A car and ferry trip to Bergen for a course with parents in similar positions as us about learning to cope as a parent of disabled child.
Almost 4 hours alone, for 4 days, I don’t think we’ve had that since before Jennifer was born…..
Finding out that we’re not alone, discussing our children, for some maybe opening up for the first time to complete strangers, for others a wealth of information.
A definite sense of comfort, here was people we could relate to.
Here was people who understood us, and we understood them.
I’m pretty sure we could have talked and shared experiences for a week, as always time is your enemy.
Similar questions with similar goals, similar fears and similar frustrations.
Learning to cope is not just about the disabled child, it’s about the disabled childs relatives, their siblings, their parents, their doctors, their therapists, their council, their social security and last but not least their society……
A complex mirror, but yet still a mirror.
One side reflects what society see’s, the other side is dark, rarely seen, and nobody knows why or what it does.
Someone said to us about a year ago, you need to take care of yourselves, and don’t be dependent on others to fix all of your problems.
Our new house!
As close to universal living as we could find.
When we decided to move, we followed the market in Bergen for about 6 months before we actively went out and tried to buy.
We had 2 options, find a house that is on one level, or buy a small apartment we could live in for a few years and build a house that suited Jennifer.
Lucky for us, this house suits all our immediate needs.
There’s a flat car parking area, easy access to the front door, easy to build a ramp if required, 3 bedrooms, kitchen,bathroom and living area all upstairs.
Downstairs there’s an apartment, the council hasn’t got approved plans of downstairs arrangement so we need to get that fixed.
There’s some floor coverings and a stair case needed, kitchen needs some work and there’s no garden….but for us that just means being able to fix it how we like it.
All things considered, we were happy to take on the work.
Finding a house that suits Jennifer’s long term needs was not easy, I don’t even think we found one in all the months we were looking.
250,000 nok or 42,000US under the asking price, if we have to use that much to fix it up a little I still think we’ve got a lot for our money. Even if we have to use double that, we still wouldn’t reach 4 million kroner, and a house of that size in Bergen for under 4 million is as rare as a blue moon.
We bid on apartments and townhouses prior to buying this house that were just as, if not more expensive, and half the size.
For us this a house we can live in until the girls grow up and move out, and if Jennifer needs looking after, she could live downstairs.
For us this house was perfect, and affordable.
It allows us to take care of ourselves, without too much dependency on the government to adapt the house for Jennifer’s needs.
Sure, there’ll always be the need for adaptation, but they should be minor with this house.
No more driving over 2 hours to the hospital, more specialists within arms length, more activities for Emma, less stress for Odrun and I, more time as a family.
We sold our house in Stord on the first home open, and are really happy with that.
In Norway, it’s like an auction, the home open is scheduled and all bids are placed the next morning with a minimum acceptance time of 12 oclock. The bidders then try to out bid each other, if there is more than one of course.
The bidding on our house started well, but declined fairly quickly once the asking price was reached.
If you asked me a year ago how we were coping I probably would of said:
“the world is spinning way too fast, we can’t slow it down, our future has never been more uncertain, we have a child of whom we have no idea how she’ll turn out, we have no idea who is supposed to be helping us , when and what they should help us with, and where in hell is the person that should fix all these problems, and where is the person that will fix Jennifer?????.”
Truth is no one can fix Jennifer, we can only help her, and we needed to learn to cope with a new everday life.
Putting a hospital within 15mins of our house is our way of coping, our way of looking after ourselves and our family, our way of dealing with our new everyday life.
If you think that as Jennifer grows up things will stabilise, think again!!
Her problems are only just beginning.
Despite the misunderstandings and the criticism that comes with them we’re slowly finding a way to cope with this new life……