It has been a while since I wrote, well just over 3 months, but it feels like 3 years with so much happening, but that will come later.
I never want people to feel sorry for me. What I do want is friends who don't care if I vent and that can vent to me, knowing that I don't mind. Mostly I vent via facebook. It is my communication to the outside world.
If you think about how you vent, you may find it is to people you work with or see during the course of the week. Due to me not working (and yes I have been feeling worthless lately due to not working), I don't get to see many friends. In fact since the 7th October, I have seen three, face to face. No big deal, as everyone is busy with their own lives and we are not always free at the same time. This is just to show why I use facebook as my outlet to vent. Most of the people on it, except for a couple that I play games against, are all friends.
One thing I have noticed over the past couple of months, is that when I put up a status, within 5 mins, there have been comments posted on friends pages that seem to be pointed at me. At first I thought that I might be reading something into it that wasn't there, but it seems to happen nearly all the time.
Due to this, you will have noticed that I haven't put up much of anything. Everyone has different things to cope with and at different levels. It doesn't mean that any one person is worse off than anyone else. With me, writing it down, is my way of letting go and not dwelling on it. It is also the way that close friends know what is going on and I can get support just by knowing that they understand what is happening, even if we don't see each other.
Now having said that, I am going to put here all that has happened and if you don't like it, tough shit.
It all started with having an xray on my foot. Yes I told people about it, but didn't say the things that the radiologist said it might be. So scared shitless until I saw the orthopaedic surgeon and had the mri to find out it was arthritis. Plan of action, get orthotics made and if that doesn't work, then surgery to fuse the bones together in my foot.
No sooner had this been organized, then I was back seem him again and having another mri on my wrist. I thought just a ganglion but no, it was that plus Teninosis, which meant it had to be aspirated and a cortisone injection. This gave relief for a couple of weeks, but the pain is back, waking me at night. So I have to make an appointment to go back, as the orthopaedic surgeon said if it didn't last longer than a month, then it would have to be operated on to fix it.
I had the above mri, on the day after the high tea fundraiser. While the high tea was a success, it was a lot of work and anyone that knows me, knows I throw my whole self into it. Until it was pointed out on the day, while pouring coffee, my hands were shaking. By the time I sat down, my feet felt like concrete blocks and I couldn't really move them properly.
The next day and the Monday saw me lose control of my bowels. So another mri, as they thought I would have to have surgery immediately. Jan drove me to the Wesley and I am glad she did. I was in a bit of a daze with it all and it was good to have someone else there to hear what was said and to relay it.
It probably took nearly a week for it to come good, then I had to see the specialist again at the Wesley, who talked about pain relief by injections in my spine, which I rejected and also to see a rheumatologist to see if there is an underlying cause to the changes in my body.
The day prior to seeing him and Ryan's birthday, I got a call from Ryan's thoracic specialist, saying that readings from Ryan's latest home sleep study were all over the place and he wanted him in either the next day or the one after. Due to so much happening those two days, I told him no and when Ryan comes back he would come in. An appointment was made for the Tuesday.
Again more worry as to what was happening and I don't think I told anyone. Thankfully it was that his ventilator was playing up and not anything that was happening with Ryan, so once that was established, he got a new machine.
In those couple of months, we had medical bills of over $1000 just on the above mentioned items, not the regular things we have. At the same time, Peter's job was an uncertainty.
Also the place that Ryan gets his physio and ot from, has started charging $150 an hour. It is to come out of his package and they told everyone to get a review to cover the charge. Only problem is that we have had a review and been identified as needing more, but there is no money for it. We were in the middle of trying to get Ryan a new cushion to help with the pressure sores he had been getting, when we found this out. It meant that we sort of gave up on finding a cushion, as trialling more would mean charges. Luckily, Ryan found that just getting some gel pads to put in his current cushion will do.
We had just wiped out any money we had on my medical bills and Peter going with Ryan to Sydney, along with the $2000 spent on the van, to be told we need to spend more. The rheumatologist is going to be $390 for the initial consult :O
Peter's job is safe until Christmas at the moment. We have been able to fit in some morning shifts for carers, so this way Peter can start work at 5.30 and come home at lunch time. I can then go to aqua aerobics, to try and alleviate some of the pain I have.
We have come to the decision that if we can get enough for our house, then we can move and have money to get a new van and be able to put some away. If not, MDAQ have said they can assist us to fundraise for it.
Like I said, everyone has had trials that they have to deal with. So when you see me, or someone else on your friends list, writing about what is happening, know they are doing it because there is no one around at that time for them to talk to and getting it out there, takes some of the pressure off of their shoulders.
Sunday, 3 November 2013
Saturday, 27 July 2013
Explaining Funding
Well what a week we have had with services being cut. Sucks big time, but as always we will get there.
Best to explain it all, as it is hard to understand.
Ryan has funding from 3 different areas.
1. Family support package. This is a fixed amount from Disability Services Qld and the amount we took out of their hands for managing and put into the hands of Muscular Dystrophy Qld. This pays for 2 hours a night personal care, out of home respite and help with a cleaner fortnightly, to do the things I can't. This amount is $22,000 per year. MDAQ gets between 5 to 8 percent for helping us manage this (the more I do the less it is). With the charge for carers at $40 an hour, there isn't a lot of room for movement. This amount never increases and the amount of services it gave us when we first got it 7 years ago was double what we get now.
2. HACC funding. This gave us 2 overnights a week, but at a reduced cost and we had to pay the difference out of our own pockets. This is Federal Government and funding has been reduced to half, so we lose 1 night a week overnight care. This is not guaranteed and can go at any time. The full cost of the overnight shift we are losing is $382.50, so not an option to even pay the full amount without selling a body part.
3. Post School funding. This is to help Ryan get out into society, access his job agency and has been used for helping him do his photography course and helped with other access. This is an amount of hours. Due to weeks when we have been away or Ryan in respite or cancelled shifts, Ryan had an abundance of hours. So much so that instead of 30 hours a month, he could get 46 hours a month. So it helped with him accessing sport and another day a week to help with appointments etc for him. Ryan's case worker for this lot of support, didn't realize it was running low or in fact that it had gone over until now. So all of a sudden it is now back to 30 hours.
On top of this, there is respite at Montrose which was 4 nights a month. Due to increase of people accessing the service, for the next 6 months, Ryan will only be able to access it twice.
So in total, what we were getting was 7 overnight shifts, 12 personal care shifts, 7 days to access community and 4 out of home respite shifts a month.
What it will now be a month is 3 overnight shifts, 12 personal care shifts, 3 days to access community and the 4 out of home shifts in August and November.
Confused yet? As you can see, nothing is straight forward. When there is an increase in charges, it will all change again. MDAQ are our advocate with DSQ, but as you can see we don't just deal with them. Due to having some savings that we have been able to carry over for a once off, we can use it to pay for a carer when we have something on. So for example we have a wedding to go to and am looking at a 9 hour shift @ $51 an hour.
Our funding does not have any provision for equipment in it. MDAQ are trying to get a new bed for Ryan, as his keeps breaking down.
We were offered 2 x 5 hours days out of home respite by DSQ, but the place it was offered at was 1.5 hour drive from here. So 3 hours travel of a morning and again of an afternoon. Apart from the fact that Ryan is not up to that much of a drive a day, is 6 hours travel for 5 hours break realistic? I think not. I also think it was a token offer, knowing that it was unsuitable.
With regards to the new disability care that the federal government has brought in. I don't know how that will help or hinder us. It won't be in Qld until 2016 and the more I read about it, the more confused I am. There just doesn't seem to be any clear guides as to how it works and what help you get.
All of this is nothing new. Each year this is what we have to deal with. You seem to get ahead one step then 2 back. After 7 years I should be use to it. The sad thing is, that while I can only pray that we didn't have to go through this every year. I know that it will only stop when Ryan is no longer with us and we don't need it any more.
So I just keep fighting it all and let off steam in here and facebook when I can. I know it is hard for some to understand and I hope this explains it all a bit better. We are lucky that we get help, but it has not been from just luck. It has been from me being a bloody bulldog and fighting for it. I will continue to do that and if people think that is just me whinging, then the unfriend button is up on the right.
Best to explain it all, as it is hard to understand.
Ryan has funding from 3 different areas.
1. Family support package. This is a fixed amount from Disability Services Qld and the amount we took out of their hands for managing and put into the hands of Muscular Dystrophy Qld. This pays for 2 hours a night personal care, out of home respite and help with a cleaner fortnightly, to do the things I can't. This amount is $22,000 per year. MDAQ gets between 5 to 8 percent for helping us manage this (the more I do the less it is). With the charge for carers at $40 an hour, there isn't a lot of room for movement. This amount never increases and the amount of services it gave us when we first got it 7 years ago was double what we get now.
2. HACC funding. This gave us 2 overnights a week, but at a reduced cost and we had to pay the difference out of our own pockets. This is Federal Government and funding has been reduced to half, so we lose 1 night a week overnight care. This is not guaranteed and can go at any time. The full cost of the overnight shift we are losing is $382.50, so not an option to even pay the full amount without selling a body part.
3. Post School funding. This is to help Ryan get out into society, access his job agency and has been used for helping him do his photography course and helped with other access. This is an amount of hours. Due to weeks when we have been away or Ryan in respite or cancelled shifts, Ryan had an abundance of hours. So much so that instead of 30 hours a month, he could get 46 hours a month. So it helped with him accessing sport and another day a week to help with appointments etc for him. Ryan's case worker for this lot of support, didn't realize it was running low or in fact that it had gone over until now. So all of a sudden it is now back to 30 hours.
On top of this, there is respite at Montrose which was 4 nights a month. Due to increase of people accessing the service, for the next 6 months, Ryan will only be able to access it twice.
So in total, what we were getting was 7 overnight shifts, 12 personal care shifts, 7 days to access community and 4 out of home respite shifts a month.
What it will now be a month is 3 overnight shifts, 12 personal care shifts, 3 days to access community and the 4 out of home shifts in August and November.
Confused yet? As you can see, nothing is straight forward. When there is an increase in charges, it will all change again. MDAQ are our advocate with DSQ, but as you can see we don't just deal with them. Due to having some savings that we have been able to carry over for a once off, we can use it to pay for a carer when we have something on. So for example we have a wedding to go to and am looking at a 9 hour shift @ $51 an hour.
Our funding does not have any provision for equipment in it. MDAQ are trying to get a new bed for Ryan, as his keeps breaking down.
We were offered 2 x 5 hours days out of home respite by DSQ, but the place it was offered at was 1.5 hour drive from here. So 3 hours travel of a morning and again of an afternoon. Apart from the fact that Ryan is not up to that much of a drive a day, is 6 hours travel for 5 hours break realistic? I think not. I also think it was a token offer, knowing that it was unsuitable.
With regards to the new disability care that the federal government has brought in. I don't know how that will help or hinder us. It won't be in Qld until 2016 and the more I read about it, the more confused I am. There just doesn't seem to be any clear guides as to how it works and what help you get.
All of this is nothing new. Each year this is what we have to deal with. You seem to get ahead one step then 2 back. After 7 years I should be use to it. The sad thing is, that while I can only pray that we didn't have to go through this every year. I know that it will only stop when Ryan is no longer with us and we don't need it any more.
So I just keep fighting it all and let off steam in here and facebook when I can. I know it is hard for some to understand and I hope this explains it all a bit better. We are lucky that we get help, but it has not been from just luck. It has been from me being a bloody bulldog and fighting for it. I will continue to do that and if people think that is just me whinging, then the unfriend button is up on the right.
Wednesday, 10 July 2013
Rules for all
Recently Ryan went into Dept of Housing to put his name down, so that he could move out and be independent. He did the forms and was sent away with forms for his doctor to fill out. Within half an hour of leaving, he got a call to say not to bother to get the forms filled as he doesn't qualify.
On a day when I had a meeting with MDAQ, we rang housing to see why. There reason is because Ryan had answered the questions (truthfully), that he had to stay put. He told them that 20 years ago we built this house and it suits his wheelchair. That we look after him and haven't hurt him. So because of that he didn't qualify.
Our advocate pointed out that the government had a program (whose name escapes me at the moment) that meant that those with disabilities couldn't be excluded due to having a disability and that also allowed for them to live in society. This programme is now scrapped.
Unless the house becomes unsuitable or we hurt Ryan, he has to stay with us forever. Now I know we don't have forever, but imagine the disabilities that people have that do go on. They must stay at home.
I know that the waiting list is a mile long and I asked when the time comes that we can't look after Ryan, what then. Or if we want to move to a smaller place and it isn't suitable, what can we do. Well apparently we can then put down Ryan's name, as the housing wouldn't be suitable and if we couldn't look after him, it would be classed as unsafe.
Great!! I thought, well at least then we could get help. Hmmm, not really. You can only put their name down when that happens, not beforehand knowing it will happen and no they won't find somewhere straight away, it will still be years of waiting.
Getting the picture yet? We will have a society of elderly looking after their children, when they really can't or a bunch of people living on the streets.
Now do you think that they apply these rules to everyone? Do they ask low income earners for example, if their parents have a house and whether they harm them? As we know, most would say no. So why aren't they made to stay with them? Doesn't everyone deserve to be able to live an independent life?
I did ask Ryan why he hadn't shown them my list of 308 ways to knock him off. I am sure then, that they might have decided he was in an unsafe environment hahaha.
Just imagine if you were told that you had to stay living with your parents. How many of us would be up on murder charges by now lol
If you want to know, just what it is like for a couple of brothers with MD living on their own, then watch this link. Scott and Daniel are from Brisbane.
Scott and Daniels Story
On a day when I had a meeting with MDAQ, we rang housing to see why. There reason is because Ryan had answered the questions (truthfully), that he had to stay put. He told them that 20 years ago we built this house and it suits his wheelchair. That we look after him and haven't hurt him. So because of that he didn't qualify.
Our advocate pointed out that the government had a program (whose name escapes me at the moment) that meant that those with disabilities couldn't be excluded due to having a disability and that also allowed for them to live in society. This programme is now scrapped.
Unless the house becomes unsuitable or we hurt Ryan, he has to stay with us forever. Now I know we don't have forever, but imagine the disabilities that people have that do go on. They must stay at home.
I know that the waiting list is a mile long and I asked when the time comes that we can't look after Ryan, what then. Or if we want to move to a smaller place and it isn't suitable, what can we do. Well apparently we can then put down Ryan's name, as the housing wouldn't be suitable and if we couldn't look after him, it would be classed as unsafe.
Great!! I thought, well at least then we could get help. Hmmm, not really. You can only put their name down when that happens, not beforehand knowing it will happen and no they won't find somewhere straight away, it will still be years of waiting.
Getting the picture yet? We will have a society of elderly looking after their children, when they really can't or a bunch of people living on the streets.
Now do you think that they apply these rules to everyone? Do they ask low income earners for example, if their parents have a house and whether they harm them? As we know, most would say no. So why aren't they made to stay with them? Doesn't everyone deserve to be able to live an independent life?
I did ask Ryan why he hadn't shown them my list of 308 ways to knock him off. I am sure then, that they might have decided he was in an unsafe environment hahaha.
Just imagine if you were told that you had to stay living with your parents. How many of us would be up on murder charges by now lol
If you want to know, just what it is like for a couple of brothers with MD living on their own, then watch this link. Scott and Daniel are from Brisbane.
Scott and Daniels Story
Wednesday, 22 May 2013
When mama bears feel helpless
Don't you just hate it when your children are hurting and there is nothing you can do about it? Well that is how I am feeling now.
Last week, after nearly 2 years together, my son's girlfriend broke up with him. I have had to watch him go through the emotions of being upset and angry.
Everyone, including him, understands how hard it is to be a partner of someone with high needs. The part that is hard for him, is that it was done by private message over facebook.
Now call me old fashion, but how can you try and work out any problems or even get any closure when things are done this way. Why stay overnight here, then go home and send the message? Why not talk about it while you are face to face. Yes, I know that is hard, but hell, so is life.
I have to say, that if any of my kids did this, I would be so disappointed in them and they would soon know it.
All a mother can do, is to keep quiet and be there for your kids, to pick up the pieces and help dust them off.
Last week, after nearly 2 years together, my son's girlfriend broke up with him. I have had to watch him go through the emotions of being upset and angry.
Everyone, including him, understands how hard it is to be a partner of someone with high needs. The part that is hard for him, is that it was done by private message over facebook.
Now call me old fashion, but how can you try and work out any problems or even get any closure when things are done this way. Why stay overnight here, then go home and send the message? Why not talk about it while you are face to face. Yes, I know that is hard, but hell, so is life.
I have to say, that if any of my kids did this, I would be so disappointed in them and they would soon know it.
All a mother can do, is to keep quiet and be there for your kids, to pick up the pieces and help dust them off.
Thursday, 25 April 2013
Training paid off
A couple of weeks ago when Peter was rushed by ambulance to hospital, I wasn't to know that it would serve as a training for this week. On Monday afternoon I had been to the psychologist and talking about how I had run through what I would need to do if Peter had of stayed in. As she said, it is more complex than anyone else.
Fast forward to Monday at 5pm. Everyone on my phone has a personalized ring tone. I was just finishing off cooking dinner when it rang with Peter's tone. I answered and got "This is Rhonda from East Clinic. You need to come in as he isn't going to be able to drive home and need to bring someone to get the car". My response was "who is in there?" Peter hadn't told me he was going. He was in so much pain when he left work that he just drove there and was lucky that someone was free to see him.
So I get off the phone, ring Troy and ask him to come home, ring Jade to see if she is free to come and watch Ryan. She was teaching a dance class and couldn't leave straight away. I rang the guy across the road and asked if he could wait with Ryan until Jade came or we got home. Finished dinner while waiting for Troy, then told Ryan what there was for his carer to give him when he came at 6.30, in case we weren't back.
Troy and I went into the doctors surgery and Rhonda greeted us with "There is a bed waiting for him at St Andrews". So Troy drove Peter up the hill in my car, while I walked the 50 metres or so. In that time, I had rung Ryan's carer and asked him to come early and stay until I got home and would square it away with the agency in the morning. Rung Jade to get clothes and medication for Peter when she got to our place and bring it in.
Before Peter was in his room, with the help of my lovely friends on facebook, I had rung the agency and got a carer to come in the following morning and get Ryan out of bed. I am unable to get him up.
Troy left and brought the van home and let the carer go. Jade left after telling me that she would come over when Corey left for work in the morning so I could get some sleep then. The doctor was taking forever to come as he was held up in surgery, so I left with the nurse promising to ring me when after he came.
Ryan had a bit of a panic at Peter not being here, but I think after the first night, he calmed down. A carer came the next morning and between him and myself, we got Ryan out of bed. Jade then drove Ryan and herself to her work, then met me at the hospital. Peter had a scan and was waiting for the doctor.
Of course as luck would have it, when Ryan, Jade and I went for lunch (which we enjoyed with Rita Langer), the doctor came. Hmmm he couldn't of come in the three hours we were sitting there for haha. Anyway, Peter was to go to theatre at 5.30/6. Again they said they would ring when he came back.
In the time spent with Peter, while he was dozing, I organized a carer to come in and do an overnight shift and another to come in for Wednesday and Thursday mornings to get Ryan up.
It was about 7.30 when Peter went down. The doctor went in and dragged the stones out and put a stent in. I didn't go back up, as it was 10 before Peter was back on the ward an was out to it.
By Wednesday, Peter was a lot better, but couldn't leave hospital until the afternoon. I raced off to do some grocery shopping and I am sure Leanne thought I was going crazy as I just seemed to wander and had forgotten my list and trying to remember what I needed and the whole time just wanting to sleep.
But now, Peter is home and well. He goes back in next Friday to get the stent out. He isn't allowed to work until next Thursday which is fine since we had already been booked in to go to Mt Tamborine on Monday and Tuesday night next week.
I have decided that we have had enough excitement this year and now want it to calm down :)
Fast forward to Monday at 5pm. Everyone on my phone has a personalized ring tone. I was just finishing off cooking dinner when it rang with Peter's tone. I answered and got "This is Rhonda from East Clinic. You need to come in as he isn't going to be able to drive home and need to bring someone to get the car". My response was "who is in there?" Peter hadn't told me he was going. He was in so much pain when he left work that he just drove there and was lucky that someone was free to see him.
So I get off the phone, ring Troy and ask him to come home, ring Jade to see if she is free to come and watch Ryan. She was teaching a dance class and couldn't leave straight away. I rang the guy across the road and asked if he could wait with Ryan until Jade came or we got home. Finished dinner while waiting for Troy, then told Ryan what there was for his carer to give him when he came at 6.30, in case we weren't back.
Troy and I went into the doctors surgery and Rhonda greeted us with "There is a bed waiting for him at St Andrews". So Troy drove Peter up the hill in my car, while I walked the 50 metres or so. In that time, I had rung Ryan's carer and asked him to come early and stay until I got home and would square it away with the agency in the morning. Rung Jade to get clothes and medication for Peter when she got to our place and bring it in.
Before Peter was in his room, with the help of my lovely friends on facebook, I had rung the agency and got a carer to come in the following morning and get Ryan out of bed. I am unable to get him up.
Troy left and brought the van home and let the carer go. Jade left after telling me that she would come over when Corey left for work in the morning so I could get some sleep then. The doctor was taking forever to come as he was held up in surgery, so I left with the nurse promising to ring me when after he came.
Ryan had a bit of a panic at Peter not being here, but I think after the first night, he calmed down. A carer came the next morning and between him and myself, we got Ryan out of bed. Jade then drove Ryan and herself to her work, then met me at the hospital. Peter had a scan and was waiting for the doctor.
Of course as luck would have it, when Ryan, Jade and I went for lunch (which we enjoyed with Rita Langer), the doctor came. Hmmm he couldn't of come in the three hours we were sitting there for haha. Anyway, Peter was to go to theatre at 5.30/6. Again they said they would ring when he came back.
In the time spent with Peter, while he was dozing, I organized a carer to come in and do an overnight shift and another to come in for Wednesday and Thursday mornings to get Ryan up.
It was about 7.30 when Peter went down. The doctor went in and dragged the stones out and put a stent in. I didn't go back up, as it was 10 before Peter was back on the ward an was out to it.
By Wednesday, Peter was a lot better, but couldn't leave hospital until the afternoon. I raced off to do some grocery shopping and I am sure Leanne thought I was going crazy as I just seemed to wander and had forgotten my list and trying to remember what I needed and the whole time just wanting to sleep.
But now, Peter is home and well. He goes back in next Friday to get the stent out. He isn't allowed to work until next Thursday which is fine since we had already been booked in to go to Mt Tamborine on Monday and Tuesday night next week.
I have decided that we have had enough excitement this year and now want it to calm down :)
Sunday, 21 April 2013
Memories and senses
It is funny when thoughts and feelings overcome you. I was in bed the other night and had just dozed off when a noise woke me. I don't know what the noise was, or even if I dreamt it, but I was suddenly wide awake.
Not only awake, but whatever the noise was, it sounded just like the noise the chains that my granddfather use to put around the back of the dairy cows when they came in for milking. Along with this noise and thought came the scent. There is no other smell in the world like fresh milk. Laying in bed I could smell it as if I was there right now.
It is funny because when I normally think of the farm, it is the smell of cow dung that comes to me - I love this smell. Yes I know, weird.
I remembered the cement floor and the cows coming in and going out when finished with. The noises in the shed and of the tails swishing to shoo the flies away. The clang of the metal lids being put on the milk tins, that would be picked up later.
So strong was this memory that if it wasn't the middle of the night, I would of hopped in my car to drive to Gympie to see what had become of the farm.
Not only awake, but whatever the noise was, it sounded just like the noise the chains that my granddfather use to put around the back of the dairy cows when they came in for milking. Along with this noise and thought came the scent. There is no other smell in the world like fresh milk. Laying in bed I could smell it as if I was there right now.
It is funny because when I normally think of the farm, it is the smell of cow dung that comes to me - I love this smell. Yes I know, weird.
I remembered the cement floor and the cows coming in and going out when finished with. The noises in the shed and of the tails swishing to shoo the flies away. The clang of the metal lids being put on the milk tins, that would be picked up later.
So strong was this memory that if it wasn't the middle of the night, I would of hopped in my car to drive to Gympie to see what had become of the farm.
Thursday, 28 March 2013
Understanding.
I am reading a book at the moment about a mother who has lost her daughter to problems associated with diabetes. Last night I read a part in the book and my thought 'oh my God, I can so relate to this and it says it better than I ever could'.
..Not too long ago Nicole and I were living our own lives. And then she got sick and, by the score, doctors and nurses and therapists and social workers began falling out of the sky. ... In our wallets, their faces replaced those of dead presidents. ...Our lives were no longer our own. Every facet was governed and judged by someone else. First we were free, then we weren't, and now we were here. That's all I know for certain.
This is exactly how it feels if you have a child with a disability. Your life is inundated with people. Don't get me wrong, I have extremely grateful for all the help we receive. It's just that life is very much different. At the end of the day when you might throw off your bra or when you get up of a morning and think you might leave your nightie on until you finish tidying the house, you can't. Well maybe you can, but your house is going to have carers in it and I am sure they don't want to have their retinas burnt haha.
Your chain of thought changes and this was brought home to me this week. When I was following the ambulance to the hospital when they took Peter up, my mind was racing a dime a dozen. In the five minutes it took to get to the hospital, I had rung Jade, Peters sister and worked out a plan of action.
With Ryan in respite, my mind was racing... If they kept Peter in, Ryan couldn't stay in respite as it was Easter. Okay I will have to ring CCRC, QMDA, Focal and Alara to try and organize full time help. I had formed a plan of action in my mind and all this and the phone calls in that short drive.
Luckily Peter is fine and all this didn't have to happen.
Now for some observations from the hospital.
Shoes are optional, as most don't have any on.
You have to tell everyone around you why you are there and find out why they are there.
If you have kids, it gives you the right to talk really loud and try and be the centre of attention.
It's okay to use your phone and talk as loud as you can without going outside.
Speaking of outside, it's fine to go out and the staff spend forever trying to find you when your turn comes up (if it was up to me, you then miss out on that spot and the next in line goes).
If you eat chips or any other food, you can more than welcome to drop it on the floor.
Shifting to a different seat to get away from weirdos doesn't work, they just follow you so they can keep telling you about their kidney stones and past medical history.
Thank God we only have to go there rarely (third time in our lives, all what they thought were heart related and closest place with the right equipment if needed). Private health insurance is priceless, when it means that at other times we can go private and not deal with the above situation.
..Not too long ago Nicole and I were living our own lives. And then she got sick and, by the score, doctors and nurses and therapists and social workers began falling out of the sky. ... In our wallets, their faces replaced those of dead presidents. ...Our lives were no longer our own. Every facet was governed and judged by someone else. First we were free, then we weren't, and now we were here. That's all I know for certain.
This is exactly how it feels if you have a child with a disability. Your life is inundated with people. Don't get me wrong, I have extremely grateful for all the help we receive. It's just that life is very much different. At the end of the day when you might throw off your bra or when you get up of a morning and think you might leave your nightie on until you finish tidying the house, you can't. Well maybe you can, but your house is going to have carers in it and I am sure they don't want to have their retinas burnt haha.
Your chain of thought changes and this was brought home to me this week. When I was following the ambulance to the hospital when they took Peter up, my mind was racing a dime a dozen. In the five minutes it took to get to the hospital, I had rung Jade, Peters sister and worked out a plan of action.
With Ryan in respite, my mind was racing... If they kept Peter in, Ryan couldn't stay in respite as it was Easter. Okay I will have to ring CCRC, QMDA, Focal and Alara to try and organize full time help. I had formed a plan of action in my mind and all this and the phone calls in that short drive.
Luckily Peter is fine and all this didn't have to happen.
Now for some observations from the hospital.
Shoes are optional, as most don't have any on.
You have to tell everyone around you why you are there and find out why they are there.
If you have kids, it gives you the right to talk really loud and try and be the centre of attention.
It's okay to use your phone and talk as loud as you can without going outside.
Speaking of outside, it's fine to go out and the staff spend forever trying to find you when your turn comes up (if it was up to me, you then miss out on that spot and the next in line goes).
If you eat chips or any other food, you can more than welcome to drop it on the floor.
Shifting to a different seat to get away from weirdos doesn't work, they just follow you so they can keep telling you about their kidney stones and past medical history.
Thank God we only have to go there rarely (third time in our lives, all what they thought were heart related and closest place with the right equipment if needed). Private health insurance is priceless, when it means that at other times we can go private and not deal with the above situation.
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