Blah Blah

I am tired (nothing unusual), stressed (again, nothing unusual) and am fighting a cold/cough croup virus thingy. Blah Blah Blah poor me.

It is only 3 weeks until the WHS conference and that means only 2 weeks until we leave for QLD. Do you think I am organised? Errr...that would be a big fat NO.
Seeing as I am taking leave from work at the worst time of the entire year, I am trying to desperately fit in four weeks of work into two weeks. Which loosely translates as working from home on my days and nights off. In amongst that I have to organise accommodation for our trip up to Tweed Heads (mostly all done, just a couple more nights to go) and as an added stress, I have to organise respite so that Ryley can be taken care of while we attend the conference. I have found that process to be quite difficult and it is STILL not finalised, as I am battling to get a hold of the worker.
*SIGH*
You know, it really is all too hard. As sad as it is, I am not sure we will do this again. It has been really stressful having to organise a carer for Ryley. He has to have a Registered Nurse take care of him because of his uncontrolled epilepsy and PEG feeds. Unfortunately, we don't have anyone who could care for him, which is why we have to organise a stranger and for the government to pay for it. It is going to cost us loads of money to go up to QLD, which would be better spent on other things, like a holiday closer to home.
But we are looking forward to going. It will be great to see our "other" family again and all of our friends. And I know we will have a great time. Just so much to organise...

Last week I had a meeting with the FSO team leader and a student to discuss service options and what was avaliable. No matter how often you go through your story, sometimes it still is amazing when it is written down on paper just how much your life is so very different from everyone elses. On paper, Ryley is so very severe. We don't see him like that because, well, he is just who he is. There were so many times that the workers were just speechless and didn't quite know what to say. One of the things that really struck me as something I haven't thought about, is what would happen to Ryley if David and I died. We don't have a will, though even if we did, we would have no one we could leave Ryley in the care of. He would end up a ward of the state and would end up in a community care facility (unless there was some family out there who would take him in-though that is about a 1% chance of happening). How crap is that? Braeden would end up ward of the state too, but at least would have the opportunity to enter into foster care and end up, hopefully, with a permanent care family, though he wouldn't be able to have contact with Ryley until he was old enough to seek him out.
What an eye opener. Something we now need to start thinking about.
Blah.

On a more positive note, Braeden used the potty for the first time this week. Clever bugger. Ryley also signed and requested 'blocks' (his own version) which is very exciting!!

Comments

  1. Such huge things to be thinking about. We don't have a will and haven't planned for anything like that either - I am just hoping to live for a REALLY long time (my Grandpa nearly made it to 102...that would be good!).

    ReplyDelete
  2. Anna, your fantastic and I hope it all comes together for you xxx

    ReplyDelete
  3. No way in hell mate would Ryley or Braeden end up ward of the state.I would do all I could.I would jump through hoops to have the boys live with us if there was no other option.They are all ready like family to us and mean the world to all us here. Luv the
    Wheeler crew
    xxx

    ReplyDelete

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