room area.

On the night, in front of nearly 40 people the cakes exploded magnificently but despite extensive test runs, when it came time for the trolley to detonate, like a stubborn Dibnah chimney (A bit of that in here too) it refused to go.

The charges were checked out and an extra one was added.

Take 2 – it shuddered but still nothing, was it indeed cursed?Eventually I was persuaded by a crowd baying for destruction, to finish the job with a sledgehammer. Did this feel cathartic? Possibly, but I was more concerned that the event stood on false pretenses. The spirit in the room told me otherwise.


A huge thanks again to all of those who turned up, I think you will agree it was an unforgettable evening?

So that’s that. And for anyone still looking for a bit of meaning in this act, the Answer to the Ultimate Question of Life, the Universe, and Everything is in there if you look closely enough…



Voodoo Shunt (Slight Revision)

On Wednesday 9th October 2013 at approx 08.39 I saved 3 children from almost certain death. As I was walking Lilly to school we heard a panic stricken mother running after an electric blue Vauxhall Minerva which was accelerating under its own steam backwards down a steep incline after her errant son had let the handbrake off. Without thought for my own safety I attacked the Minerva with my shoulder and fuelled on adrenaline I brought everything I had to offer to resist the inertia of the car. After practically burning the soles off my boots I beat the car into submission, she reached in and secured the handbrake. “Thank you” gushed the mother and I turned and utter the words I have wasted so many time on Jo in the past. “When you are parking on an incline love, ALWAYS leave the car in gear FFS!”

By any judgement this makes me a hero but there will be no parade, I am too modest for that. Speaking of heroes, ours are Mr Khalil & Mr Bukhari and all their surgical teams and anaesthetists at Manchester Childrens Hospital & St Mary’s. Without them we wouldn’t have our twins here today and in particular, Thomas.


A year ago today, on Wednesday 17th October 2012, at only 12 days old Thomas had his first life saving operation to repair a ruptured bowel at St Mary’s hospital in Manchester. He would have 4 operation before he left St Mary’s, 3 on his bowel and one to insert a shunt to control his hydrocephalus. Without the intervention of these clever surgeons, Thomas would have faced almost certain death.

Today, exactly a year after that first operation, we were back for more surgery.

Having a shunt makes Thomas Bionic. Without the insertion of a valve and plastic pipe-work to move excessive spinal fluid from his skull to his abdomen he would die. Unfortunately when you are reliant on a human made component to keep you alive you are also prone to an occasional malfunction bringing you back into hospital for a “revision”. Thomas’s shunt was not operating at its optimum. Despite him being well in himself, the evidence from weekly measuring showed his skull size was accelerating away from the acknowledged centile. For too long we had waited for it to correct itself but the evidence was damning, his shunt had to be revised.

There is a big difference from being “IN” and “OUT” of hospital. When we were IN hospital, surgery scary as it was, was just part of the process of fixing the twins to get them home. Being born so dangerously premature, at 24+5 weeks, they were in for a minimum 15 weeks regardless of any setbacks. Of course the first time your child has surgery it’s frankly terrifying, but by the third or fourth time it has become routine. It becomes something that breaks up the monotony of an extended stay in hospital, in an odd way it gives you a focus, something to think about, something to kill the time, “A bit of excitement”. Towards the end of the twins stay in hospital we had become so medicalised, so used to procedures needing doing that if Josef Mengele had popped his head in and suggested that swapping the twins internal organs over would give them a better life outcome we would probably have signed the consent form.

But for nearly 6 months now we have been OUT of hospital which makes the prospect of surgery a complete pain in the arse. Having 4 children, we have serious logistics to implement. We both work and Lilly, our 5 year old, has a social diary bursting at the seems with engagements and parties. Me and James have the boat to incompetently race on Sundays and this weekend its Bradshaw fireworks. There are financial things to consider too. Every day off for both me and Jo is unpaid and being already nearly 6 months down on wages through the twins premature birth, things like paying £70 a day for the services of a childminder of which we are not seeing any benefit really hurts our wallets. Its all a trifle bloody inconvenient if I’m honest.

We set off at 6.45 this morning as Thomas had the first available surgical slot and unbelievably everything happened bang on schedule. The two teams of surgeons, neurosurgery & bowel, had no last minute emergences to attend to which would have scuppered Thomas’s slot. He went in, they took everything out, gave it a good rodding, replaced a valve then put him back together. Textbook. We can’t say for sure that this will resolve the matter as it seems the issues lie with absorption of fluid at the abdomen and unfortunately Thomas is battle scarred from his multiple bowel operations which seems to be the route cause of the issue. It is not unthinkable that Thomas may require further surgery to find a different absorption point for his spinal fluid, with the heart being a prime candidate but lets think positively? Hopefully this has done the trick.


And there we have it, another operation for Thomas which has hopefully fixed his shunt. He is still blind, deaf in one ear, has probably cerebral palsy, definitely has hydrocephalus, a damaged palate from being on a ventilator for far too long and is still reliant on oxygen overnight. That aside he is happy in himself. He is our beautiful baby boy with a gorgeous smile, wonderful laugh and ever loving cuddles. Best of all he is Bionic! How many of you can say that?

(For anyone looking for Mia news, she is practically discharged, and despite her journey is a perfect, normal, noisy, wriggly beautiful baby girl)


Thanks again for all your love and support, best wishes X


“Cause I lost my Job, 2 weeks before Christmas”

Turns out Rodriguez (Sugarman) must have worked for ITV, pre-Christmas redundancies was standard operating procedure just like the Imperial fleet jettisoning waste pre-hyper space (ask Hans Solo)

In Twelve hours time, Thomas and Mia, our teeny tiny twins, will have been home for 6 months. Every day their dark time in hospital seems a little further away until outpatient letters drop on your doorstep to cast a shadow over our lives. “How’s Thomas doing”? people often ask “Still Blind” I reply, never quite getting the laugh I envision (I Must get a better writer). “Really blind?”, “Pretty much”. Wait till he’s older and I’ll ask him how much?

The one good thing about having a bionic disabled special needs son is the blue badge. As long as Thomas is onboard we can drive straight in, avoid parking fees and get the best spot in the house. Of course this benefit is negated by the oxygen cylinders, the bulky equipment, his blindness, his ongoing hydrocephalus and the temporary faux celebrity status. Luckily our local star is on the wane, people have stopped stopping us to ask a myriad of well intentioned but banal questions and resorted to parking their cars almost entirely on the pavement to block our twin prams passage. Wankers.

(Mia is on the verge of crawling in case you are interested?)

One of the last things we did before Jo’s cervix collapsed is join Delph sailing club, unfortunately we spent the arse end of 2012’s sailing season embedded in various North West hospitals. When the twins finally came home we went back to Delph and to cut a long & tedious story short, we now own a fully functioning sailing boat due to the selfless generosity of Kaye & Dick Hodgson who bore us only minor bitterness for Bolton beating Preston in the 2001 play-off final. Last Sunday, me and James made complete tits of ourselves by failing to even sail our Miracle over the start line in a handicap race. We left, head bowed in shame, before drinks. It’s the taking part, I remind myself. I awake in the middle of the night remembering the incident in terror.

The most irritating thing about this unintended journey our life has taken is people telling us “How strong we are”, or how Thomas & Mia “Couldn’t have asked for better parents”. Sorry but that’s just bollocks. From the NHS, from Bolton Music Service to Delph sailing club I have discovered that despite the protestations of our ruling classes, society is in good shape. People give their time, freely and willingly. When watching my eldest son James playing in his guitar ensemble I am overwhelmed by a feeling of guilt that the Bolton Music Society exists on a wave of goodwill and talented musicians like Guy James giving their up their precious free time for the good of the youth tomorrow whilst I give so little back. Using Delph Sailing Club as a metaphor for my life, strangers have welcomed us, accepted us, helped us and moved us on drawing satisfaction from their lives simply by giving without expectation of payment or reward. Not even getting cross when we recklessly sailed into oblivion last week, merely encouraging us to practice harder and try again.

It is you are strong, your words and love keep us moving forward and stop looking back. When we look back we are doomed as the journey we have been through is too tricky to comprehend. Forward is the only option, we are on a Starboard tack.

Love Ian, Jo, James, Lilly, Thomas & Mia

6 months is a very very long time

On Monday 26th March 2013, after 33 days of “Normality”, Thomas John Brown (Twin 1) stopped breathing. Only for a moment but a moment none the less. I was busy upstairs getting dressed, Jo witnessed it all. With me due to start editing in exchange for money on Tuesday, the Browns were on our way to hospital again. Well timed son, bloody kids!

A week in hospital followed, poor thing had caught a cold and was too fragile to cope unaided. Somehow, as has become our lives, we muddled through. Jo camped out at the hospital, Lilly was despatched to Grandma’s (no6) and we played pass the parcel with Mia. I completed my 3 day edit, whilst Thomas was moved to HDU, tube fed and ventilated. Scary perhaps, but oddly routine for us, just a routine we had hoped we had outgrown.

6 months ago today to this very moment I was at home at Browntowers with the family, relaxing after a particularly average meal at The Latino Lounge. I had a full order book, Jo was a good 5 months pregnant, the kids were happy, the epic mezzanine wetroom building work was reaching completion and all was well with the world.

What a difference a day makes? 24 hours later, after the most extraordinary day off our lives we were sat in Bolton Hospitals NICU watching our severely premature children fighting for their lives, our world unfolding in front of our very eyes.

Suffering from severe bleeding to the brain, it looked as though Thomas wouldn’t make it through the first 48 hours. We assembled pretty much every living relative to say their goodbyes but he miraculously rallied, making fools out of our medically informed pessimism. 3 further times Thomas journeyed to the edge to play chicken with death. Each time God blinked.

The next 5 months stretched us to the very limits of our endurance. 5 lots of surgery, 3 months with the twins in separate and distant hospitals. My 40th birthday, Christmas, New year. All came and went barely celebrated.

Life soldiered belligerently on. Needing money and distraction, I returned to work making top class daytime entertainment for ITV. Lilly (age 4) never had so many sleepovers, party invites & days out. In-between she was a comforting presence at the twins bedside, nursing them, singing to them and generally being a top class big sister

Nurse Lilly

After 139 days our ordeal was over and normality could finally begin.

A happy ending? With the benefit of hindsight it certainly seems that way but we are able to remember the journey from the wrong end. When it started this outcome was not guaranteed. It looked likely that one, maybe both of our twins, wouldn’t complete their impossible journey. Fortunately, as you all know, they did.

On Easter Monday, we were able to bring Thomas home after his 2nd much shorter stay in hospital. Exhaustion was met with a bombardment of health professionals. The outreach worker, the health worker, the audiologist, the dietician & the optometrist all either came to visit or engaged us in long telephone conversations.

We were already aware that Thomas had had an inconclusive hearing test on his right ear, meaning he may (or may not) be partial deaf. His eyes had been repeated tested in hospital and he had been signed off but we were getting increasingly concerned about his inability to fix on our faces when interacting, something that our reference baby, Mia, did easily and with pleasure.
The optometrist had a cancelation that afternoon and was quite forcefully persuasive that we should fill it. After a week suffering patient-line we just wanted to cuddle up and watch crap telly but Jo reluctantly wrapped Thomas up and set off for the appointment, we assumed it would be routine.

Tom J B

It would have been a miracle if Thomas had survived his incredible journey intact. Sadly he hadn’t. Although his eyes are functionally fine, his cabling is not in great shape. He has a condition called CVI and is possible severely visually impaired. We weren’t prepared for this news and if you are under any illusion that we are strong, the last few days would would proof that we are not. The mood has been black at Browntowers, the future is not how we planned.
Coupled with his shunt and a possibly dicky ear means life will be tough for Thomas John Brown. Just for good measure he is still on Oxygen too, making every journey outside Browntowers an exercise in military planning although in other news – Mia is perfect (touchwood) If we could clone her, we would be millionaires.

So thats our new life. The twins survived their epic journey but the price Thomas has paid is heavy. He is a child with substantial complex needs, what a jolly good piece of luck for him that his mother happens to be one of the finest special needs teachers in the land.

Life will not be easy for us going forward, the money has nearly run out and the editing world is barren at the moment. Jo returns to work in July and that is when the fun will really begin. Looking after a gaggle of children at home is hard but enjoyable, doing the same thing whilst both holding down jobs will be quite something else.

Thank you for all your continued love and support, it means so much to be in so many peoples thoughts x