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.