Saturday, February 7, 2009

The never ending battle that comes with having a disablity!

This is our latest battle. It's not an easy journey having a child with major disabilities. We love Jess and no-one would ever question that and we have had 19 years of many hospital visits, many doctors, physios, OTs - and lots of tears and she has endured many operations and lots of pain. But above all that she is such a lovely girl with a wicked sense of humour (mostly toilet humour!). I could go on forever about it but I won't.

As she is now over 60kg it was time to bite the bullet and look into having our car modified. It's a KIA Carnival and at present John lifts her in and out of the car 4 times a day at the least. To have the floor dropped etc enabling us to wheel her into the car costs $25,000!! The bloody car is not even worth that much! So we thought there must be another option...which we've found and it's a hydrolic hoist for the passenger which is brilliant and can be taken out when we sell the car - which is even better. Well of course it came in at $10,000! and we have to go to Melbourne to have it fitted. The Australian Govt. and it's bloody giving everything away at the moment and they don't fund things like this...people are stunned when I say - no there's no funding for car modifications etc. It just shits me to tears when we both work our guts out and still have nothing to show for it. Apparently if we lived in Sweden we would be given a wheelchair accessible vehicle and all the equipment we ever need!

Then we looked into getting a portable hoist for the home - yep - another $3000!

And then just to top things off the Air conditioning in the bedroom end of the house has S**t itself ! We got a quote for that too and really we've been putting that off too because we knew it would cost a fair bit....and you know we do have a mortgage etc......yep it's going to be another $10,000!!! Apparently we have to have special power put on the house that will cost $2500.

I know I'm raving on but it feels good just to dump it all on my blog!

Anyway - there is a happy ending to this story. My dear friend Kirrilly (whose blog is linked to mine if you want to see what she's up to) - has decided to do a fundraiser for Jess. I was totally blindsided and gobsmacked and may I say "lost for words" when she ran it buy me. That is just the coolest thing anyone has ever done for us. She's one of these people that sees someone has a problem and will find a way to help no matter what. She is probably sick of listening to me whinging as we do share the same office so this may be her way of shutting me the F##k up!!

So - we are going to get an extension on our already rather sizeable loan for the air con and see how Kill goes in the fundraising and hopefully get these hoists.

If she goes really, really well we will even lash out and get one for the pool - wouldn't that be awesome!!


Melanie said...

I can never believe that in Australia people are put in situations like yours. There are always fundraisers like the one being arranged for your daughter in our area for families in similar circumstances and thankfully, they are usually very successful. How can we lobby our governments to help people in your situation. Imagine how much it would cost the government if you chose to institutionalise your daughter? You should get everything you need.

Sue H said...

I read your blog last night at work, however before I could respond I was called away - bugger those mothers and babies (only joking). My first reaction to your blog was utter disbelief. What pencil pusher make the rules!!!. I bet it is someone who has never had to care for a person with a disability or someone in need of that little bit of assistance. But.... I know you and you will not rest until all that could be possibly done is done. The Kath I know is like a dog with a bone.

Thank you Kirrilly for organising the fundraiser. There is no-one more deserving than Kath and John - it's been a bit of a struggle for them over the years but I can honestly say that Jess and Caity are the love of their lives and they wouldn't change anything. Unfortunately some of Kath's friends are not local, but please put the call out if there is anything you need and I know that I and other bloggers will help where we can.

Kath - to you all our continued love and support.

Kill said...

Kath - just trying to repay all the sage advice I get from you - you rarely whinge about YOUR life! You seem much more concerned about the issues your friends are facing, and just accept that you will need to take out more loans to get by. You are a trooper - I just hope we can help out a bit.

mjwdec73 said...

I'm horrified that there is no government support for you with Jess. I would much rather that the taxes I paid went to help you out with Jess than paying another 7 tiers of bureaucrats.

You have wonderful friends - but you do deserve them.