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aussietmrail

aussietmrail's journey since 9-11-2017

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Hi all can't believe it has been today  two months since my son passed away and turned my wife and my life upside down, sadly we knew he didn't have a long life span thanks to muscular dys

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Had an issue with my lap top again, thought I  lost the post and started another thread, Mick could you delete one of them.

My son suffered with Duchenne mucsular dystprothy, he was found out by mistake having mild surgery when he was three years old,  sadly we knew that he would  pass away one day, normally chest infections or their heart gave out, that is what happen to my son his heart muscles  stopped , the only thing keeping him alive was a ventilator, 24/7.

Here is a pic of my son on one o his respite outs a month before he passed away, we had this pic framed and now on our lounge room wall, the tube beside his mouth connects to a sip and puff ventilator, the carer did well in taking the pic without him  using the ventilator, he had another one for going to bed.

Just can't believe it has being two months since he passed away,  my wife is handling it different to me so I am hoping when we get the call from the crematorium in Brisbane  that his plaque is in the garden bed, it takes six weeks to get printed and sent to Melbourne, she will break down,.

Today  was special, we both had a minutes silence for him  to remember him , 11 am, between 11 and 12 am he passed away and played his favorite music all afternoon, it is so quiet here now, no carers coming in morning or at night, can have brekkie earlier now, was missing out in  a meal and up early 6 am now we are sleeping in till 8 am, we are lost.

My wife comes out with me when I go to specialist appointments and we have lunch out afterwards, tomorrow we are going to Sizzlers for brekkie, have never being able to do that, very hard to get a carer to look after him that time of the morning, opens 7 am.

Having our first holiday in December going to Caloundra   sunshine coast and next year going to the Gold Coast for 7 days in March., haven't being  on a holiday since the last one we had before he started school.

It is going to take a longtime to get out lives back together  looking after our son  for 31 years and go with out so he could have what he wanted,, his computer was his dream to have a top gaming computer which he got, I am transferring all my pics and links to his computer so I can use it, the computer is a tribute to him, if I don't use it we lose it., having trouble with links .Slowly getting back to Camdale, at the moment Queensland is in  election mode, going to the polls on the 25th of December be a full on day that day being booth captain  at one  of the polling booths for my local MP, also helping her out by driving around around in her ute  pulling her trailer with a friend great job around her electorate of an afternoon.

Main problem is transferring big links from my sons  F data drive to  Chromes links, can only do one link at a time, any ideas.

I might be able to spray undercoat on my two F7/B locos tomorrow afternoon , will depend on the weather, being raining most of today and tomorrow morning, can get some projects done of a morning during the week till after the election

He  had to pass away on 9-11, today was also to date  for the 11th day, 11, hour of the 11 month the guns went silent WW1, he passed away just after 11 am two months back.

Still a long way to go, I do miss him, he wasn't just my son was my mate as well we did a lot together , he was hard to handle some times but we made the best out of the good days.

WE don't know how long we be staying here, will depend on how my health, goes was afraid  of this happening one of us start having issues,had to be me , finish the layout go from there  and have  some fun running trains, a couple of years, aim for next May when I joined the Forum four years back.

That has being my journey since 9-11 two months back.

Tony from down under keeping on moving ahead

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Thank you for posting his picture. Will keep him in my thoughts today. And will do the same for you.

Lost my father this last summer and I suppose he and I were the reverse of you and your son --Best Mates. I'm sure with your son's illness it was hard dealing with even the simple things, but you must have been like me and my dad; sometimes you could almost call it ESP the way we could make each other laugh over stupid things.

It sounds like a very hard time for you and your wife. Just know that many of us have gone through, or are going through, similar times. You don't have to be alone in your grieving. Just leave a note here when you need to. :)

 

Here, on the lower part it shows how to create a HTML file of all your links: https://support.google.com/chrome/answer/96816?hl=en

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Morning Griff, many thanks for the kind words, I remember you talking about the loss of your dad beginning of this year,, know how you fell, I lost my uncle three weeks earlier in mid August and he was like a father figure to me, we were pretty close, he lost his fight with skin cancer.

Yes it was a tough time with my son, he couldn't do anything for himself, things we take for granted like a good scratch, we had to do that for him, he only had movement of a couple of fingers in his right hand and same in his left, coming to playing games on his computer he made the most of that programming them to play games was very good at it, was up in the top 10 in the game called Diablo 111.

Yeah we fought like cats and dogs, as you say we had great times as well, and silly games we used to play, he said a week ago he wanted to act like a man, stopped playing the game, but a couple of nights before he passed away he started it up again, those moments I will remember always. My wife and me are lost at the moment, was asked what we planned to do in six months couldn't answer that  as we are on a budget, will have to wait till then to make that answer, just go day by day.

Went out for brekkie this morning  and the whole of Ipswich must of being there, big line up, found out no wonder was a special offer going only paid half price, don"t think we go back, I managed to do some work on the layout yet another point plan mock up, pics to follow on my layout post.

Thanks for that link on Chrome will have a good read of it, going on my sons computer tomorrow to sort out those files and check out Spotiffy  to upload more music .

Here is a link to Muscular dystrophy 

http://mdaustralia.org.au/wp-content/uploads/2012/07/002_ducene_becker-july-2012.pdf

 

Tony from down under keeping on moving ahead.

 

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That's a lovely photo Tony - I'm pleased you posted it.

I can certainly understand how you and your wife must be feeling, even though I've never felt the loss of someone quite so close to me. I lost my dad when I was only seven so I don't really remember anything about him although I do recall the day itself quite clearly. More recently we've endured the loss of my nephew and Pams son, both in their twenties, and yes, it's hard to accept that they're now both gone but its all the more painful when its someone you spend most of your days with.

I know this might sound silly to some people but the greatest personal loss I've ever felt was this August Bank Holiday when we lost our little dog.  He was a part of our family and we spent our whole days with him. We'd speak to him just as you would a child, take him with us almost every time we went out. He was our little boy who depended on us for his every need and we were devastated when we lost him. I know you can't possibly compare the loss of a son to the loss of a pet dog but that bond that develops between you is just as strong and the loss just as painfully felt. The photos and little mementos we have kept, and that you will obviously have, are still raw reminders of 14 very happy years we spent together but the enjoyment and happiness that he brought us during that time far outweighs the loss we currently feel. We have to be grateful for the time we have been allowed to share with them and know that our lives have been enriched through them.

One thing these events teach you is that you can't plan for the future - you have to live for today, so go on that holiday and enjoy doing all the things you've been unable to do over the past years. Take something personal of your sons along with you so that you feel he's right there beside you. As an example, I have our dogs collar fastened to my rucksack and I feel he's tagging along with us on our walks - it works fine.

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I wear a a little amethyst broach of my late mums on my uniform all the time whenever i go to sea. Its a great comfort to me especially in stress times. I am often asked why I do it.

Love the dogs collar on your rucksack Mick. 

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Hi Mick, many thanks for the kind words, yeah can understand what you went through when you lost your little dog, we lost our little dog 11 years back she was part of our family, she was 17 and half  when we had to put her down.

We all came to an agreement who ever passed away first, our dogs ashes went with them and it had to be our son, when we had his plaque  made up our dogs name was at the bottom of the plaque only her name.

Thank is a great idea Mick, we copied some pics of Chris from his face book page, I be powering up his computer tomorrow so I can send them to my lap top, one pic he used on  his face book page I want to put on the screen of my new mobile phone, sadly he didn't buy any bracelet's or  a watch, my wife is using his mobile  we bought him for Christmas last year. He just got a new id card  just after he passed away so I cut out his photo and  my wife has it in her purse, that pic we had framed and now proudly  hanging on the lounge room wall above his computer,  we be sorting out those pics so I can have one of him in a small frame on the lap top table in his room. My mum gave us picture she took of the three of us when he was about 15 years old that photo is on the was as well.

Talking about other family loses, Chris want' our only child we had two girls and another boy, they died when they were infants  8 weeks old, the first girl  we had had her home for a month before she started having heart issues and sadly passed away before she had her surgery, was told one off so we tried again  the second girl was still born nearly full term  , they didn't know why . Chris come along perfect baby, was born 6 weeks early, when he was two the doctors said to try again and he got a brother, sadly he never came home had even a worse heart condition and didn't recover from the heart surgery.

We were lucky to get a spot behind his sister at the crematorium, still waiting for the plaque to be put on the ground hopefully this week of early next week, so we can go down and visit all four of them, the other son is not far from the first daughter is in my wife's family plot , since we be away for Christmas, always made a point to visit the three others on Christmas day..

I can't believe it has being 11 weeks and a couple of days since our son passed away,, next Monday 12 weeks, the house feels so empty , one of the cares came around on Monday, that showered him before he passed away, he was shocked , I hope in time the other carers come around as well for some sort of closure.

Be looking forward to our holiday in a couple of weeks now not far now, first holiday in 26 years, also another holiday next year in March, paid by Montrose  that look after disabled children and adults , they give the families that lose a child of adult  a weeks holiday in their units down the Gold Coast, gee will be hotting up and busy getting close to the Commonwealth games.

Wont get much of a chance this week to work  on the layout leave it to the weekend, cooler as well to  work on the layout, lots to do, got a heart specialist appointment on Friday, what ever  comes out of that appointment.

Thanks Mick for deleting that other thread

Hi Mark, sorry to hear about your mums loss , great you have  something of hers close to you, yes helps in stressful times.

Tony from down under keeping on moving ahead

 

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Tony I just don't know what to say. It's bad enough losing one child but I had no idea that you and you wife had endured such tragedy and so much pain previously. I am so sorry to hear that.

I was about to say "enjoy your holiday" because I really do hope you can, but it must be very difficult trying to find enjoyment in anything when you've had so much taken from you. How on earth you both must feel I really could never begin to understand. Thinking of you both.

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Morning Mick, many thanks for the kind words, yeah, all we wanted was two healthy children,  Chris was ok for three years,  to make it harder I found out I have a condition that caused the other three to be born that way , as I said  the docs said a one off to keep trying , but didn't find out till 1997 when the special blood test finely came to Australia, that really knocked me around , Chris's MD was bought down by the mothers side..

All that with the other babies happened 33 years back last baby was born 1988, we have three baby angles, took a while to find a larger boy angle to fit Chris and he his nursing his baby brother  and two sisters beside him , bought a Christmas star to go behind them.

I had an appointment at the same hospital my son went to to see a heart surgeon today  , not so good have to see a heart specialist hopefully early next year , wanted to see his chest specialist to say thank your for giving us those extra yeas , especially the sip and puff ventilator program letting him get out and about . If you go back to his pic that what the tube is on that black bracket , like air on tap.

All my problems are coming out now, was afraid of that happening , I am going to keep pushing along to get the layout up and running  about May next year, be 4 years in the making special moment to see the first train run and again was very close to having DCC running so my son could join in and run a train on his computer by Wi-Fi , not to be now , stuck with DC unless I win the lotto.

My wife is has her issues as well slowly getting on top of it.

His ashes are now in the ground got a letter to let us know, my mum wants to go as well going Wednesday, what timing Monday it be 12 weeks since he passed away and next week 3 calendar months  11th of December., visit the other three children as well they are all close by, hopefully after seeing his plague in the ground will make a lot easier and to let go to move on  keeping his memory in our hearts.

We still have some good pics of him, I want to put the one he used for his face book page pic  on my phone, my sister will have to show  me how to do that one.

Yes thank you again Mick we will enjoy our first holiday in 26 years, didn't want to spend the first Christmas at home.

Tony from down under keeping on moving ahead

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Monday it has being 12 weeks  since my son passed away I still go on as if he is still here, got a letter late last week to say his ashes are finely in the ground behind his sister and we had a plague made up is what took the time , had to be sent to Melbourne the only people that  print Plagues, so me and my wife decided to go down to the Crematorium to see him and his sibling, mainly to make sure they got the printing right. Next Monday be 3 calendar months  11-9-17

My Mum wanted to come and see him as well, my sister bought  her , very sad, I was hopping my wife cry but she didn't, my mum and sister did, my eyes were wet, I gust wonder should it be  be a closure and let him go, will never forget him he is in out hearts for every. I was given 30 years back three baby angles, had to find an older angle for my son we finely did. when the last son was born back in 88 Chris would of being 2 at the time, we took some pics of him nursing his baby brother and now the baby boy angle is being nursed by Chris's angle and his two sisters beside him.

We also found a star that in on the top glass shelf and the four of them on second shelf, the star is a light and turned it on late Tuesday afternoon and the stat had a glow to it very touching indeed.

Mick a question can I post the pic of my sons plague on the next post,????

Only a week and couple of days before we head off for our very first holiday looking forward to get away with my wife .

 

Tony from down under keeping on moving ahead

 

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We are on our first holiday, last holiday was 6 months and 26 years ago , Moffat beach Caloundra, I thought it was in January before our son started school, my wife said it was Easter time  and booked a house a block away from the beach, who would take pets, I can understand now why we went in the cooler months, it is quite hot here in Caloundra . Tomorrow be a week since we have being here  and three days to go , coming home on the Wednesday, glad the unit has air-con making the most of it , leaving it on all night , the unit  is in a perfect stop for ship spotting, silly me forgot my big SLR digital camera, has a 1400mm zoom lens, coming back in mid July cooler months .

Chris didn't like going to respite when he was younger, he had no choice I had open heart  surgery back in 2002 , as he got older and worse with the condition and needing ventilation 24/7  no one would take him in because he was high needs, only the hospital if we lost power for over 12 hours.

I have three baby angles for our babies that died 33 years back , and found an angle that would suit Chris, the angle on the left is the first daughter she was born in 1984 and died a few months later , the angle on the right is the second daughter, she was stillborn at 35 weeks, 1985, the bigger angle is Chris he was born in 1986, perfect baby till a mistake having ear surgery  bought the MD out early..

And the little angle Chris is nursing is his younger brother, he was born 1988 , never came home from hospital , died 6 weeks later from the condition I have,didn't know at the time, the doctors said only a one off  keep trying, I didn't know till 1997 when the special  test came to Australia, finding out I had a condition that caused heart defects in children , didn't take the news too well.

Thought be nice to have a star that lite up to give the affect of the Christmas star some thing we can bring up with us on the holiday .

With Chris's Plague in the ground at the crematorium in Brisbane and  coming home from our holiday after winding down be some sort of closure, didn't want to have the first Christmas at home on our own ., in 12 weeks we will have a special thing for him play his favorite music , start winding  down, he will never be forgotten , we pictures of him on the wall and getting a smaller picture framed  so I can have on my computer table in his room.

My journey nearly coming to an end, he be in our hearts forever.

I have heaps of good ship pics will post the on Camdale.

Tony from down under keeping on moving ahead

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Taken from baclony at Caloundra.jpg

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Holiday is over and back home,it was a good break, no way will we going back in summer, going back in August next year, make sure I bring my big camera , there is another week in March next year paid by Montrose disability support center Brisbane  in one of their units down the Gold Coast, they give to parents that have lost their disabled  son or daughter .  

Christmas day was 16 weeks since our son passed away, we re going on New years day 17 weeks to see  Chris and the other children , 4 months on the 11 of Janurary

I don't know if anyone believes in super natural stuff, Thursday we bought a lower computer table  ,our sons table was built for him in his wheel chair , too high up for us in the computer chair., when we  were sorting out the wires I pulled the plug on the router, lost all Wi-Fi  and inter net collections . My wife reset to factory setting  and that should of lost all his setting he had , she gave up and decided o turn off the router scared that it would stuff up the router even more, I prayed to my son before going to bed Thursday  night. There only was two lights showing Friday morning my wife turned on the router, to our shock all lights were there and same with his Wi-FI page all she had to do was log on and bingo, we can't explain what happened over night.

Wires are still there can't seam to hide them , anyway his computer table is getting a whole new lease of lift,, I pulled the table apart and turning it into adjustable  saw horses so I can bolt two or more modules together , making it easier to nail track down, do the bus wiring and cut the track between the modules saving  in getting a sore back, progress on my Camdale page.

Only a few a couple of days left to end 2017 , will see everyone in 2018 , have a great new year.

 

Tony from hot down under keeping on moving ahead

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