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

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.

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 :)

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.

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.

How much can a bear bear?

This is a whinge, but I need to get it down on paper - well in word form. So if you want to leave my pity party, now is the time to go.

Years ago a very dear friend said to me "You are never given more than you  can handle". I have always taken comfort in this and believe it to be true.

I look at my close family and know that they struggle and panic with son having asthma occasionally (not trivialising asthma as you will see). This is their level of what they can bear and that is fine.

Now while I might complain or use humour to cope, we normally get through things and come out the other side, because it isn't more than we can handle.

Today has me wondering, if maybe I have reached that limit. Will I be pushed to crack? Is this some sort of test? WTF did we do in a past life that we have to experience it this time around?

If you have read my past blogs, you will know of some of the medical things that we have been through, but here is a brief run down:-

1 ovary removed, 3 miscarriages, 1 ectopic pregnancy, 3 caesarians  1 hysterectomy (well another would be impossible) gall bladder removed, in hospital for a week with asthma that they didn't think I would come home from, diabetes, asthma, severe depression and a back that as my gp says "is fucked".

Now with the kids. All 3 had asthma. Jade had a couple of hospital visits with asthma. Troy for the first 5 years of his life, would go to hospital every 6 to 8 months to get grommets, had adenoids out twice and tonsils out. Due to this he had some speech problems and had to see a speech therapist. Before he was 2, he had tests for what they thought was epilepsy but which turned out to be cluster migraines. We were told he would either grow out of the or have them for life. Thankfully he grew out of them around the age of 8.

Peter had his tonsils out at around the age of 35. Ryan had his done when he was around 10. Then of course Ryan with DMD and all that goes with that - including losing all movement after his rods being done and the problems of his back opening up. And Ryan going to commit suicide when he was younger.

We had a painting business that at one stage had 3 lots of people in a row not pay, that crippled us and a worker that went up on a murder charge of killing his wife. God this all sounds like a bad novel.

So all of the above is a summary of 1985 until 2012. Then we have 2013.

I think that this year alone, has seen me cry myself to sleep more than the rest of my life combined.

We are still struggling from the dickhead that ripped us off in January. The same week that happened, Peter's work hours were cut in half by his boss. Peter had the breakdown, Ryan had breathing problems and somehow in all that was 'normal' life.

The latest is that Ryan is having panic attacks. He has valium, which I hope helps.

I feel hopeless to be able to help my family and keep us all on the even keel of life. I'm tired. So very, very tired of the fight. It always seems like, we crawl our way to a good place, then get kicked in the teeth, never having time to enjoy what is happening. It is also very hard to focus on the positive when the negative seems to swamp you.

I know I will be fine. I am seeing a psychologist who understands the battles we are going through, as she use to work for DSQ in Ipswich.

But you do really have to wonder, just how much can you bear and what happens when you crack your breaking point.

If you stayed and read all this crap, I can now tell you that yes it has helped to get it down and out there. I don't want hugs or sympathy or anything else. Just sharing the burden is more than enough for me. :)

My Baby

It's amazing how quickly life flashes by. You just seem to blink and your babies are all grown up into young adults. Sometimes you wish you could just slow down the world and enjoy for longer the journey you all take.

So it brings me to say why I feel this way. On Valentines Day, my baby turns 21. OMG where have the years gone?

Troy to me, is still that little boy with fine blonde hair that would have a mind of its own.

Troy came into our lives at a time that we needed something good. Out of 7 pregnancies, he was the only one not conceived on fertility drugs. To this day, I am sure he was sent to soften the blow and help us cope at a time we needed it. Rather than going into it all, it is written on here - http://kerrie-itsmylife.blogspot.com.au/2012/02/babies-and-jour-sneys.html

Three kids in three years didn't leave much time to think. 

From the word go, Troy had a mind of his own and we all knew for sure he had arrived. He was the one that would rip off his nappy when he was in his cot and trying to take after his father's profession, would paint the cot, the walls and anything else he could reach with poop. 

He was my climber and nothing was going to stop him from going where he wanted to. He had a stubborn streak and we often had a battle of wills. 

The two things that really stick out - Troy had a dummy and no one and nothing was going to take it off of him. To me he had gotten too old to have one at two, so I had to cut it up to stop him using it. After the initial cries which lasted all of half an hour, it was soon forgotten. 

The other item was an outfit that he had. Anyone who knew Troy back then would remember it - black and fluro green bike pants, with a matching t shirt. It was so bad that I had to buy another, so that the dirty one could go in the wash. It didn't matter if you let him choose something to buy, he would still only want to wear this outfit. It was stained and getting ratty. In the end, it had to go the same way as the dummy and be cut up (well it almost just fell apart). Again more tears, but soon over it. 

It must of been this tortured memory that left his mark on his fashion sense. Over the years, I could take the other two anywhere and buy them anything to wear. Troy was different, he had to have just the right clothes that he liked. So he always ended up with less clothes, because his cost more than the variety store ones of his brother and sister. 

Troy was never been a clingy child. He was always saying 'I can do it'.  He was though and still is to a degree, someone who didn't want to be in the spotlight. While noisy around home, he was quiet with those he didn't know. 

I can still remember him going through primary school, and every time he had to give an oral, his legs would be shaking so much, that it is a wonder he could stand up. He excelled in Maths at school, to the point that his year 8 teacher would tell me that Troy could work out equations quicker than he could knowing the answer. 

Troy has had a wide variety of interests over the years. He use to do karate and advanced a couple of belts in that at a very young age. He was then old enough to play soccer, which he did in the winter months for a few years. His team did very well, making the finals nearly every year. Troy was fantastic as goal keeper, although he did play all positions. 

In the summer months, Troy did Little Athletics for a couple of years. Again something that he did well in and at school with athletics as well. He had decided to give up little A's and finally decided on tenpin bowling as his summer sport. Again he excelled in this and by the second year was also playing the adult league and in the Ipswich team. Troy continued with this for around the next 6 years. 

Even before Troy was old enough. He got a job at the local bowling centre. He did this until he started his apprenticeship. 

Career wise, Troy had wanted to be an electrician. A friend of ours, offered to give him some work experience to see if he liked it. After the first week, Troy told us that he thought it was boring and that crawling around in ceilings full of installation that would creep its way into every crevice you had, was not something he wanted to do.

Troy was then sent by the school to do experience with a marine upholster. While he enjoyed this and was offered a school based apprenticeship, he couldn't see himself sitting in a shed all day. The guy was upset, as he said that Troy was the hardest worker that had been sent to him.

At this time, one of the guys that Troy bowled with, offered him some school holiday work, helping him in his tiling business. The first day saw Troy carting over a tonne of tiles up 2 stories in a house. He loved it! So he set out to find himself an apprenticeship. This came in the form of Apprenticeship Queensland.

Troy left school - or rather ran from school - to start the next stage of his life. It wasn't always easy, as there were down times when there were no hosts to employ him. Even with these down times, Troy finished his apprenticeship in under 3 years. 

The good about going through an agency is that you get to work with a variety of people and gather a wealth of knowledge. The bad is that at the end of your time, you have no job. Troy was able to pick up work here and there with tilers. Over a year ago, he set up his own business. It is going in leaps and bounds and he has a fantastic name around the area. He has gone to jobs to fill in for regular tilers and done such a great job that companies have made him their number 1 tiler to call on. 

.

Right up until the last twelve months, Troy was still someone who was quiet around those he didn't know. Having his own business, he has come out of his shell in leaps and bounds. He has strong values and God help you if you have kids that don't behave, as he will tell you how he could never get away with any crap and kids need discipline haha. 

At 17, Troy became a dad to a kilo little ball of energy - spanner. He came home with his dad, slept in his room, went for drives with him and even now, sits at night next to him. I think there is a similarity in colouring between the two of them haha.

Troy's feelings run deep. You don't always know what he is thinking or feeling. He will just do things out of the blue, that really show an insight into his mind. An example of this is that the necklace in the above photos. Ryan gave that to him when he was about 13. It only comes off, when he is doing something where it might get lost eg skiing. It stays there and if you ask him if he wants a necklace for a present, the answer is no, he has one. The other, was him going out and getting a tattoo of Ryan's portrait. Not many brothers would do that. It moved Ryan and I think he finally realized how much his brother really does love him.

I could not ask for a better son. Troy is wise beyond his years, caring and thoughtful. He would go without, to make the world an easier place for you to be in. He isn't a fool and won't let anyone treat him like one. I am so proud of him and the man he has become. 

So on February 14th, when you turn 21. Troy you can know that I am wishing you, all the happiness that I know you deserve. I hope that his year, is all you want it to be and more. I promise that I will still keep driving you nuts at times and speaking of driving, that I will continue to make you feel unsafe in the car with me driving and NO you cannot drive my car lol.

Love you lots and forever xxx