Monday, 5 March 2012

What a weekend!!

Wow, so much has happened the last few days. I will work backwards.

Sunday - I had said that I would do the Queensland Muscular Dystrophy's walk this year, which kicks off Bow Tie Week. Like normal, when I do these things I automatically enrol the family in as well. Headed off to the city at 9am, to get to the corner of Elizabeth and Edward to meet some friends. While waiting, I took advantage of the time to take photos of buildings I use to work in and the changes.

Just after 10am and no one being there, I started to walk towards the Botanic Gardens. My phone rang and Colleen, who I wasn't expecting, had turned up on the corner. We waved at each other from a couple of blocks away.... wonder how many thought we were waving at them lol.

After meeting up with everyone, getting T-shirt, placards, etc we all set off. Colleen and I decided to bring up the rear... really an excuse to talk the whole time. I was proud of myself, as the walk was longer than I expected. We went from the gardens along Albert St, up to the top of the mall, down to the other end, back up to the top to the Albert St exit and back to the gardens.

A short while afterwards, Colleen and I walked back to the mall to have lunch. Boy that walk back, felt twice as long as when we went there lol. Lunch was great, although having had a fill recently, holding a bit of fluid and doing the walk, all contributed to my band being extremely tight. I had food stuck and even having a drink, didn't move it - the drink sat on top backing up - so contributed to a couple of fast trips to the bathroom. Sometimes I really hate the band!

But as normal, I had a fantastic time on the walk and with Colleen (which is always the case).

Saturday - Jamie Oliver! I was up early, hair and makeup done and ready to go. We were told to be there before 12, but when we got there, they didn't want us until then. Firstly we were taken into the old library building. Here we were given our recipe and a sheet of do and donuts. Some photos were taken and just as we finished these, someone came in saying that Peter Fitzsimons wanted his photo with us. I don't think this was true. He came in not looking very impressed, spoke to no one and then pulled up a chair and sat with a sulky look on his face.

One of the Ministry of Food workers came in and told us that we had another 5 mins or so still to go and if we wanted to use to the loo or anything to do it now. Well guess where Kerrie was when they all went out - yep in the loo lol. I made a quick dash out, hoping that no one noticed me, but that all went out the window when Jade calls out (and I am sure egged on by Veronica) 'Oi Mum'. A quick wave then onto business.

Jamie came out and was his usual energizer bunny self. Then instead of the relaxed cooking class I was expecting, it was a rush and catch up with Jamie and me being in a fluster. We cooked Chicken Fajitas, which were beautiful tasting. I do know that at one time he stopped in front of mine and loudly proclaimed "lovely" - which Ryan, who watched it on the net, and Jade, are having so much fun imitating.

When it was over, we got our prize packs, which contained his knife set, an apron and his ministry of food book. All up around $200 worth. We had been told that he would be seeing all the winners when he finished with the public, but that didn't happen. Was a bit disappointing not to meet him and get the book signed.

All in all a great day and was happy to share it with Jade and Veronica and to get to see Beth and Janelle again after so many years.

Here I am going to go back and forth between Thursday and Friday. Some people might find the next bit of writing hard to handle, but this is my life, warts and all. Its about what I am going through. As a person, only a couple of close friends know what I don't want to portray to those that see the 'public' me. You are going to see that me now.

We have been fighting for ages to get help to look after Ryan. Most days I am in pain, although I have had a run of 3 or 4 days with no pain lately. Peter has to do all the heavy caring with Ryan and has to do some things for me as well. I do feeding, moving arms/legs, daytime toileting. I also stay up late and do some rolling, so Peter can sleep but then have to do it when Peter leaves for work on the news agency mornings.

It is all taking its toll on our bodies and our marriage. Ryan knows this, we are very open about everything with him, but he can see for himself. So we have been everywhere asking for help. Some agencies say they will contact you back, but don't.

Anyway last Thursday, we got a call from DSQ. Asking for more information on what we were after etc. He said he would call the next day. He did and came to see us. We told him that as Ryan has been getting worse, we have had less help. I told him about the effects it was having on us all and that I had even had been thinking of relinquishing care. As I said to him, we aren't asking for much - a couple of hours a fortnight to help. He then asked if I wanted him to put in that we were going to relinquish care and I said yes.

He then pulls out our plan with them. There were all these amounts on it for things we haven't been accessing. Money to pay for carers to go out with Ryan - we had been paying for this out of our own pockets - carers approved for 2 hours a night, 4 nights a week by 52 weeks a year. He asked why we weren't using the extra hours that built up when Ryan went into respite. I told him that we knew nothing about any of this. We had always been told we had to stay under budget and everything had been cut back. So it seems that all this time there was extra help there, but we kept getting fobbed off and no one told us.

We ended up, with him saying he would check and make sure that what he told us was correct. I contacted him later on to say that we would hold off on putting in about relinquishing Ryan and see what the outcome is with this other lot of stuff he found and how we coped with it.

On Sunday I received an email from Anna Bligh's offsider. It appears that we were contacted by DSQ due to my email that I sent out to all the pollies asking about their policies for the upcoming election, not because of phone calls and emails I had been sending asking for help.

Got an email today from DSQ saying they couldn't contact our service provider for info that is needed. So fingers crossed that tomorrow we will hear something. Its not easy to say you can't look after your child. But we want the best care for him. Fingers crossed that we can get the extra help we need. As one of our support workers said to me 'why do some get heaps of help and others not enough'. Out of our pockets we pay for a carer to take Ryan out, we also shell out for the overnight care that we get, although at a reduced rate.

Anyway, end of subject for now. Not something I want to dwell on. I will update the outcome to this when it happens.