Our Humour

One thing I love about my friends, is that they get our sense of humour. It's also sometimes amusing to view others reaction to us. Some are shocked, disgusted and some just think we are plain weird - and we are not denying that.

Unless you have been in a situation the same as ours, you will never know how you will react. This saying says it all.

When Ryan was diagnosed, there were another 8 boys in the Ipswich area with DMD. He is the only one of the 9 left. We were told he would only live up until 20, but here he is 23, nearly 24. Every day he is with us is a blessing.

At every cough, sniffle or pain - we panic. If someone comes to the house who is unwell, I spend the time from when they have gone, spraying the house with disinfectant. Even when we are unwell, we try to spend little or no time near Ryan.

Now in saying all of that. We could just sit around and cry and be upset. But if we did that, then life would be harder. Ryan or ourselves wouldn't enjoy it and to be honest, I don't think he would be here if we lived life like that.

So instead, we laugh at the things we can't change. We make fun of each other to relieve tension. Just imagine you spending 24/7 with your teenage/young adult child and not working out ways to knock them off when you have had enough of each other, but still have to stay together lol.

When we joke around, it doesn't mean we don't love each other, it means that we do and have the type of relationship that we can talk about anything.

So if you happen to come across another crackpot family like ours, remember that the way they are is probably their coping mechanism. That if they didn't laugh, they would spend their time crying. The laughing items is what makes the best memories and they are the things that will never be forgotten.

Strange things I now know.

Following my holidays so far this year, I have learnt a few things and possibly should share this info haha. 

1. If you are paranoid about public toilets - do not go on a cruise. There is no way you can squat with all that swaying.

2. Men are only allowed to do number 2's in your room or toilets also set up for disabled. The men's toilets in open areas only had a urinal. My way of thinking with this, is that they know that yes, men's shit does stink and only their wives/partners should suffer the smell in their rooms haha.

3. Drinks are reasonably priced, bingo is expensive. They also only play 1 game per card eg 1 line then onto next game. So with 5 games you pay $30 and the games are 1 line, 1 line, 2 lines, top and bottom line, full card. 

4. Ugly Dave Gray is not dead as we thought, but entertaining on cruise ships.

5. You don't roll out of bed when its a bit rough.

6. Its fun to watch the shower water pooling in the tray swish back and forth.

7. When metal detecting, don't go to an area that has recently had council work done. You will find an assortment of drill bits and bolts and nothing else lol.

8. Too many bubbles in a spa, sends you out looking like a giant meringue. 

9. The trip back home, always seems quicker than the one there. 

10. Don't try and finish that book before getting home. I spent the last night reading a book I couldn't put down but that had me bawling for the last quarter of it. Was a wreck in the morning lol.

11 and finally. The more people you talk to and get to know, the better your holiday and life will be in general.

Now my updated list.

1. Read 50 35 books in the year. Doesn't matter what type but as long as its 50 and I will be able to keep track with my new kindle.
2. Do another cooking class. At least 1 but hopefully 2. So far done 5, one of which was with Jamie Oliver and one on the ship
3. Go on a holiday, hopefully to Melbourne. I was last there in 1984, so just a few years ago lol Well I didn't get to Melbourne but have had a holiday
4. Go to a horse 'cup' day - going to Ipswich cup next month
5. Go down another 20kgs (gotten a bit stuck at the moment)
6. Get a lot more writing from my autobiography done - Been doing heaps of that
7. Have lunch or dinner at Bretts wharf or Aria Brisbane
8. Go through the glow worm caves at Springbrook hopefully when the glow fungi is out as well or the fireflies
9. Do a charity event - with not a lot of walking done today MDAQ walk
10. Have a tarot reading - have the name of someone really good in Fernvale
11. Go to a musical (booked for Jersey Boys in July)
12. Go to gold class movie
13. Go on a cruise 
14. Get a fish - either fighter or gold fish or two. - Ryan got me one (Elvis) for mother's day
15. Go to a zoo
16. Go to brisbane city markets
17. Brisbane's koala and river cruise
18. Toowoomba carnival of flowers
19. Attend a dawn service
20. Go to Q1 lookout
21. Have a flying lesson - Changing this to do the flight stimulation first, then maybe a flying lesson
22. crystal castle at mullumbimby
23. do a cross stitch
24. have a facial Have had a couple now
25. have a massage
26. try a new food Tried dragon fruit and poppadoms and some vegetarian dishes so far and now macaroons
27. aqua aerobics classes.  Done and going to do more
28. be part of a flash mob - now where does someone find these people
29. Drive a convertible with the top down and music blaring.
30. Get family tree in order - got heaps of this done
31. Go on a retreat
32. Go to the comedy club
33. Play blackjack at the casino - done and won
34. Swim in the ocean - haven't done this for many many years
35. Go to an opera or listen or an opera singer - don't know if I could sit through a whole opera.
36. Spend a night at maleny/montville
37. Hold a snake - to overcome a fear (Went on the Brisbane wheel to overcome fear of heights but had to get off, so only went around once. Never again lol )
38. Attend the good food festival
39. feed the homeless - was looking into this a couple of months ago but didn't do anything about it. (contacted agencies but none have gotten back to me yet)
40. do a belly dancing class - well I have enough belly to wobble haha
41. try a new drink  tried lots of new ones now lol
42. queen mary falls walk
43. drink a cocktail 
44. host a murder mystery dinner party - have the game here, now to organize
45. Put $5 a day into money box - use it for something special at the end of the year. - been doing this
46. Have a games night with friends
47. Put $50 on black at the casino for my first and only bet at the table. and won
48. Trike ride from Gold Coast to Mt Tambourine wineries
49. Ride on a carousel
50. Have a kick arse birthday party (venue, dj, food sorted. Decorations started)

Holidays Galore

What a wonderful 2 weeks we had on the Sunshine Coast and boy did it live up to its name. I know they have had some terrible flash flooding and heaps of rain, but apart from one night with a quick shower, there was no rain until coming home today.

We arrived on Monday afternoon, unpacked and relaxed. Tuesday was spent doing a grocery shop and having a look around Stockland shopping centre. Good to see nothing has changed there. Ryan and I went for a walk along some of the new paths beside the water and checked out the new decks in the park next to  where we stayed. Can't wait until the path is finally finished all the way to the broad walk at Bullcock Beach. The markets on a Sunday will be an even closer walk lol.

Wednesday we went to Kings Beach Surf lifesaving Club for lunch. Lovely meal with a great view. Took some pics and we confirmed that we are going to get our ashes thrown off the point, which is where we had our wedding photos taken. Back at the unit we got ready for Steve and Cindy who were coming over for dinner. I had made some pumpkin soup the week before which I had frozen, so thawed it. I also made some bread and chicken sausages which was served with asparagus, broccoli and baby carrots. Cindy chose well with dessert of apple crumble cheesecake - 2 of my fav desserts in one. So lots of laughs, conversation and a lovely relaxed night.

For the first time ever we had carers on holidays. People don't realize that going away - which we love to do - means that it is a lot more work for us with Ryan. We don't have the help 4 nights a week and the 2 overnighters. It can be very tiring and a lot of the time we normally spend sleeping during the day in shifts. This time though was heaven. We asked the agencies down here if they could brokerage to an agency up the coast the hours we normally have. One (the one that comes out of our dsq package) said yes, and they were able to get a fantastic guy to come in the 4 nights a week. He was great with Ryan and fitted in with us very easily. He finished his time with us, by giving us his number and saying that anything he could do to help - if we wanted to go up and someone to spend time with Ryan or watch him for us to have a night alone up there, to just ring and he didn't want any payment for it. We would never take him up on no payment, but it was so lovely for him to offer.

The other agency (the one that we pay for ourselves) said no they wouldn't brokerage it out, so instead Queensland Council of Carers said they would help at no cost to us and had someone come in 2 nights a week from 10 to 6.30am. She was someone who was also a great worker. She picked it up very easily and did a great job.

Having them both come in, meant that we weren't tired all the time and more relaxed.

On the Thursday we headed up to Sunshine Plaza shopping centre at Maroochydore. I always get some great bargains there. I found a dress for my 50th, a beach towel on special at Myers for aqua aerobics and some pressies for friends. I also treated myself to San Churro.

Peter and Ryan came back home on that Friday as they had a football match to go to. They also went to the Gold Coast on Saturday for Ryan to visit his girlfriend Jade and see Peter's mum for mother's day, before returning to the coast on the Sunday.

I on the other hand spent Friday going to a party shop and getting some decorations for my party. On the Saturday I went to Noosa to have lunch with some friends who I went to school with from primary school. I love catching up with Tanya and Carolyn. We had a beautiful Thai lunch before heading back to Tanya's house. About 7 hours after we first met up, I headed back to the unit. As I sat down to dinner, fireworks were being set off just outside one of the windows (but in the distance) and it seemed like a show just for me.

Mother's Day and the wonderful Lawson family arrived to spend the day, just beating Peter and Ryan returning. Again a day of laughing, fishing, talking and more talking and another great day. It wasn't to end then however, with Jade and her friend Jess surprised me by turning up at 10.30 that night. They came bearing flowers and lollies and what was going to be an early night in bed - which is where I was when they arrived lol - turned into a nearly 1am night after yakking to them in the bedroom. A great way to end Mother's Day.

The next day I knew that Ryan's girlfriend Jade was coming up for a couple of days to surprise him. As I was leaving with the girls to Montville, I said that a friend would be turning up in an hour. Ryan said he was going to leave my friends to wait by themselves until I got back. We all laughed and said 'yeah I bet you don't'. On returning, Peter told us that when they went down Ryan was grumbling, but as soon as he saw Jade his face lite up.

We on the other hand went to Montville. I got some thank you lollies for my party. An outfit for our Jade to wear and some yummy choc macadamia fudge. On the way back we called into the cheese factory. Nowhere near as good as Hunter Belle Cheese, but the yoghurt I got from them was so light in your mouth, with a true passionfruit taste from the pulp littered through it.

Jess and Jade left after lunch. Throughout all this I got invited to go to the Ipswich Cup next month, so my mind was racing as to what I would wear. I settled on the dress I had gotten for my party and we again went back to Sunshine Plaza to try and find a hat. I found one that had a white flower, but pulling it off, I put on a black one, got some blue feathers and blue diamantes to dress it up and I had a one of a kind hat. So my $25 dress is going to 3 outings so far lol

We showed Ryan's Jade (see how confusing my life is with 2 Jades haha) around the coast. That night Peter and I went out for a meal at the RSL. Bloody awful meal, but at least the $176 I took out of the poker machine covered the cost.

Jade left to go back to work and Uni. I was able to get presents for the 7 birthdays we have happening in the next month, so that made me feel that I was organized.

Thursday we went to Golden Beach tavern for lunch. For $10 my meal of fish and salad was wonderful. The boys had steak and commented it was cooked to perfection. Well worth going to is your ever up that way.

Friday lunch and Steve and Cindy came for lunch and brought Steve's dad along so he could admire the view. Speaking of the view, it has an awesome reaction from people. When Jess and Jade came, it was night. The following morning Jess walked out and he first words were OMG. The same reaction from Jo the overnight support worker. She arrived at night and when it got light enough for her to see the view, she was awestruck.

Saturday was the Coffee Club for lunch. Its right opposite the beach and very relaxing to sit and enjoy a meal while watching the happenings on the beach. Another old friend Julie came over that afternoon for a catch up.

Peter and Ryan left Sunday afternoon and I finished packing. I also got to spend a couple of hours with Judy the manager of where we stay. We get along really well and enjoy catching up on how each others families are doing.

As I drove home this morning, it was with a heavy heart and a wish that it was time for us to move up there. Have I mentioned that I am gradually selling any excess items I have? I am culling so that all we have left will fit in a unit.

So for another 13 months, it is goodbye Sunshine coast, lots of fresh seafood and great friends and view.

Carers/Support workers

Carers are the people that keep us sane. They are the ones we trust to help us care for Ryan. Most are the most wonderful and caring person that you could ever meet. But if you have never had any experience in dealing with these men and women, here is an insight into this very special world.

Ryan was 9 when we got our first carer. We didn't really know too much about how it all worked except that someone would come into help. The first guy came, toileted and showered Ryan, then when he was finished, came into the lounge room, plonked himself on the lounge and asked where his cuppa was. We thought this must be normal. He would stay for another hour or so.

Other nights he would turn up when he wasn't rostered on because 'I can't come tomorrow night'. This I found unsettling. Due to it being a night when no one was suppose to come, I would be in my pj's relaxing.   He was very touchy, feely with Ryan. Not using a washer in the shower and some other things that didn't sit right. When I rang up to cancel the service, they wanted to know why. I hesitated but they told me that 6 other families had rung that day as well. He was sacked and we were talked into letting someone else come in and show us that what this guy did, was not normal.

The next person was a young uni student. She was very outgoing and professional. We were sad to see her go when she found a job out west. It meant that we had seen, that carers don't expect us to wait on them and that they are here to help.

In the last 14 years, we have had people of all ages, races and genders. The youngest has been 17 and the oldest nearly 60. Some when they first come, have you thinking... 'if I saw you in a dark alley, I would cross the street and be worried'. There are kindly 'mother' type woman, tattooed bike riding girls, christian young men, muso's, long haired 40 year old ex meat workers - people from all walks of life.

One thing that amazes me with them, is that they can do this job. I know that I couldn't and have so much respect for them. A lot of people think that being a carer is an easy job for them. That they get to take people out to movies, shopping etc. Yes that is one side of the job, BUT there is this side. How many people do you know that would toilet an adult? Its not just sitting them on the toilet, but wiping etc. How many would shower another adult? Wash their hair, clean their teeth, adjust their body parts (how something that looks like a plucked chicken, can need so much moving, is beyond me lol ).

We have had one carer for over 10 years now. We have also only had 3 that we have had to get rid of, apart from the first guy. One guy had relationship problems. He would come here, cry for the hour and half and then go home. Meanwhile, we had to do Ryan because he was incapable of doing it because he was too upset. He also talked another client into giving him a car. He didn't get to stay in the job very long. Another guy, would not turn up for shifts because his wife wouldn't let him come. He also didn't get to stay too long.

The third was a woman who was really good at her job. We know that accidents happen and accept that. One night I was out and Peter was in the shed. He came down to find her gone and the kids by themselves. The kids when I got home were in a funny mood. It took a while but finally they admitted that something had happened. When hoisting Ryan, his penis had gotten caught and he yelled. The woman then told the kids they weren't to tell us that it had happened and left early. The accident is not what got her sacked from us, it was telling the kids to lie. That I just don't tolerate.

Carers are told they aren't to become close to clients. Sorry but when you are in someones home 3 or 4 days a week, you become part of the family. Any parties or celebrations they come too. They know more about us than our closest friends and family and we know all about them as well.

At first; well probably for the first few years, we would act like visitors were here. The things that you do when you get home from work like, ripping your bra off, having a shower and getting comfy in your jammies, laying on the lounge vegging out. These things we didn't do since someone else would be in our home. Now I do. Hell we have carers stay overnight 2 nights a week and they have the run of our home while I am asleep lol.

After reading all this and if you still think that carers have good jobs, then remember this. Agencies, as I have said, tell carers they are not to have a 'relationship' with clients or their families. Some of their clients are terminal and when they pass away, instead of the agency telling them, they will ring and say that the shifts are cancelled and the person is no longer a client. They don't tell them that the person has passed away, even if they have been with them for years.

These men and women are amazing!! We are blessed to call them friends and even some of the ones that have moved onto other careers are still friends with us. They have my respect and my heartfelt thanks.