Sunday, October 23, 2011

A night out you say?

Yes Yes.
It is an extremely rare event. But last night we had our 2ND night out together for the entire year.
Oh imagine our excitement.

We were extremely excited, because we were attending the Official Launch of 4p Aussie Kidz.
You can go here: to find out more.
Or you can visit the blog here: to meet Ellie and her parents Mel and Luke.

It was a great night, made greater because we won the slide we wanted in the auction.
Mel and Luke did a great job and it is great to see their dreams coming true.

I didn't get too many photos because my camera sux (I really need a fancy one). But the lovely Liv had her awesome camera and took a couple of us and our poster boys.

Liv took a better photo than this (which is my dodgy one), but for some reason I can't get it on the blog.
PS. Conference in less than 3 weeks..EEK!!

Wednesday, October 19, 2011

Carer's Week-Again

So, last year I posted during Carer's week and posed the question: Who cares about the Carer's? I received lots of emails and messages in response to it.

Here in Victoria we are currently 'celebrating' Carer's week. Which basically means we all give ourselves a pat on the back or a 'hi-five' for being so wonderful.


I think I found one event happening here in Ballarat. And that was it.

There has hardly been any mention of it. Anywhere.

So my questions remains. Except this time I am adding a word or two to it: Who the bloody hell cares about Carer's?

Well, the government does of course. We save them 40.3 billion every single year by taking care of our loved ones ourselves. They do gives us $110 a fortnight in return to help us out. So WOW. That is awesome.

Many people will use their words and express that Carer's do an amazing job. Uh-huh. Yet that is usually the extent of their support. A few words dropped here and there. Ok. Cool. Thanks.

I think the reality is that most people are just glad it isn't them. It is easier to just ignore Carers and figure someone else is probably helping them-or worse-that they are 'so strong' they don't need anyone.
Most Carer's would love more support.
They would jump at the opportunity to have someone help out every now and then. To actually offer and not just wait for the Carer to ask.

Money would be bloody awesome too if you are listening government. Because having to beg all the time for money just to have basic stuff is really not cool.

So this Carer's week, if you know someone who is a Carer, instead of giving them a pat on the back, do what Carer's Victoria are suggesting and buy them a coffee (that would work for me...!!).

In all seriousness, at the end of the day, being a Carer, as well as a parent, is who I am. It is bloody hard work (especially when child who is being cared for vomits most nights in the middle of the night). But I will do it with love and strength for the rest of my life. With or without extra money from the government. With or without respite. With or without anyone caring.

I care about Carer's. I know so many wonderful people who are Carer's. Exhaustion may be their current state, but they are all the most generous and loving people I am priviledged to know.

So do you care about Carer's? How do you show it? Is it a phone call or message every now and then to see how they are? Is it a catch up for a cuppa every now and then? Is it just saying you are there if you need them? I reckon if you do that, then you DO care about Carer's!

Thursday, October 13, 2011

Fluffy fluff fluff

Those that know me very very very well, will know that this is my absolute favourite movie of all time (and Wuthering Heights too).
I pretty much know the movie word for word.
I have pretty much been waiting for years for it to come out on DVD as my well loved VCR copy really was just not the same.
So given that it came out today, guess what I went out and bought??
Braeden is currently glued to it.
Ryley never really liked it that much (how disappointed was I??!).
So now all my hopes are focussed on Braeden.
He better love it as much as me.
Bad luck I guess if he doesn't. Because guess what we are watching on repeat from now on???

There are SO many great lines in the movie:
"Cheaters never prosper" (why thankyou for your wise words Zazu)
"Hakuna Matata-it means no worries, for the rest of your days" (Oh if only you were right Timon and Pumbaa).
"Hippity Hop all the way to the birdy boiler" (Oh you hyenas...gimme one of those boilers please)

You get my drift.

Monday, October 10, 2011

Why do I blog?

I have been thinking about this question lately (despite my lack of blogging). I don't know if I have ever written a post specifically on why I blog.
My blog will never be one of the 'popular' blogs. I doubt I will ever have 1000 followers (I doubt I will ever have 100). And that is mostly because I work nearly fulltime and the only real time I have to write is at the end of the day, and to be honest, I would rather just watch tv, go for a run, or read a book. I don't have the time to dedicate to it. Though sometimes I wish I did.

So who should read this blog?
I am tipping that most people who read the blog have a child or adult with Wolf-Hirschhorn Syndrome. Then there might be some other readers out there who have a child with a disability and sometimes like to read my thoughts on disability related stuff.
Then I guess there are people who know me in real life and like to stalk keep up with me.
And I guess occasionally my friends and family members have a read to see what we are up to.

Am I some kind of expert?
Far from it.

The real reason I blog is for my boys.
One day I hope Braeden can spend time reading this.
He might at some stage doubt how much I love him and how proud I am of him (I do tell him everyday-but teenagers and all that-ya never know).
But I also hope Braeden can one day say he was proud of our family. That geez our life wasn't exactly 'normal', but it was still pretty good.

I also blog for Ryley. So that one day, when he is grown up and his time on earth is getting close to the end, I can read this blog to him. Remind him of his life. Remind him too, how much I love him and am proud of him.
Remind him that life was always about living.

If something I write helps someone else in some way, then that is just a bonus.
Writing is what I do.

Sunday, October 9, 2011

Birthday parties, house hunting and other random stuff

First post for October and we are nearly in the middle of it.
According to my statcounter there are still the occasional reader who pops by.
So thanks for that!

I just don't have the time to blog right now. Which I hate of course. But you all know the reason why I am a little absent from the blogging world right now, so I won't harp on about it.

So what's been happening in our neck of the woods?
Well, lot's of stuff.
It has been the final week of school hols this week, and I got to work the whole week. At first I thought "what a bonus, I don't have to do anything", but that very quickly changed to "geez I wish I could stay home".
Grass is always bloody greener isn't it??

Ryley and Braeden had two of their cousins stay and all the kids had a great time! We went out for tea to Pizza Hut, because really, 3 hungry boys (Ryley-not quite so hungry for pizza) and all you can eat, just go hand in hand I believe.
David took all the boys fishing during the day while I trudged off to work.
Someone has to be the breadwinner I guess.
Seriously though, it was lots of fun and we look forward to having them again another time.

Ryley had a birthday party yesterday for one of his school friends.
For the long time readers of this blog, you will know that I don't particularly like birthday parties. I find them quite hard, particularly when I don't know a single person. Ryley is always the kid with the physical disability whose Mum has to help him participate. He then sometimes gets treated like a baby by other kids and the other parents either feel sorry for me, or ignore me.
Now, Ryley has only ever been invited to two school parties in his 6 years at school.
Which I don't mind at all.
This one was the second one and when Ryley vomited just before it was time to go, I had to admit I felt a bit relieved that maybe I had an excuse not to go.
But when I asked him if he wanted to go, he got up and headed for the door.
So we went.
It was an interesting party.
Most of the kids there were from Ryley's class, so they all knew each other and were clearly really good mates.
I tried my best to just let Ryley be and only helped him when he needed it (like when he got knocked over when on the dancefloor).
Ryley of course had an absolute ball!!
But the thing that I found really strange was that hardly any other parents were there. They just left their child with a disability there, in the care of strangers.
One kid did try and escape many a time, and if I hadn't been keeping an eye on him he would have been gone and we would have had a search party out in the streets of Ballarat.
I just don't get it.
I can understand why some of the higher functioning kids were left. They could at least talk I guess.
Ryley really enjoyed himself and as always I am really glad we went.

So what else in the life of us?
We have been house hunting/dreaming lately about finally moving out of town and onto some property. We have a couple of properties on our shortlist and now all we have to do is finish our house and get it ready for sale.
The question remains of course whether we can actually do it or not.
We love our house.
We love where we live.
Everything here is so convenient.
Moving out of town would mean we could have our hobby farm which is what our heart is telling us we need to do. But our heads are very busy telling us that we have it waay to good here.
Who knows.
Maybe when I win tattslotto, I can just have it all.

In the meantime I have been busy planting all my vegies and we are going to have a bumper crop of spuds again. Our celery is going crazy too which is good. It is the first time we have grown it, so nice to know we can actually grow it.

What else?

Braeden is learning how to write his name. He signs all his pictures now with the letter B.
Ryley's ankle has fully recovered finally and he has actually lost a bit of weight.

This long post has no just made up for the last however many days of not posting.


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