Friday 31 July 2020

Life goes on...

I'm not sure where to begin. I guess the last time I wrote we were some months into Connie's devastating diagnosis. Her disease is Friedreich's Ataxia. It took me a long time to be able to use the F word on social media. 

It's a cruel disease. Now we are about 3.5 years post diagnosis. What has changed? 

I accept it all. The disability part, the death part. All of it. Connie says she's accepted the death part but she can still be floored by glimpses of how her disease will affect her future. We're working through it and she has a lot of specialist support. Her main response is denial but denial doesn't work forever as reality will always creep in. 

Physically, she has declined a great deal. She can walk only with someone taking her arm and a lot of her weight and it's very slow. Mostly, she uses a wheelchair. She's still in mainstream school. We chose a wheelchair friendly school. 

Her heart is stable, her scoliosis is severe, her speech has worsened and her sight and hearing have been adversely affected. She has all of this to deal with as well as just being fourteen. 

Socially it's isolating. Her difficulties make her uncool. To avoid being hurt by people she's decided not to make new friends. She has only one friend at school and it breaks my heart. This is the hardest part of the disease for me. Watching the way it chips away at self esteem until it's gone. 

But it is the new normal for us. A phrase which I'm sure you all understand and are familiar with. Life goes on. We have ups and downs. It's not always easy and I know the future is bleak but we try not to look too far ahead and we try to get a lot out of life and the time we have. 

In 2018, Connie spent 10 days in Florida with an amazing charity called Dreamflight. She went to all the parks, swam with Dolphins and was treated like a visiting dignitary. I defy you to watch this film without sobbing...

That was a life changing moment for Connie. Whereas before Dreamflight she struggled to say anything good about herself, afterwards she acknowledged she was brave.Without hesitation. And she made a great friend in her roommate Mollie. They are still in touch. 

Last summer saw us build a ground floor extension for Constance because reaching her upstairs bedroom and bathroom was not going to be a long term possibility. We had help from a DFG grant, another discretionary payment on top, help from our families and a charity. We built a huge side extension (wheelchair users need a lot of space) with a separate entrance, carers room/sitting room, a large wheelchair friendly bathroom and a large bedroom overlooking the garden. 

I knew I wanted Connies bedroom to be bright, light and bringing the garden in. My inspiration pictures were; 

So that was the plan. And that's what we built. 


Connie is a bit of a Goth... 

And her hearts desire was this photograph... 

So plans changed. And not having so much as looked at a paintbrush for a few years, I embraced the challenge and got to work....


 So Connie has taught me, DIY is not all about adding value to one's house. It's not about adding kerb appeal and maximising potential. It can be all of those things of course, but now, for us , it's about having the bedroom of your dreams because sometimes, life is short. Creating a magical space is where it's at for us. 

The bedroom, or Goth Towers as we call it, is not finished. There's still furniture to paint and far too much white in there. We don't always see eye to eye, Connie and I. She reigns me in from full on Disney Haunted Mansion. She explains that Old House is ok, Haunted House is not. I have been put in my place. But so far, I think we have fullfilled the brief which was ''I'd like a bedroom that no other teenage girl has.''

We've enjoyed it. 

So much so that I'm thinking of hand painting emerald green Chinoiserie walls in my bedroom. Why not? You can see where this is heading. We are going to be one of those houses that goes viral if we ever put it on the market! 


But I don't care. We all deserve a fantasy room.

With the help of our families and one very kind stranger, we were lent a flat just minutes away from The London Eye for the New Years Fireworks at the beginning of 2020. Connie always said she'd like to go but there's no way she would cope with the cold as she cannot control her temperature due to her hear disease. Luckily Mollie from Dreamflight was able to join us so we made dreams come true for them both. Our windows looked out onto the Thames and the London Eye so we spent a relaxed evening in a restaurant before the fireworks. No need to claim our spot in the cold. 

It was incredible. 

Little did any of us know then what 2020 held in store. We've been shielding Connie for five months now. Jason's work has all but dried up.  I nearly lost a dear friend. She survived Covid but will never be the same. 
I hope you and yours are safe and well. 

Until next time, dear reader, stay safe. 

Sunday 26 July 2020


Hello! Is anyone out there after all this time? I know some of you are as I've just found some messages. Thank you for those.

I've decided to blog again. A lot has changed. We have a lot of catching up to do. I didn't really intend to stop blogging. It wasn't a conscious decision. But life shifted gear and blogging stopped. Lots of things stopped. But we are all still here. 

So hello dear reader. We will catch up very soon.

Saturday 15 April 2017

An explanation...

It's been almost nine months since I last blogged. I need to get this post over with and tell you what's been going on.

In August last year, my daughter finally got to see a paediatrician after almost a year long wait. She was referred because she had coordination problems (nothing new) and we thought she might be Dyspraxic. In the year that we waited, she saw a Physiotherapist and an Occupational Therapist who assessed her strength and coordination and gave us exercises to do at home.

Within ten minutes of being with the Paediatrician, things got weird. He found she had no leg reflexes. He made her do peculiar things like stand still and close her eyes. She couldn't do it without falling. He found a problem with her back that we didn't know existed. And he was really interested in her feet.

The doctor was concerned. I was there to find out if Connie had Dyspraxia. He said he wanted to send her for blood tests, a brain and spine scan, a nerve test and a muscle test. He was going to refer her to Great Ormond Street Childrens Hospital. My world shifted.

You know how doctors don't want to alarm you? They say they just want to rule things out. I was too shocked to ask him what he was looking for. He mentioned that maybe the coordination part of her brain just hadn't grown properly and that was as far as he'd go.

Leaving the doctors with my mind reeling, we then had to go and see a bloody film. I even let her buy actual sweets at the cinema instead of smuggling them in. I just felt so overwhelmingly sorry for her.

The minute she was in bed that night, I set about googling the tests the doctor had done. They had names. Failing them meant one of half a dozen things. So I googled them, one by one. There was this one condition that ticked all the boxes. It was also the worst.

My husband and Dad (my confidantes) wouldn't listen. They didn't understand that I hadn't just been randomly googling, but that I'd googled the specific neurological tests the doctor did. Their response was, ''Don't worry.'' I threw myself into building the wardrobe. It was my therapy but my heart was breaking.

Lots of tests followed and after five months, during which time every other thing had been ruled out, we got the DNA results back and she had tested positive for that one rare and horrible condition.

I'm not going to name the condition here. I don't like saying the word. I also have to protect Connie's privacy. This is a condition which is degenerative, disabling and life shortening. There's no cure and no treatment. It's going in one direction and we have to be careful who we share that with. You guys are fine because you don't know our real names or where we live. You won't find my blog by searching the condition.

Our worlds fell apart. The hardest thing was knowing that we had to make the best of things and be fun parents when fun was the furthest thing from our minds. My husband had a nervous breakdown. He'd buried his head in the sand for months until the very last possible alternative condition was ruled out and he had to face facts. He cried night and day, didn't sleep and couldn't function. I was five months ahead of him emotionally and I was able to get him help.

It's been a difficult time. During the lead up to diagnosis we were looking at secondary schools, not quite knowing if we'd need wheelchair accessibility to be a factor. We applied for schools with the added burden that we had to get this right. Where other kids might put up with a bad time at school and go on to do amazing things with their lives, ours would not. The school situation added insult to injury. We were rejected on Social and Medical grounds TWICE. It was absurd and incredibly distressing.

We've dealt with shitstorm after shitstorm. We found out Connie has a heart condition. We found out that she's likely to be at the severe end of the scale. There was the time one of her friends asked her if she was upset because she was going to die young. (She wasn't aware of that.) The time the Senco at school said they would no longer support our choice of secondary school. The time Connie spent 14 hours in A&E with chest pains. We've had to figure out as we've gone along how much to tell Connie and when. You don't get a manual or counselling with a diagnosis like Connie's.

We're adjusting to a different path. It's not the one we thought we were on but it's Connies path and she's been on it from day one. She was made this way. The future we thought she had was never going to be hers.

We're working through a 'bucket list' of sorts. She's not going to die anytime soon but we have a lot of experiences to squeeze into what will be a short life. And this disease is progressive so she'll never be better than she is today.

It's funny but Connie has never been happier. The diagnosis means none of her inabilities are her fault. People are kinder at school and she gets chosen for things now whereas she never was before. She's ten and ten year olds tend not to dwell on things. She'll just grow up knowing about her condition. From time to time as she grows up, aspects of it will really hit home and cause distress. We have all those teen years to come.

On a practical level, we have to build a downstairs extension for a bedroom and a wet room for when she can no longer get upstairs. We may have to take some walls down too.

I've done nothing to the house, nor picked up a single tool for six months until very recently. I guess it's been like a kind of depression. I haven't wanted to do anything.

As for this blog, I will continue. This won't become a disability blog. We won't be the poster family for this condition. It's not MY condition. I have my support network in place now so I won't be bitching about it on here.

I WILL continue to share the walk in wardrobe and the little built in cupboard I'm just making in the living room. I've enjoyed EVERY MINUTE of that. Apart from the hinges. Hate hinges.

So please bear with me. It's good to be back.

One last thing; somehow I managed to delete my entire blog list. If you've gone missing from my sidebar please let me know and I'll add you again.

Monday 5 September 2016

Walk In Wardrobe Part 2...

Even before the stud wall was built, creating the space for the wardrobe, I was planning its interior.

So many options!

Fabulously girly?

Sleek and modern?

One of those hanging systems?

Er, some of these are clearly ROOMS rather than walk in wardrobes!

All very lovely. But the vibe I'm going for in this house is cottagey. It's not desperately old but the rooms are not generous, the ceilings are not high and the upstairs rooms have sloping walls as they're in the roof, so I can get away with it. The house was devoid of any character whatsoever when we moved in so it's been great to work with a blank canvas in many respects but you also have to work with what you've got.

We aren't going to get away with grand. I have no interest in modern. And too girly isn't fair on the husband. Plus I'm not really a girly girl.

I like old.


A bit of industrial...

But most of all, I want to get this look without spending a fortune and I want to do it all myself.

So let's start with the brick wall. I decided to create one feature wall. I knew I wanted something more substantial than wallpaper so I started investigating Brick Slips.

To get a beautiful brick slip, cut from real reclaimed bricks you are looking at anything from £40 per square metre plus carriage. And they're not light. Or easy to cut.

I found these...

On eBay from NGT DESIGN

No this is not a sponsored post.

The beauty of these brick slips is that they are half the price of real ones, are flexible and easily cut with scissors.

They come in seven different colours and I wondered if I could turn them from this...

into something more like this...

real bricks

So I had a little play with paint and went from this...

To this...

I'll explain how next time. 

But I'll give you a sneaky peak of how it all turned out!

my bricks

I'm in love with my faux brick wall. I can never, ever move house again. Sadly I now have to give away most of my clothes so that they don't obliterate the feature wall in the wardrobe. 
Back soon...

Saturday 13 August 2016

Walk In Wardrobe Part 1...

Things in the master bedroom haven't run as smoothly as I anticipated.

I started to build the stud wall to separate off the end section for the walk in wardrobe. The ceiling has always been bowed in that room but it felt solid enough. I mean, my father in law and I pushed on it and it didn't move so we thought it was fine. The last thing you want to do is take a ceiling down! Ugh, the mess and devastation!

So I started to frame out the wall which was quite tricky when it came to the top. I looked on the Internet to see how to build a stud wall round a bowed ceiling.
That should have been a clue that perhaps this isn't a good idea.

To accommodate the ceiling bow I had to shorten the sides of my stud timbers to get the top sitting level. Then pack out the side gaps.

Parcel tape is the carpenters friend if you are working alone and don't have enough hands!

We got the electrician in to remove the wall light you see above and put a central pendant light in the wardrobe space.

Ta daa! But here's where it all started to go horribly wrong. As I'd had to clear the loft space just above the new light fitting, I thought it would be a good time to board out the loft. We'd done a half arsed job when we moved in but the boards didn't reach the edges so I could gain more storage by doing it properly.

So there I was, toiling away in the loft when I noticed something bad. The loft boards were sliding between the central beam and the ceiling joists below. They are supposed to be tight up to each other. The ceiling was actually dangling in mid air. The boards I had laid looked great but there was a dip in the middle of the floor that you could feel as you walked on it.

We called in a local builder who came highly recommended by a friend. He pushed on the ceiling with one hand and it moved. My husband when up in the loft above and you could see the ceiling bouncing.

Not good.

We decided the best course of action would be to take the ceiling down, insert a new wooden beam, hoist up the joists as much as we could, strengthen them and put in a new ceiling.

This meant emptying the bedroom and the entire side of the loft above. You can imagine the chaos. There was stuff EVERYWHERE.

Not to mention dust and fibre glass...

Here you can see the new beam across the ceiling and the shiny new strapping to pull the joists up.

The new beam is far more substantial than the old one!

It was cemented into a hole in the brickwork at one end and the other end rests on a solid wall that runs down the depth of the house. The new and old beams were bolted together.

We can jump around in the loft now. That's important.

The ceiling went back up...

And then before we could plaster, we decided to replace the window which was an old aluminium frame and very badly fogged. If we replaced the window afterwards, it would bugger up the new plasterwork.

The ceiling works and plastering came to about £1000. The windows (we did the landing one too) came to £1000. This wasn't the worst part. Oh no. There was worse to come.

The builder said he could put up my stud wall in about half an hour. I REALLY wanted to do it. I mean, when am I ever going to get an opportunity to do another one? Never.
But there were things ALL OVER THE HOUSE and I was helping someone out with some childcare so I caved in. For the sake of progress, our sanity and family life I caved.

Rest assured, he put that wall up EXACTLY the way I was going to. But rather faster and without lots of painstaking research into how wide plasterboard is. The builder has all that information in his head as he does this full time.

We also battened out, insulated and recovered that lower end wall as it was very cold. I got the builder to leave the other side of the wall open so that I could reinforce the stud work where I'm going to need extra strength for hanging rails.

So. The room was built. Next was the fun part!

The prettifying! Back soon with that...

Thursday 30 June 2016

Armoire reveal... and why you should avoid oil based paints.

Gosh it's been a while! Is anyone still out there?
We've been through some rather tubulent, uncertain times since we last spoke. And that's just in the master bedroom, let alone our great nation.

I have sooo much to tell you. But first I must get this Armoire post out of the way. I finished it in February so I'm a little slow. I first wrote about it HERE.

I'll remind you how it looked when I found it, unloved and wearing some very bad paintwork.
Despite this, I fell madly in love.

Once I had accepted the fact that I couldn't keep it, (there was no way of getting it round the bend of the stairs) I decided to paint it in off white as white is the best selling colour for bedroom furniture.

I stripped and sanded, strengthened, de-wormed and replaced a missing trim and primed the bare wood. Luckily there was no bleed through so I got away with an ordinary primer.

I decided to use an 'oops' paint, a massive can of oil based eggshell I got for a fiver at my local paint merchants as the tint had gone wrong.

BIG MISTAKE! In the 16 to 24 hours it took to dry, it became a magnet for every airborne cat hair and dust particle I didn't even know I had. I married an OCD hooverer so I thought we were pretty clean. But no. It looked appalling.

I will never, not ever, use oil based paints again.

One good thing about the EU, love them or loathe them; they cleaned up our paints by taking out the toxic chemicals. This has caused problems with your average oil based white gloss yellowing in a matter of months, but the knock on effect has led to superior water based paints.
My kitchen is painted in water based paint. I can scrub it, knock it and it doesn't absorb grease.
My stairs are painted in water based paint. We walk on them. (Okay, they might be slightly trashed but, we have a LOT of furniture changes in this house which leads to more wear and tear than the average home. It would happen had I used oil based gloss too.)

Water based paints are the way forward. I'd certainly go for quality when you can. Ronseal for floor paint, F&B for cupboards, every time for me.

Anyway, lecture over.

A little more sanding, a new paint and hey presto...

It was finished.

All fresh and lovely. And very much stranded in the dining room.

I did some light distressing as this is good for furniture that will be in transit. A little ding here or there won't stand out.

I kept the original hardware as it was so deliciously French...

The wonderfully mottled mirror was taped off as I couldn't remove it...

A new rail replaced the old hooks and my work was done.

By the time it left us, I was actually glad to see it go, not heartbroken  as I'd expected to be. We'd been squeezing past it for over 6 months as it took over the kitchen or dining room. Sometimes love just dies and there's nothing you can do about it.
It was clearly meant for someone else.

Back next time with the master bed/walk in wardrobe work which led to this...

Not great is it?
It was at this stage that I received an email from a journalist wanting to photograph the house for a magazine. Instead of jumping for joy, it just made me very very sad.

One day....