Darren's Story. part 1

The loss of my son Darren through natural causes is a story of love and devotion by all of His family and friends.

Darren was born with Downs Syndrome and lived a life that was filled with his love for others and in return, Darren, was given love and friendship from not only his close family but from the many people he be-friended, they became his mate's, girlfriends (all Darren's female friends were his girlfriends) and surprisingly he could remember most of their names.

A life that we as parents could not fully understand because we as a family only experienced what we would see on the outside, never really getting the full understanding of what was going on in Darren's mind and body.

It is a sad but beautiful story.


Darren's Life Experiences.


Darren was born on the 12th of April 1968 and passed away on the 20th of April 2012.

Darren arrived on the due day with no complications for him or his mother, or so I thought.

After the birth I had to go back to work but called back later that day. I arrived at the ward at the Queen Alex hospital to see Margaret (mother) and Darren, to my surprise and anguish, there were doctors and medical staff around and beside the bed, discussing some sort of problem.

There seemed to be some sort of medical condition afflicting Darren that the medical staff wished to discuss with Margaret and I.

We were told that Darren was Downs Syndrome and that there were problems with his major organs. The doctors explained to us that Darren may have a severe handicap and that his life would be complicated by his condition.

As parents we had not even heard of Downs Syndrome and in the general community it was not talked about, so this was all new to us.

The doctors felt that we would not be able to cope and that we should consider giving him up to the state and not take him home.

This news was a big shock and body blow to Margaret and I and it took a while to absorb the condition they were describing and ramifications that would confront us down the track.

We took in the information that the doctors were spelling out and tried to make some sense of it all, I was getting lost with all the details and needed to sit down and think about what it all means, to us as parents and to Darren's needs and his life going forward.

Margaret and I discussed the issues that the doctors described to us and we both agreed that unless Darren's health became dire we would be able to give him a good life with us in our own home and we relayed this to the doctors. They said "it was our decision and they would offer any help needed to monitor and assist in the Darren's welfare and medical needs".

Margaret and I were quite adamant that we would be able to handle Darren and that we wished to take him home when he was medically fit and was able to suckle properly and so it was that after 10 days Darren was passed medically, he was feeding ok and with medication for his heart he would be able to live a normal life.

One doctor's words of encouragement a few days after Darren was born have stayed within my mind all my life. The doctor said, "there would be problems down the track medically, socially, physically and educationally but overall you have a very special boy and with a good dose of love and affection, Darren will live a happy and contented life, at times in his own world but will always be loved by many".

Those doctor's words ring so true and the love and care that Darren has experienced throughout his life from his family, his many and devoted friends, his mates, they have all helped to give Darren a truly remarkable life that we and him can be proud of.

Baby to Boy.

Darren was our special baby,a growing boy and his journey through life was a load he carried in his own special and unique way. His journey had many set-backs, was filled with happiness, adventure, some very scary moments with health issues, frightening at times for Darren and us but was entwined with unforgettable and tear jerking moments that filled us with laughter, tears, anguish and so many lovely times.

The decision to bring Darren home was the best decision we ever made, it filled the family with buckets of pride and love.

Darren life as a baby was not the filled with hardship and heart-ache, that so many people told us would happen. He was a normal baby in all respects, putting on weight easily, no problems with his hands, arms and legs and the holes in his heart were not causing him any problem. Regular checkups, showed us that as parents we were on the right track. We would take Darren to the heart specialist every month for a check-up and the results were always fine considering his condition.

Darren was a good sleeper, loved his food and all in all the perfect baby, he didn't cry a lot, was easy to manage and was doted on by his grandparents and our many friends, we had no medical troubles and according to the doctors he was progressing well.

Discussions between Margaret and I concerning additions to our family were bandied around and we took advice from doctors and experts, who told us that there was zero chance of the next baby being Downs Syndrome positive.

For the first two years of Darren's life we lived in a two-bedroom house on a dairy farm and to make ends meet I would do part time work for the dairy farmer in addition to my regular job as a bus driver.

Darren was getting stronger and would crawl around in a shuffling way a bit different to other babies but it worked and he was happy and contented and was also trying to talk.
When Elizabeth (daughter) was born, Darren was over joyed and he doted on the new born and as Elizabeth grew up so Darren had a play mate.

The Mainland Experience.

We decided to go to the mainland (the big Island Australia) and I would look for work in the coal mines in New South Wales and would stay with my sister if I got a good job, if not we would just treat it as a holiday.
We would be sailing from Devonport on the Princess of Tasmania ferry. The Holden station wagon was loaded to the hilt with gear, we also had more stuff on the roof rack. We said, our goodbyes to the family and Margaret, Darren, Elizabeth and I headed north to Devonport, where we would board the ferry that night for the trip to Melbourne.

The crossing of Bass Straight was uneventful, Darren was scared at times when the ship rolled a bit but he had a ball and the staff on the ship spoiled him rotten.

Arriving in Melbourne in the early hours of the morning, we departed the ship and headed for Sydney via the Hume Highway. We had to stop frequently for Darren to go to the toilet or be sick or if he wanted food. Darren was not to fussed with the long drive and took in the scenery and became very excited with the big trucks and the noisy motor bikes.

Elizabeth and Darren got on quite well during the road trip, Margaret was longing to put her feet up and sleep in a decent bed as she was getting close to time for our third child.

Joanne was born in Maitland, NSW and Darren was again over joyed with the new addition to the family, he doted on the baby but we also noticed that he was with-drawing and would spend a lot of time by himself, something to do with not getting all the attention.

We visited most of the scenic spots in Newcastle and around the Hunter Valley, Darren was not impressed with the water and beaches but liked to visit shops and was starting to talk to people and not be so shy. Darren was walking now at three years old and the days of him sliding around the floors on his bum were a thing of the past.

Work dried up around Maitland and we decided to head back to Tasmania and as we made plans for our return we had lots of calls from Margaret's parents to hurry back as they wanted to see the new baby and we were a little concerned that Darren, was not handling the heat in NSW too well.

Darren's reaction to the additions in the family, when, Joanne, Belinda and Baden were born. Now Darren had competition for attention and there were many times when he resented the in-attention and would get angry an aggressive, the other kids didn't help matters as they would tease him.

These altercations only lasted a short time and Darren would worm his way into forgiveness and everyone would be happy again.

Margaret and I felt it was important to give Darren as much integration with the other kids so he would not feel left out, of course, he was given special treatment but he handled the extended family in his own way and he loved and cherished them all.

We moved to the town of Zeehan on the West Coast of Tasmania after I obtained a job at the Renison Tin mines.

Darren attended the Talair Special school in Hobart and this involved a road trip of 800 klm round trip, once a fortnight. He boarded at Yalambi Hostel, he didn't like being in the school or the hostel but eventually accepted that this was a part of growing up and he made many friends and some enemies but overall I think it was a positive for him.

Darren stayed at the school for nearly 5 years but eventually it became all too much for him as he was becoming a bit of a handful for staff at Talair.

I can recall the many times that the trip to Hobart was filled with drama the whole journey with kids fighting and Darren so upset that it was getting impossible to console him.

Many times I had to physically remove him from the car, he would hold onto the door handles, scream, swear and curse and get himself in such a state eventually he would just collapse on the ground. The girls would be crying and saying, "Dad leave him he doesn't want to go". I had to tell them that is was best for Darren and what else could we do, trying times for all of us.

We bought some land in Pelverata, south of Hobart, near Margaret parents property and built a house. We left the west coast with tears in our eyes, for we had many friends that came to say goodbye and Darren would tell them all in his own way,"I will miss you" and give them all a hug and a kiss, very emotional time for everyone.

Whilst the house was being built, Margaret, Darren, Belinda, Baden and myself lived in an old renovated pickers hut. The two girls Libby and Joanne were staying with the grand parents at Maydena in the Derwent Valley until the house was completed.

Darren continued at Talaire Special school but would travel up every day and come home with a teacher at the school, Biddy Duggen, she got on so well with Darren and they became great friends.
Later he went to the Huon special school and as he was getting older he attended workshops to help him pass the time, now in his teens he was becoming a bit harder to handle but his health stayed relatively normal except for visits to the specialist for his heart.
Darren really enjoyed the school bus trip to Huonville and made many good friends and would tell us about his mates and get very excited and animated.

School and the workshops were not Darren's great joy, he loved the bus ride but gradually he became very uncooperative with staff and was causing a few problems, likewise at home he caused problems with the other kids but he liked the farm life and would help with the finishing touches to the house, get the fire wood and visit the neighbors.

Darren had some great times on the farm, we would kill our own meat from the flock of sheep and when this was happening, Darren was nowhere to be seen and would not help, stayed inside with his coloring in books as he could not stand the site of blood.
Likewise when digging the potatoes, Darren, did not like to get his hands dirty and would pick up the spuds one by one and brush the dirt off the potatoes then wipe his hands on his clothes, later telling his mother that he did all the work when asked how did he get his clothes so dirty.

Life on the farm was good for Darren, he had his chores to do, he would help his mother around the house, help me with the fire wood but most of the time he would spend in his room or by the fire filling in coloring-in books and listening to Slim Dusty.

Darren had a real soft spot for Slim and his country music, he would spend hours playing tapes, he would also spend time pressing the fast forward or eject buttons and over the years there were many cassettes and radios that were discarded due to the non-function of buttons.

Darren's mother and I went through some rough times in the mid 90's and we eventually separated and divorced. It was all my fault and some decisions relating to work put a lot of pressure on me and the family and I lost the plot for a year but kept in touch with the family.
I regret some of the decisions I made back then that broke the family up.

I moved up the Derwent Valley and lived at Lachlan, where I developed a passion for horses. Previous to this time the only time I spent with horses was with my Dad on a small fruit farm at Allen's Rivulet, where I learned to work the land with a draught horse, named Bonny and would spend a great deal of time behind the plough, working the Raspberries and Black Currents and pulling firewood out of the bush.

I got right into horses in Lachlan, learned to ride, train and trim and shoe and joined the local horse riding club, eventually I ended up leasing a 60 acre run down farm at Lachlan and I spent quite a number of years there.

Darren and the girls would come up and ride the horses, Darren would sometimes stay overnight but he didn't like being away from his mom for too long, we had some great times on the farm. I didn't think I would ever get Darren to sit on a horse but he plucked up courage one day and rode the horse with me leading him.

Darren had a lovable nature and a friendly attitude to everybody he met, although he was hard to understand at times you could have a conversation with him and most times he was a happy go lucky boy and a man.
Many of his friends called him Jazza, he would relish the attention he received, shake their hands and tell them to have a good day.

Darren lived with his mother in Margaret Father's house, after he passed away and I would often drive down to Pelverata to visit, during this time there were weddings and break ups with the girls and Darren had a great time with his brother Baden, who was a bit of a legend playing football and cricket and Darren with his mother would attend the games. He had a great time with all the players and would be a great barracker, from the sidelines giving his opinion on anything and everything.


In the early 90s I was still working with horses and breaking them in, training people to ride, still shoeing and trimming. It was Christmas in 1994 that things on the farm went real sour and it was a terrible and stressful time for me and the rest of the family, it is a long and bitter story that I will tell another time.

I want this story to be about Darren and his life.

Suffice to say I lost my daughter Belinda, in a violent crime, she was just eighteen.

Through all this Darren had a hard time of coming to terms with the loss of his sister Belinda and would tell us every day that she had gone to heaven and she was a star in the night sky.

This time was also very hard on Baden my youngest boy, the event affected him greatly and he got lost a bit with drugs and booze and I feel that in some ways he never come to terms with losing his soul mate Belinda.

I stayed with Margaret and the kids at the farm at Pelverata but eventually moved back up to the farm at Ironstone Gully road, Lachlan.

Darren went about his life mainly doing his own thing, like visiting the neighbors down the road (he developed a very special relationship with Bobo and she became his second mom).

He would spend his time shopping with his mother or listening to country music or coloring in his many picture books.

Darren's health stayed reasonably stable but he was putting on weight and the most exercise he got was walking about 1 kilometer return, to Bobo's, down the road, he would walk, stay for hours, then return home. Sometimes Darren would take a short cut down through Pete and Bobo's paddock, this short cut turned out to be major problem in his later life.

Darren was walking down to Bobo's when he tripped and fell damaging his ankle and knee, he could not walk, so he sat there in pain singing out loudly for his mother but no-one heard his cries for help.
It was late in the evening that Margaret called Bobo to send Darren home for tea. Bobo said" I have not seen Darren; he hasn't been here". Panic stations by both Margaret and Bobo and they decided to search the paddock from both ends.

They heard Darren's cries before they actually set eyes on him, he was in a terrible state with pain and had been crying but he was over joyed to see his mother and Bobo.

They managed to get him from the paddock to the road and he was put in a car and taken to the doctors at Huonville, his ankle was twisted but not broken and his knee cap had slipped to the side of his knee, the knee cap was put back in the right position with a lot of swearing and cursing from Darren and then bandaged.

After this Darren never walked down through the paddock again and from memory, I don't think he ever again walked down the road to Bobo's. He was in a wheel chair for a while then slowly as his leg continued to heal and he could put weight on his ankle and knee he opted for a walker to aid in his walking.

Darren confidence in walking became steadily worse and he would favor his right leg, use the walker all the time whilst home and use the wheel chair when he went shopping with his mother.

When things went wrong or something was broken it was never Darren's fault, even though he did it, he would blame someone else, as he did when asked how he hurt his leg. He replied "Not me, Pete's paddock" was to blame, not Darren taking a short cut through the paddock.

The many cassette players that got broken by Darren's over use of the buttons was always blamed on someone else, sneaking all the cheese out of the fridge and hiding it was also never Darren's fault, always someone else was to blame, yet the evidence would be found hidden under his bed.

Margaret would confront Darren with the evidence, he would say" not me" Joanne, Baden or Elizabeth would get the blame." Don't lie Darren" Margaret would say," I know it was you".

Darren would drop his lip and say to his Mother in a teary voice "I sorry but I loves ya" and put his arms out for a cuddle and in that context what could you do but forgive him but he played the same tune many times.

Darren was still putting on weight, he was a good eater of home cooked meals but he also loved his chocolate, sweets and cheese. He could be very sneaky at times and he would hoard food in his room, had been known to eat 4 or 5 slices of bread swamped with tomato sauce.

This love of tomato sauce changed dramatically when he had a few bad bouts of gout and he gave up tomato sauce forever after it was explained to him that it was the sauce that was giving him gout.
From that day on he refused to eat tomato sauce and would say a very firm "no" if asked if he wanted sauce and then follow up with, "sauce is bad" and then point to his foot and say" all better, no, no, sauce".

Life continued on for Darren with his normal visits to the super market and shops in Huonville and playing his music. He found a new way to spend his time which involved playing games on TV with a play station, he would sit in his wheel chair playing tennis or sword fighting and he became a pretty good player, at ten pin bowling and he became very animated when he was a winner.

On the occasion of Darren's 40th birthday we gave him a big party at the Pelverata Hall. Darren arrived to be greeted by all the residents of Pelverata and all his family and friends, some 50 odd people attended. We had a barbecue, balloons, lots of sweet cakes and soft drinks and of course a birthday cake with 40 candles.

Darren had a ball sitting in his wheelchair, talking to everyone and having his photo taken with family and friends.

Darren in his usual way on these special occasions, would put his arms out and say, "a bit of shoosh, I've got something to say" he thanked everyone for coming then everyone shook his hand and gave him a cuddle. He finished off by saying "I'm tired and I'm going home but you all party on"

I remember another occasion that was a great insight into Darren joy of life, when there was a party on, he loved the music and the atmosphere and of course all the attention he received.
Elizabeth's wedding was an occasion that still to this day brings good memories of Darren, doing his wheelchair dance on the floor, he would get so excited, his arms would be in the air one minute, then he would put his hands on the wheels and rock backwards and forwards and he would do this while ever the music was playing.

Many of his friends would grab the wheelchair and rock and roll him round the floor, it was a joy to see him so happy and enjoying his moment in the lime-light.

Libby's (Elizabeth) new husband Gus, was Darren's new found best friend and Darren would often say "Gus he is the man, he is my mate".
Likewise, with Jo's husband, Adam, Darren, had a special relationship and would look forward to visiting their house in Huonville. Darren would call Adam the "Barman" and would remark on Adam's liking for a beer or two. "Yea" he would say "sucking on the beer, bad for you".

Darren had a special relationship with Jo and her daughter Kayla and he would always be pleased and happy to see them and give them cuddles and kisses.
Jo was Darren's favorite and when she visited he would ask about the Barman (Adam) and ask her where he was and what he was doing and of course Jo, always had a special treat for Darren in the way of chocolate, rollies, he loved these sweets and it was not very often that he would share them, you might get one or two but the rest would be hidden in his bedroom.

Another quirk with Darren was his ability to know if any of his hoard of sweets had been touched or was missing, likewise with his collection of movies and musical CD's, everything had to be in order and he would spend hours, re-stacking and checking if any were missing.

He would let everyone know if something was missing and would put on a turn of shouting and swearing and blaming everyone.

Later that same year I moved down to Margaret place at Pelverata after separating from my partner and the farm at Lachlan. In early May I brought my caravan and planed on staying there until my trip to the mainland, at the time I was working on a dozer at Nugent clearing land for tree plantations.

Darren was in some ways happy to have me around although we clashed at times over his hoarding of food in his bedroom, his health was stable but he was putting on weight and he was having trouble putting any weight at all on his bad leg and the redness in both his legs were a cause for concern.

Darren never complained about his pain but would swear and curse if he happened to bump his leg, it was the same in the shower, major drama's to give him a wash, he would tell his mother that he was sore everywhere and not to touch him.

Margaret and I took Darren to some specialist to see what if anything could be done about his sore knee, we needed to get x-rays and scans of his knee and wasn't that a drama, for the doctors and staff and very embarrassing for us as parents.

Darren would scream the house down and refuse to co-operate, in the end we had to abandon the attempt for x-rays as it was just to upsetting for Darren and everyone else.

In the end the specialist advised that given Darren's medical history, his weak heart, enlarged liver and very high levels of iron in his blood (hemochromatosis) an operation of any sort would be life threatening to Darren, so we abandon that idea and looked around for some type of brace.

The brace worked for a while then Darren just refused to have it on his leg, he also made a stand against doctors or nurses, refusing to cooperate and would get quite irate and scream the house down and let go with some very choice words.

These altercations with Darren and the doctors was upsetting as we were only trying to do the best for Darren and make his life and his pain a little better, frustrating to say the least, it was also hard to get through to Darren that we were only trying to help but no matter how much we tried, we could not succeed in getting him, to work with us.

Darren for years was an ardent Essendon Football Club, fan and a great admirer of, Kevin Sheedy, the coach but when Sheedy, got the sack Darren, shifted his loyalty to the West Coast football team.

Both Margaret and I were fans of Essendon and when games were on TV he would tell everyone that "Essendon is shit, Sheedy got the sack, there gone Mate, West Coast beat them".

Darry would be watching TV and if Eddie Mcguire came on, he would cop an earful from Darren, telling Eddie "You lie, that's wrong, wrong, I'll fight ya". then put his fist up at the TV and say "Come on, I'm not scared of you". then finish with a few choice words.
Shane Warne was another who copped an earful from Darren and he would tell everyone in the room, "Warny, he is an ass, he suck the seed, he's gone mate, he's in a hole".

After many suggestions, from reviewers, that the story was a bit too long, I have reduced it to a, two part series and will post the rest as part two.

Thanks to all who have read "The Story of Darren", so far.