Special Disability Trust

We have spent a couple of days investigating Special Disability Trusts. To summarise our findings of them:

They cost a fortune to set up, they are a pain to maintain, the tax law surrounding them is a obscene and they are ridiculously limited in what they can be used for. They are rubbish!

Apparently there are four public servants managing it and there are currently only 10 such trusts set up in Australia.

I am not asking for much. I just want to give some money to my disabled child to ensure that his future is financially secure. But if I do then social security don't recognise that I have done so and the tax office will take the lions share of what I put in.

Mama

Normally I don't talk about things other than Raphael in this blog but I will make an exception for this.

My mother-in-law (Mama) was in a car accident shortly after 2:00pm on Monday 12/5/2008 (the day after mother's day). Annie and I were attending a future planning day for children with disabilities and Mama was getting ready to run some errands and then pick up our daughter from school. It is not known exactly what happened but somehow her unpowered car came loose in her driveway and she probably tried to stop the car which ultimately resulted in her becoming crushed between the car and the house.

Mama was rushed to hospital and we found out about the accident at about 5:00pm when we got home from the planning day. We rushed into hospital only to find out that we had just missed her. She had been taken into surgery with severe internal injuries and a few broken bones. I rushed back home to arrange babysitting for the kids and the hospital kindly agreed to look after Raphael for the night as he was only just out of hospital and our babysitter was not trained to handle the CPAP machine. After I made it back into hospital to be with Annie, I found her talking with the surgeon who had said that they had done all they could and now they just had to hope that her liver would stop bleeding. We went back to waiting but it was only a few short hours with praying before we were told that she had died.

Annie was Mama's only child and they had a very special bond with each other. Mama also provided us with invaluable help by babysitting our other kids while we took Raphael to appointments. The news was a big shock to us and Annie took it particularly badly. Mama was also the sole carer for an elderly veteran who was a close family friend and her passing means that we inherit the responsibility of care. He has no family who can help him and he has been like a father to Annie in Australia. To our children he is uncle Max, he is the only honorary-family-member that we have.

Max has just sold his house that he and Mama lived in and has bought a new house close to where we lived so they could see more of the children and so that we could help each other more. the new house is in the middle of being renovated and Mama has packed up most of the old house but there is still a lot that needs to be done and Annie and I will have to do that because Max is not able to this for himself.

Mama leaves a memory of generosity and kindness but she will also be remembered for her furious rage that would boil over occasionally. The only reason that I mention this is that the time of her accident matched up with the awful earthquake in southern China on that same day. Her anger could be so enormous that I would not be surprised if her raw anger over the accident was a catalyst for this natural disaster.

The photo here is was when she was about 40 and was her favourite photo of herself.

We will miss her.

in hospital again

Raphael went in to have his pre-assessment on 8/5/2008 for his upcoming adenotonsillectomy but as he was getting quite sick we took him around to the PACU area to squeeze in to see a doctor to see what they thought about him. Shipping him back and forth between PACU and the pre-assessment area when doctors were ready to see him filled our day.

I felt a bit guilty about turning up to the packed clinic times with people over flowing in the waiting area only to push in line to see the poor overworked registrar. When I told the registrar that I suspected that an x-ray will probably reveal a pneumonia she said "I think that you should really present to DEM (Eepartment of Emergency Medicine)". I responded with a cheeky "Yes but that will take us ages and you are supposed to make special exceptions for people like us (with complicated children)". She took pity and organised a queue jumping x-ray for us which of course revealed a pneumonia.

This wrecked his chances of having the adenotonsillectomy surgery any time soon and instead landed him in hospital for observation for a couple of days. He was discharged on 10/5/2008.

Everyday appointments

This last month has been very hectic with appointments every day. I have been going to a "magic with music" course to help with Raphael's speech amongst other appointments. I have not had time to have a good scratch and so that is why I have not blogged much lately.