Friday, 11 November 2016

Missing Dad

Just Like Grandad
It's at funny times I miss my dad; when I'm driving somewhere new and I've no one to discuss the route with- I'm sure he knew the fastest way to get anywhere - or when I catch an episode of Deal or No Deal and I remember how, when he was ill and I was pregnant, we'd spend hours sat watching it and discussing what we'd do. 

I don't miss him all day every day, but I think about him often. I know that if he was here, he'd be project managing this whole Big Build. He'd have spent hour after hour here getting the job done. My Father-in-law too. The pair of them would have been hammering and sawing and building and fixing, putting to shame lads half their age. 

I miss them both.

The Big Build, as exciting as it is, is a huge reminder of the important people missing in our lives. The two men, who'd have built it single-handedly if they could, and the two women who would have filled it with such warmth and love. 

Trying not to drill their fingers to the roof
It should be John Joe on the roof, teaching his grandson how to hold the saw correctly.  It should be my dad with Sean on his lap in the digger, teaching him how to drive it, as he did with me when I was 7.

There are times I look at this project, the house that it will become and how it will change all our lives and I feel incredibly lucky, truly blessed to have such people in our lives to help us achieve this.  Yet there are other times when I am acutely aware of the people that are missing and I know that I would trade it all in a heartbeat to have them back.

We'd have had a fight with the two dads about the flat roof- of that I'm sure. Neither would be impressed with that decision. And John Joe, my father in law, would be cursing me that I've still not painted that side gate! He'd have given up nagging by now, I guess, and done it himself. 

I'm not sure if I believe in ghosts as such. Not the spooky, white sheets over your head kind anyway. But spirits, or souls, or positive energies or whatever. I believe in that. 

And whilst they may not be physically here, giving the orders, cracking the jokes and wheeling barrow after barrow load of screed through the house, I know they're both here, watching over it all, tutting when I'm not bringing the tea fast enough and rolling their eyes at each other. The foreman and the site manager.

I hope they're proud of what we've achieved so far. 

Dad looking amused at my dubious sawing skills

Monday, 31 October 2016

Just Bog Off!!!

This is Hugh.

Hugh is 6.
Hugh uses a wheelchair.

Hugh likes to go out, just like other 6 year olds.
Hugh sometimes needs to go to the toilet when he is out, just like other 6 year olds. 

This is a disabled toilet. 

Hugh is disabled.

Hugh has a special key that lets him use disabled toilets.

Hugh can't use this disabled toilet though. 

Hugh can't sit or stand by himself. 

Hugh wears nappies. 
Just like Teddy.

Where would you change Hugh?

On the floor?
Just like Teddy? 

Hugh looks at Teddy on the floor.

"Bog off Mum," thinks Hugh. "I'm not lying on a toilet floor!!!"

Where would you change Hugh?

This is a baby changing facility.

Hugh is NOT a baby. 
Hugh is 6!

Teddy can fit on the changing table. 

Hugh can't,  because Hugh is not a baby. 

Hugh looks at Teddy on the changing table.

"Bog off, Mum", thinks Hugh "I can't fit on that baby changing table!"

Where would you change Hugh?

In the boot of the car?
Teddy doesn't mind!

Hugh does.

Hugh thinks, "Bog off, Mum! I'm not lying in the boot of the car!"

Where would you change Hugh?

"How about here, Mum?" Thinks Hugh.

This is a Changing Places Facility.

It has a hoist to help Mum lift Hugh. He's 6 now and 6 year olds can be quite heavy.
It has a height adjustable bench to lie Hugh on. This helps Mum's back.

The changing table is big enough for Teddy.

And it's big enough for Hugh. 

Over 1/4 of a million people would benefit from a Changing Places Facility.  
Sadly there are less than 900 of them in the U.K. 
For many people an ordinary disabled toilet is not enough. 

Sign the petition here to get that changed!

Thursday, 20 October 2016

The Big Build - Disaster Strikes

Morrisons cafĂ© appears to be my go-to place when I'm on the verge of a nervous breakdown, I think. Having come close to bursting into tears again after discovering not only woodworm but damp in the house I figured it was best to get away and find some perspective. Ordinarily I wouldn't leave the house with Hugh the day after being discharged from hospital but the sound of the circular saw screeching as it ripped through the floorboards in my bedroom was upsetting him too much, as well as setting my teeth on edge, so we left in a hurry. As it is, he is sat opposite me snoozing contentedly while his pump feeds him a milky lunch and I munch on a cheese and onion toastie. 

The platitudes that I usually console myself with "it'll all be worth it in the end" and "at least we found it now and not when the job was finished" aren't having the desired effect and I had to strongly suppress the urge to scream. In truth, I'm feeling a little hard done by. This never happens on DIY SOS. 

So, in an effort to redress the balance and stop myself sulking like a child, I'm working on some reasons to be cheerful and I'll return home with renewed positivity. 


1.    Our carpenter. Most of the people helping on this Big Build are friends we've known for years. Stephen grew up with most of them. Some of these friendships have lasted 40 years (yes he really is THAT old!). What they're doing is amazing but they're fuelled by a lifetime of friendship. Not so for Neil- he only entered our lives after the reception teacher encouraged our sons to be friends 3 years ago. Despite knowing us such a relatively short time, he has worked tirelessly to get our house back to a more inhabitable condition. He's there now, while I'm sulking in Morrisons. He's there more than I am, I reckon. And whilst he might take the piss out of me for not making enough cups of tea and he can be quite annoying after a few beers, we really couldn't have done this without him. 

2.    Hugh's home from hospital and pretty healthy considering. Sometimes when Hugh's had a bad run of seizures he can be groggy and off colour for days. Instead he's full of beans and really happy. It means I can leave the house with him quite easily. And when we need to evacuate the house for a few hours while woodworm treatment commences tomorrow, this won't be an issue as he's ready to go back to school anyway. 
Happy to be home from hospital
3.    So far (I really shouldn't jinx it like this) but Sean's and Hugh's bedrooms have remained unaffected. Hugh's bedroom is his sanctuary. His favourite place in the world is his bed. It's because of this we've resisted moving out to my mum’s while the building work is carried out.  (Well that and the fact it would be a nightmare to get the kids to school in the morning from her house). He can still chill out and listen to his music and watch his bubble tube and his flashing disco lights. Having this space keeps him calm, keeps him happy. And I'm grateful for that.

4.    Sean's room has bunk beds and the bottom can either be a double bed or a settee. Lately it's been serving as our living room/dining room. We eat our dinner in there, Sean does his homework in there and we play cards in the evening in there. Yes, cards!!! We have no TV at the moment as the aerial is disconnected. It's a bit like living in the olden days! It's been quite fun actually and Sean has loved learning new card games. Tonight, with no floorboards in our bedroom, we can pull it out into a double bed and we'll still have somewhere to sleep. That's something to be thankful for. 
Does this count as 'sitting down to eat together as a family'?

5.    There's a curry in the slow cooker and wine in the fridge. Thursday evening sorted. 

So, positive mental attitude resurrected, I'm able to face the mess and the chaos that awaits.
I think. 

Or maybe not ... *goes off to cry*

Monday, 17 October 2016

Seizure Watch

If Seizure Watch in our house was graded like a terrorist threat level then we've been upgraded from substantial to critical- meaning an attack is highly likely and imminent. Hugh's had two severe seizures needing resuscitation since he woke this morning. That's twice today he's stopped breathing completely, twice today he's gone blue, twice we've had to breathe for him and pump him full of drugs until the seizure stopped and he took a breath for himself. I'm expecting another before morning. In fact I'm sat here waiting for it. Literally. I'm sat by his bed, watching and waiting. The midazolam is out, the phone is charged and ready to call 999, the bag and mask is by his head, connected to the oxygen, he's hooked up to the sats monitor. The second he stops breathing, I'm ready to pounce. I'll probably doze in the chair next to his bed if I can so I'm wearing clothes comfortable enough to sleep in but nothing obviously pyjama-y in case I'm whisked off in the ambulance at 2am. The hospital bag is packed and waiting at the front door. Contingency plans for getting his brother Sean to school in the morning have been put in place. Yes, we're on high alert; the threat level is critical. 

And how is Hugh behaving in all of this? You might imagine he looks poorly or is sleepy or has a temperature or something. But no, right now he is rolling around his bed laughing. For all intents and purposes he looks fine. And he is fine. Until suddenly, he's not. 

And that's the difficult thing with his seizures- there's no rhyme or reason or warning to them. This morning he woke happy and delighted in lying there punching daddy in the face (I too found this quite amusing). 

And then he stopped breathing.
Just like that. 

Perfectly happy one second to dying in front of our eyes the next. And yes I realise that sounds a bit melodramatic but it's true. He stops breathing. Completely. He won't start again unless the seizure stops. The seizure won't stop by itself. Each time this happens Hugh is completely reliant on us to breathe for him, to get drugs into him to stop the seizure; to save his life.

And after? He sleeps. A combination of the powerful drugs and the after effects of the seizure knock him out. His breathing becomes shallow and laboured and he is deathly pale. He remains limp  and incredibly still. Almost lifeless. Almost.

Today we drove home with him in that state. Debating whether country roads or a busy m6 motorway would be easier for an ambulance to get to us should we need it. I watched him like a hawk the whole way, barely daring to breathe myself. At least once home I know an ambulance can get to us quickly, I know the local hospital staff know him well. 

And when he wakes, it's like it never happened. His pupils might be a bit larger than normal and his limbs a bit floppier- the after effects of his heavy drug use- but otherwise he's fine. 

Reassuringly fine. 

Absolutely fine. 

Until he's not. 

Edited to add: Shortly after finishing this post the seizure we were expecting arrived. We resuscitated him again and called the ambulance. We're currently sat in A&E waiting to be admitted while Hugh recovers from this latest episode.

Tuesday, 11 October 2016

The Big Build for Hugh - The Half Way Point

Considering that the building work has been going on since July, I think it's quite impressive that yesterday was the first day that it all just felt a bit too much and I had to resist the urge to cry. Without heating or hot water, with nowhere to sit and the air still pretty dusty, I gave up and decided to sit in Morrisons where I could have a cup of tea in the warmth before I summoned up the energy to face the mess. You'll be pleased to know I didn't burst into tears and now with the heating and water back on, the house (relatively) clean and sat in bed with a glass of wine (there really is nowhere else to sit) it doesn't seem so bad after all. So I thought I'd take the time to update you on how the #BigBuild4Hugh has gone so far. 
I'm sure there was a wall here last week

Our friends have continued to amaze me, turning up weekend after weekend and/or evening after evening to help out. I'm fairly certain some of them are spending more time at my house than their own. The actual structure of the house went up in less than the 9 days that I joked about (I suggested that since Nick Knowles and the DIY SOS team could do it in 9 days then there was no reason these guys couldn't). It wasn't consecutive days, but counting full days worked, I think it was up in about 7 days- from digging footings to laying the last bricks. Pretty impressive. Although it left just 2 days for the rest of the work of my 9-day target was to be met.

The roof was next. From where I stood (at the kettle making tea mostly/or on the settee drinking it perhaps) it looked like a rather soul destroying job: a lot of hard work and pain staking effort went into that roof. It's up, it has two of the four roof lanterns in and it is watertight. (Bar the big holes for the roof lanterns of course). The windows are in, the external doors are nearly in and the scaffolding is down. 

It's all looking pretty exciting

Last weekend was all about knocking down the walls and this was the bit I was dreading from the start. The existing kitchen was knocked down along with most of one side of the house. I hid away for that bit- we spent the day with my cousin and the night at my mums. I figured the dust would be no good for Hugh's chest or my asthma. They've cleverly boarded up the section of the house we're living in so that we're not really exposed to the dust on the building site side of the house. There was some, of course, but it hasn't taken me too long to clear it up. 

We're currently living in our bedrooms, with the bathroom and a tiny makeshift kitchen with a sink, a fridge, a microwave and a washing machine. This was more than I expected to be honest- I'm pretty chuffed to still have access to my washing machine. I've no cooker though so I'm having to make meals using a slow cooker and an electric steamer, which isn't too difficult but means I have to be organised. There's been the odd takeaway or 10 of course too. Storage is an issue and it's a bit like a game of Tetris trying to find space for everything. Hugh's many chairs being the biggest obstacles to work around. To take a shower you need to move one of them into the hall, which invariably means moving two others into bedrooms. Honestly... the boy has a LOT of chairs. We eat our dinner on the bottom bunk of Sean's bed and can watch TV there but once he's in bed at 730 there's nowhere else to sit. Friends popped over at the weekend and with the lack of seating and the lack of heating, we ended up having to light a fire in the garden and sit around that instead! 

Leaking pipes can make attractive water features ...
There's been a few low points- the rain coming into the kitchen at 2am, discovering a burst water pipe, the heating packing up. But actually we've been pretty lucky. It would have been much worse to find the water leak when the job was finished. And any time it feels a bit too cold or a bit too messy or a bit too cluttered, I remind myself that it will all be worth it in the end. And it really, really will. 

The things I can't wait for…
*Having somewhere to store all of Hugh's chairs,
*Being able to wheel him up a ramp rather than dragging him up the front step,
*Having storage for all of his feeding equipment,
*Having a fancy new kitchen (not really for Hugh that bit is it?),
*Having access into the garden for Hugh,
*Having enough space in the kitchen that me and the two boys can all be in there at the same time,
*Throwing a massive party to celebrate its completion!!!

Speaking of which, to celebrate the half-way-ish stage and to say a big thank you to everyone that has worked so hard on the build, we decided to throw a bit of a party. Through amazing good fortune, this coincided with a marketing campaign Magners were running locally where they turn up at parties with a load of cider. A few tweets later and the van arrived.  Not only they did bring enough cider to keep a lot of builders very happy but they brought an Xbox with FIFA and set that up in the garden along with a photo booth, a football table and a table for playing 'beer pong' as well. To borrow a saying from another well-known alcoholic beverage 'if Magners did parties...' It really was brilliant, there was a great atmosphere and it was such a funny day- the highlights being the dizzy penalties and watching the kids playing beer pong - with cherryade!!  The completion party has a lot to live up to!
L-R: The family looking silly, Just some of the people responsible for the mess the fabulous extension, With Henry & Chris (the party men from Magners) and the very last case of cider!

Thursday, 6 October 2016

An update - Four weeks after VNS Surgery

When Hugh finally woke after his VNS surgery he was irritable. Although non-verbal, he was able to make it pretty clear that he didn't want to be there anymore and was very unhappy whenever the nurses came near him- even if this was just to check his temperature. This is quite a big step for Hugh, he usually doesn't react until they've actually started doing something to hurt him, like cannulate him for example. He's starting to recognise now though that potentially these people in blue are coming to do something to him that he won't like. It's a positive step in terms of development, in recognising people and situations and in understanding cause and effect. It's also a sad reflection of the amount of times he spent in hospital too though.

Once home, Hugh was a lot happier and barely needed any pain relief. I was shocked at the size of the dressings and even more shocked when I saw what was underneath them. I'm squeamish anyway - after his gastrostomy I was given a sharp telling off by the nurse that if I wouldn't look at it then I couldn't clean it and therefore wouldn’t be allowed to take him home- so perhaps I'm not the best judge, but the incisions seemed so much bigger than I'd expected. His chest was bruised and the device was a clearly visible lump under the skin, the incision on his neck made it look like I'd tried to decapitate him. I was probably naive, and as I said I'm particularly squeamish anyway, but he just looked a lot more butchered than I'd expected him too. That said, the chest incision is healing into a really neat line and the lump under the skin (I was probably being ridiculous to have expected it to be invisible, given the size of the device and Hugh's tiny frame) doesn't turn my stomach any more. His neck is still quite red and inflamed looking some 4 weeks on and the dissolvable stitches still haven't dissolved at each end. The redness isn't helped by Hugh's insistence on scratching at it every time I get him dressed or undressed, so I'm covering it in Savlon every day desperately hoping it won't get infected. 

Programming the VNS image credit
Two weeks after surgery, we returned to hospital to have the VNS turned on. I was amazed how this was done. They simply hold a large wand against his chest and programme it through an attached portable tablet. We were warned he might cough when it was switched on, but other than his breathing momentarily sounding a bit like Darth Vader there was no other sign that anything had happened. The device was set to fire 30 seconds of current (set at 0.25) up the vagus nerve to his brain every five minutes. We were also given a strong magnet to swipe over his chest to send a stronger burst of electrical current should a seizure break through. It was all very interesting and exciting. We were booked in to come back again in a fortnight to have the device turned up and told not to expect to see any changes for a good few weeks yet.

The Magnet image credit

That first afternoon and evening I was quite anxious. Hugh was unusually still and quiet. For a child that moves his arms and legs almost constantly this was really strange. That night his heart rate was much higher than normal and his sleep was unsettled and disturbed. This pattern continued for much of the first week though the unsettled nights could well have been caused by adjusting to the first week back at school. His heart rate has since returned to normal. 

Although we are not expected to notice any changes to Hugh's seizures until the device is set at 1.0 (we're currently at 0.5 due to increase to 0.75 next week and up to 1 two weeks after) we've already noticed some significant changes. Initially there was an increase in the frequency of seizures although the duration dropped from his usual 10-20 minutes to between 2-5 minutes. Furthermore, the seizures presented differently with less movement and jerking of his arms and legs.  This is a positive step and leaves me hopeful that in time and with further increases we may manage better overall seizure control.  Here’s hoping anyway.

Tuesday, 13 September 2016

VNS - The Surgery

"So, where are we off to now then mum?"
Second on the list for his VNS surgery, it was nearly midday before Hugh was called down to theatre. Unaware of what lay ahead he sat smiling in his wheelchair in the flimsy cotton gown. The theatre staff were brilliant and thoughtfully allowed me to take him down in his chair; he'd feel more comfortable and less threatened that way, rather than wheeling him on his hospital bed. He smiled all the way down to theatre, enjoying the new adventure.

Although six years old, cognitively he's still like a baby so there was no way to explain what was going to happen to him. Instead he sat in my lap and I cuddled him and sang nursery rhymes as they held the gas mask in front of his face. I admit I had to swallow a rather large lump in order to keep singing. I felt like I was tricking him somehow. 

The hard part, I find, is handing him over, limp and lifeless, when the gas has done it's job. Leaving your child with strangers, when they're so fragile and vulnerable is utterly soul destroying. It took every ounce of my strength to walk away after giving him one last kiss on the head. 

I'm not sure it gets any easier, watching your child have a general anaesthetic. Despite his complex needs Hugh has had comparatively few GAs - two for MRIs of his brain, one to have his tonsils and adenoids out and one to have his gastrostomy feeding tube put in. It's probably more than most six-year-olds but it's significantly less than some children with conditions like Hugh's. 

Waiting ... just waiting...
The VNS surgery takes about an hour. They make a cut in the chest area to place the electronic device and another on the neck where they attach the electrodes to the vagus nerve. Thankfully, they don't have to go anywhere near his actual brain during surgery. 

I was told to expect Hugh back after around two hours, by three hours I was becoming quite anxious, pacing the ward and moving things from the locker to the bedside table and back again. Finally after 3.5 hours we were called down. He'd struggled to breathe after surgery and they'd had to keep him intubated for longer than expected and when he did finally start breathing on his own his oxygen levels were too low. When I saw him in the post-op recovery room, he looked so small and frail.  Whilst I know that this is the best chance we have of controlling his seizures, I couldn't help but feel guilty for putting him through the pain.
Back on the ward, after surgery.

Although it took him quite some time to come round, the operation was deemed a success. Hugh remained in hospital overnight and was discharged the following day, with an appointment to switch on the device in 10 days time.

And so, Hugh's VNS adventure begins. 

"Adventure? I'm up for an adventure ..."

You can find out why Hugh needs Vagus Nerve Stimulation therapy here: The Next Step


Thursday, 8 September 2016

Waiting for VNS surgery

Waiting on the ward
Thanks to a cancellation, Hugh's VNS surgery happened rather unexpectedly towards the end of August. With only hours to pack and get to the hospital, I didn't really have enough time for the nerves to hit, or the realisation of what was happening to sink in. But that night after his bloods had been taken and we'd been prepped for surgery the next morning, I sat by his bed and began to think about what was in store.  
Whilst I can't deny a large part of me was anxious about the general anaesthetic and the operation in general, my overriding feeling was one of hope. Hope for an epilepsy free future. Or at least one where epilepsy didn't completely rule (and often ruin) our lives.
I imagined being able to go on holiday as a family to visit Hugh's cousins in Ireland; taking him to see where his grandparents (and great grandparents)  were born, and where his dad and I spent all our summers as children. I thought about the beautiful beaches we'd visit, the rocky coastal paths we could stroll along.
I imagined not having to plan everything around knowing where the nearest hospital is, without having to 'risk assess' every journey and constantly thinking about what you'd do in an emergency. Imagine driving without checking him repeatedly to see if he was breathing and without always planning where to pull in to resuscitate him, should the need arise.
I thought about Hugh having sleepovers with his brother at their friend's house and how I could leave him to play with other kids without me constantly being there watching him, checking. I thought how his granny would love having both boys over to her house for a sleepover and how Stephen and I wouldn't have to carefully plan how to use the allocated care hours we get so that we can go out together.
And I thought about the effects his seizures must have on Hugh. Almost every night for 10 minutes or more, his whole body stiffens and spasms. His legs and arms must constantly ache from that.  He can lose seconds and sometimes minutes at a time during his regular absence seizures too- how confusing must that be for him? Every few months he has clusters of seizures that terrify him- he screams and cries in pain and fear. I'd love nothing more than to never see that terror in his eyes as he looks at me pleading for it to stop and I'm powerless to do nothing other than sedate him. The huge apneoic seizures (where he stops breathing) that I live in fear of, threaten to starve his brain of oxygen, threaten to kill him each time they happen. He's lost skills in the past because of them- the ability to swallow, the ability to smile. He's managed to relearn lots of things but each apneoic seizure threatens to damage his brain and take away those skills he's worked so hard for. When he does, thankfully, recover, he is exhausted and will sleep for hours. Imagine him never having to go through those again? 
Sweet dreams before surgery
Of all the aspects of Hugh's numerous and complex disabilities and health needs, his epilepsy is by far the most challenging. Without it, life could be so much better for him and for us. 
VNS therapy is our last hope at getting rid of that evil demon from our lives once and for all. As I sat, watching him sleep peacefully, I felt hopeful that this was our miracle, the thing that would change Hugh's life and I prayed to God that it would work. 


Wednesday, 20 July 2016

The Big Build - Birmingham Style

I love watching DIY SOS The Big Build.  I love seeing people having their houses transformed.  I love the before and after shots.  I love the joy and wonder on their faces.  I love how the houses are always designed to meet the families’ needs and the clever, practical solutions that the team create.  I love that despite there often being a story of disability or illness that has prompted the need for The Big Build, the end result never looks like a hospital.  I’ve seen them fit a through floor lift painted yellow to look like a digger, I’ve seen brightly coloured wet rooms for children that look fun not clinical.  It really is amazing and inspiring. 



Yet the thing I love most about DIY SOS, the thing that invariably moves me to tears, is seeing whole communities come together for the sake of one family. The house is always full of tradesmen all willing to give up their time and a day’s wages to help someone who needs it.  There are reams and reams of people on hand supporting Nick Knowles and the team to make the types of adaptions and improvements that will make life more manageable and less challenging for the family involved.  It’s not so that they can be on TV, most people are rarely in shot for more than a few seconds, and it’s not to advertise their businesses – the BBC won’t allow that so even branded work shirts aren’t shown.  No, it’s simply to come together, to help someone who needs it.  At a time when there is so much hate and fear in the world, isn’t it great to see love like that?  To see people doing good things for others, just because.


Imagine if real life were like that?  Imagine if such things didn’t just happen on the TV?


Our house isn’t really geared up for Hugh’s needs.  It’s a bungalow which is great as I don’t have to lift him up and down the stairs, but I do have to drag his wheelchair up and down the front step every day.  His bedroom door is wide enough to get his wheelchair into, so I don’t have to carry him too far to get him to bed, but he can’t go anywhere beyond the living room.  The doorway into the kitchen is too narrow to fit his chair through.  Recently his increase in seizures have meant that now, more than ever, I can’t turn my back on him.  Making dinner involves me parking his chair by the kitchen door and popping backwards and forwards to check on him, or putting him to bed and watching him on the video monitor.  Hanging out the washing is all but impossible if Hugh is home.  I can’t get him into the conservatory either and the only way to get Hugh into the garden is out the front door (down the step) and up the side of the house.  For a boy that loves being outside, he spends precious little time in the garden. 


We need to make some changes.  We need a new entrance into the side of the house where we can get decent ramped access without losing all our parking space on the drive.  We need a large kitchen/dining area where all the family, including Hugh and his enormous bean bag, can be together while I’m preparing dinner.  We need level access out into the garden so that Hugh can come out and in as he pleases. 

Digging for treasure.

We need a Big Build.


It turns out, you don’t need Nick Knowles and TV cameras after all though. 

You just need some friends. 

Some good friends.

Really good friends. 


The last few weekends and a fair few evenings have seen our garden packed with a rabble of likely lads all doing their bit to make life better for us, for Hugh.  The skilled and the slightly-less-skilled-but-keen have worked tirelessly digging footings, pouring cement, ripping out the existing conservatory, laying bricks and shifting barrowload after barrowload of rubble to the skip at the front of the house.  It hasn’t looked easy, especially not in this blistering heat, and all they’ve needed in return is few cups of tea, a sandwich here and there and the odd can of beer or 3.

Sean getting stuck in.

It was humbling to look out, that first Saturday morning at 7.30 and see them all there, ready to help.  Giving up their Saturday morning lie-ins (should they be so lucky), their weekends with their own children, for us.  It is by no means a small task they have undertaken and I know that some days have been particularly hard work.  Yet undeterred they return, after a full day’s work or on their days off to build a better life for Hugh.


Never too young to learn a skill!
The difference this will make to our lives, once complete, will be huge.  The simple pleasure of being able to bring Hugh out into the garden when the sun is shining can’t be underestimated.  Being able to bring him easily into the house, without dragging a muddy wheelchair into his bedroom or the living room will be lovely.  I can’t quite convey in words how much this means to me, to us as a family.  I get teary-eyed and a little choked up trying to explain how simply amazing this is and how lucky I feel to have people in our lives that would do this for us.  We are truly blessed.


One of the lads joked that I’d have to make a DIY SOS style speech when it was all complete.  So here’s my speech now, because I’ve no doubt I’ll be sick of the sight of you all (and you of me, and each other) by the time it’s finished. 


Thank you.

Thank you to those who have already spent far too many hours here and to all of you who will be in the coming weeks and months.

From the bottom of our hearts thank you. 




Who needs Nick Knowles anyway?