I’m guessing you took a deep breath, and then tried to answer that question.
But instead of putting meaning to the word you stopped breathing for a second, looked sideways whilst your brain scrambled trying to compute the definition.
Or maybe you have a clear cut defintion?
I think we all think we know what normal is, right up until we try to put into words…
What’s become our everyday life, has become our norm, and there’s nothing normal about it.
Our days never seem to end, they pick up right where they left off and they repeat themselves over and over and over again.
Same problem> different defintion> different solution> same outcome….
Nothing is ever completely finished, and if it almost is, it’s replaced by a new task more or less straight away.
Take for example the extention to our house.
We’ve grown so sick of talking about it, what should be an exciting experience is no longer a joy.
There’s been nothing normal about the process what so ever.
If I’ve ever worked hard, it’s been getting this project running.
I’ve never met so many obstacles, hiccups or problems along the way as I have with this project.
Fair to say we chose the wrong architects, but then again I’m certain we could’ve chosen worse!
The amount of mistakes they made, and the following up we’ve had to do because of them, they should of been paying us!
And then the council, who’s taken the best part of 2 years to grant us a building permit, despite the fact that the extention has a medical neccesity behind it.
If it wasn’t for Jennifer, we’d have given up long ago….
Someone once told me “ If it’s important enough you’ll find a way, if it’s not, you’ll find an excuse”
There are times when I wonder if it’s only Odrun and I that understand the seriousness of our situation, and the consequences that can follow if our house isn’t ready before Jennifer grows too large.
Sure she may not be heavy yet, but try placing her 100cm plus long stiff body through the doorways or on a changing table , in a bed or carrying equipment down the stairs into the car….
They’re the most awkward positions we could put our bodies in, and Jennifer’s not exactly comfortable either.
Jennifer’s longevity circles around many factors, one of which is having the correct equipment at the correct time to help prevent her body becoming deformed beyond recognition.
Another is keeping her occupied within her own house.
She’s social, she energetic within reason and she demands attention and stimulation.
We’re not able to provide that in our house until it’s been improved.
We’re not able to care for our child in the manner that she requires, or deserves for that matter, and that in itself is puts an enormous amount of pressure on us everyday…
The builders are ready now, and we were going to begin a few weeks ago.
Right up until the company doing the road and sewage works decided to leave a massive gaping hole right next to our building site…
They then left on holidays, unfinished and with no remourse what so ever..
We’ve managed to get the ground works done, but no-one wants to work next to a 3 meter deep hole.
But this has become our norm, explaining our situation and ultimately having it fall on deaf ears….
Cause who cares right?
Doesn’t matter if Jennifer has to wait another 6 months for her inner walker, her changing table or her new bath…
Doesn’t matter if she becomes a little more crooked in her left hip and requires yet another operation…
We fight what seems like a losing battle daily, but we never give up.
How can we?
Nothing’s more important than our children, just like nothing’s more important than your children….
Just that one of ours has a need as far from normal as the definition itself.
In the never-ending line of things to fix, the house gets its turn.
Universal living, or design for everyone.
We’ve had these drawings more or less ready since November.
But as our house is in the middle of an area which will become a new estate very soon, we’ve had a few delays along the way.
We tried to change the drive in from the new road that will be built, and when dealing with larger companies things don’t always go quickly.
On the other hand, they were understanding and did offer their time.
We came to an agreement in the end, which will allow us space for our new bus next year.
This week, finally, the drawings go into the council for approval.
And to make things worse, we need an exemption from them because of the area we will need to park our bus, I mean car, when we get it.
No time limit on the processing time for approvals requiring exemptions!
This should be fun!
The demands being put forward by councils are getting larger, because the need for houses that are designed for wheelchair users is large.
And the amount of houses that are actually designed for wheelchairs users?
Very very few!
Look around, how many houses do you drive past that actually have a ramp?
Is that because wheelchair users usually live in a nursing home? Or institution?
No, it’s because universal living was never a priority for people living at home.
I guess, if you used a wheelchair you were considered sick.
Not always the case.
And it doesn’t stop there.
Public places can very anti wheelchair.
Next time you walk into a shop, or cinema or hotel or any other public place, take a look.
Can you manoveur a wheelchair in there?
Would you even get it to or in the front door?
People have gotten by, but they’ve struggled, and they’ve struggled on top of everything else they have to deal with.
They’ve been naively cast out by society.
I’ve said it before, you don’t understand anything fully until you yourself have to go through it.
And we judge so ignorantly the people who only want to be included.
People have arranged their houses themselves and others probably haven’t even bothered.
Our house is as good as it gets when thinking about the possibility of making it into a universally formed house.
All the necessary rooms are on one level, we just need to make some of them bigger.
The demands are hard to meet, the turning radius for a wheel chair needs to be 1.6m, and that’s from the furniture not the walls.
Ramps must have an incline of 1:20…..which means if you have a difference of 1 meter between the ground and the front door you ramp must be 20 meters long……
Bathrooms need lifting equipment and entries need room enough for 2 wheelchairs.
Door openings need to be 1m wide!
All this while trying to keep your house a home.
When we started designing the extension for Jennifer, we were sceptical.
How much will this cost us, and how much can we afford?
Jennifer needed a bigger bedroom, and she needed her own bathroom.
Shes needs her own entry and a place outside, away from the wind.
When Jennifer grows older, it’s inevitable that we will spend most of our spare time at home.
As much help as we get, it’s just not possible to visit everywhere and everyone.
Look around your house……
Can you fit a wheelchair through the front door?
Sure the door opening may be wide enough but a wheelchair is not a 4wd remember! It can’t get over the thresholds.
Can a wheelchair be placed near your dining table? Can a wheelchair user use your bathroom?
My guess is that 99% of you are saying no, to at least 2 of those questions if not all of them.
There’s certainly nothing spectacular about our house, it’s fairly bland to say the least.
But it’s practical, in every sense.
We knew when we bought this house we’d have to do some work in the near future, we just didn’t know how much we would have to do.
It boiled down to the simple fact that we will spend a lot of time at home, and that many advised us “If you’re going to extend your house, extend it big enough the first time!”
We took onboard that advice, and did what we think suits us best.
We’ll extend Jennifer’s room by 2 meters, making it twice as big, she’ll have her own 10m2 bathroom and she’ll have her own entrance and an undercover/wind protected play area outside.
In addition to Jennifer’s section of the house we’ll build a TV room/guest room downstairs together with a toilet and a storage room.
In total we’ll extend the house 5 meters, upstairs and downstairs.
In Norway nothing is cheap, and almost half of everything you buy goes directly to the government in some form of tax.
A mate once joked to me “You need to take out a second mortgage to go the pub in Norway”
In most countries, insurance may cover some of the costs of extending your house for your wheelchair user.
We can’t get Jennifer insured here, but we did find a section of our house insurance that covers building for a wheelchair user.
We also applied for a grant from the local council, who is granted a yearly lump sum from the federal government for the exact purpose, helping people who need to facilitate their houses for wheelchair users due to sudden illnesses or accidents.
Children are prioritised.
It’s in the governments best interest to ensure houses are made for the future, if they weren’t, the government would have to house these individuals wouldn’t they?
The regulations for the new estate actually state that 30% of all house built on the estate are to be built for universal living.
Nothing is flat in this country, and it just makes it all the harder to facilitate your house.
We have a budget of 1 million kroner for our 70 m2 extension , or approx $170,000 US.
Told you it was expensive here.
You could almost build a house in a lot of 1st world countries for that kind of money, spare the land of course.
If we’re lucky we’ll be finished by Christmas.
If we’re not, we’ll be patiently ringing the council for the next 6 months!
In life, there is abundance in everything if we are open to see and receive it. This is my abundant journey raising two "healthy" children and a son with cerebral palsy. This is what my son is here to teach... acceptance and the true importance of life.