Saturday, 30 April 2011

Why Cameron is No Ordinary Kid - Part 7

'Cameron has Meningitis.' 'What?' 'Meningitis.'  'How did he get that?'  'Here I'll show you.'

The nurse stood monitoring Cameron as Michael showed me the medical books and their complicated medical descriptions of what Meningitis was. I was so confused, how could Cameron have Meningitis? I remembered hearing about Amoebic Meningitis when I was a child. Some children swam in stagnant water up north and they all got really sick. I don't recall if they died but I know one of our friends Mum's became very concerned about water and it not getting up her children's noses. My brain was spinning out, Cameron hadn't been in stagnant water.

Another nurse came in and explained that there were different types of Meningitis and they were now waiting for the next test results to tell them which kind of Meningitis Cameron had. He took us out to a photo board just outside Cameron's room and explained that there can be serious outcomes from Meningitis. He pointed to photos of  past patients who had lost limbs, fingers, toes, a hand, their nose, an ear. Oh my .......... what were we dealing with?

We had to let our families know what was going on so being that this was in the days before we all had mobile phones we took up residence at the public phone in the corridor and started phoning, We called Michael's parents and his sister who were in Perth. We called my sister in Kalgoorlie who was already making plans to get to Perth as quickly as possible. Our dog was dropped off at the dog kennels for a holiday. We phoned our friends at home to let them know what was happening and we phoned my parents.

That was such a hard phone call. We didn't want to overly alarm them because they lived 12 hours away and they needed to drive safely but we needed them to realize that they needed to come now - they may never see their one and only grandchild again.

We both had to phone work and explain that we didn't know when we were coming back and when all the calls were done we headed back to sit with Cameron. We got some breakfast from the hospital cafe and then it was time for Michael to sleep and for me to do my first solo shift.Pretty soon I was told that they were organizing for Cameron to have a brain scan.

It was quite a large group who prepared to wheel Cameron around on a bed for his scan. We didn't go anywhere now without equipment. Cameron was taken off his oxygen and hand pumped while they lifted him and resettled him. All I could do was stand back and watch. I walked along behind like a fifth wheel, I wasn't sure what I was supposed to do. One nurse hung back with me and showed me a seat outside the department. I was told it wouldn't take long and then I was left on my own.

They took much longer than they had said. I fiddled and watched people. I counted carpet squares and ceiling panels. Finally a nurse came out to tell me that they had had to stop everything and then start again after Cameron had had a massive seizure. I still couldn't do anything, I was left again.

Finally the bed rolled around the corner and we were reunited. The nurse apologized - she shouldn't have left me alone but she was a student and she wanted to see what they were doing. We needed to move quickly to get Cameron back into ICU. This time I knew how to keep out of the way and observe their routines.

I settled in watching Cameron, holding his hand, talking to the staff and watching the world go past outside the window. Eventually a Doctor came and told me that he had received the results of the brain scan and could I please go and wake Michael up so he could speak to us both. Everything went into fast forward as I raced down the passage to wake Michael.

Cameron and the Royal Wedding

I didn't think I had anything to blog about the Royal Wedding. My blog is about Cameron and our family so how could Kate and Wills wedding get involved. However as I wandered about the house this morning I started to giggle about Cameron and the Royal Wedding.
The broadcast started at 3.30pm, with the bride due to arrive at 6pm, so I sat here with the kids watching guests with dubious hats arriving whilst playing Guess Who with one and massaging the feet of the other. It's was Cameron's smelly feet I was rubbing. Cameron seemed quite content to watch all the guests walking into the church. We all lost focus during some of the long interviews and consequently did a bit of channel hopping looking for more exciting action.

Eventually we settled on the ABC's broadcast and watched as William and Harry left Clarence House and arrived at the church. Cameron continued to sit here and watch. I answered a few emails and Cameron continued to watch. Zoe wandered off to another TV and Cameron continued to watch.

Finally the Bride stepped out of her car in her beautiful dress and by now Cameron wasn't going anywhere even the arrival of his Auntie and food didn't move him off his seat for longer than a couple of minutes - he really likes food. (and his Auntie)

The wedding service began and whilst us girls sat here discussing beautiful and not so wonderful fashion decisions by some of the guests Cameron sat eating and watching.

Finally the newly married couple appeared on the steps of the church and Cameron's attention seemed to increase. They climbed into their carriage and took off waving to the crowds and Cameron waved back to them. He waved and he waved. He was clearly enjoying his first royal wedding and felt very much a part of proceedings. His smile was huge.

He watched the families arrive at Buckingham Palace and even sat through us channel surfing again as we waited for the much awaited Royal Kiss.

Finally the doors opened and out they came, Cameron watched as William and Catherine stood on the balcony waving to the crowds and he waved back to them. He was so excited and if I remember correctly he clapped a few times too, clearly he approved of the kiss.

Why Cameron is No Ordinary Kid - Part 6

We were lead into an isolation room and there he lay, our tiny baby with leads and tubes running to a wall of machines mounted behind him. Machines were monitoring all his vital organs. Machines were administering medications and machines were breathing for him. He looked asleep but it was not a natural sleep. 

Machines and procedures were explained to us but we didn't understand. A nurse stood at the end of the bed and didn't leave the room. ICU is 24 hour monitoring and if the nurse needs to leave the room to run a test, find equipment or medication or take a personal break another nurse must be at the bedside before they leave. We had grave looking doctors asking questions, writing notes and having conversations. Everyone was introduced to us but it was all too much to take in. We were at saturation point and in utter shock.

A nurse asked if we had eaten and we realized that we had not eaten anything for 30 hours. They keep a supply of frozen meals for just these situations and quickly two meals were chosen and heated up for us. We moved into a side room to eat and exhaustion started to creep over me. I'd been awake for almost two days.

We returned to Cameron and sat next to him. Every time a machine beeped or beeeeeeeped we jumped. Everything was so scarey. Could we touch him, could we kiss him, could he hear us, was he with us?  We decided that we would not leave Cameron alone, one of us would be with him at all times. 

Finally Michael convinced me that I needed to sleep and he would take the first shift, I didn't want to leave Cameron or Michael. Finally I dragged myself away and was fighting back the tears as I walked down the passage to our room.

I didn't really sleep, I tossed and turned and started to have the recurring thought which didn't leave me for several years - This is all a dream, I am going to wake up in my bed.

As soon as light started to peep through the curtains I got up and had a shower. I was desperate to wash my hair and had no idea there were rules about bringing electrical equpment into the hospital so I was rather stunned when a nurse suddenly appeared when I started using my hair dryer. I learnt quickly that all electrical appliances must be checked by the hospital electrician and don't make loud noises when the patients are sleeping.

I went back to Cameron's room to find everything as I had left it. Michael was sitting there beside him and Cameron's machines were still monitoring him and keeping him alive. However things had developed while I was gone. Cameron's test results had returned and Michael had medical books which the staff had given him to try and explain why our son was so sick.

Friday, 29 April 2011

Why Cameron is No Ordinary Kid - Part 5

I was incredibly cold as I sat there in the plane totally lost and confused. The pilot noticed and gave me his jacket. Michael was totally distracted with the pilot to talk to, the cockpit to investigate and the view to take in. I sat watching as the doctor and nurse monitored Cameron and exchanged cryptic comments which the pilot picked up on and asked about. Everything was glossed over, everything was fine, nothing to worry about. Hmmmm.

Finally we landed and much to my shock it was dark. I had completely lost track of time. We taxied into the RFDS hanger to where an ambulance was waiting for us with a taxi. It was explained to us that the ambulance did not have space for all of us so Michael and I were going in the taxi. I panicked. I didn't want to be seperated from Cameron but we had no choice we needed to move quickly.  Cameron was transferred to the ambulance, we jumped into the taxi and took off following the ambulance down the freeway.

This was our home town, we'd been down to visit only a few months earlier. My brain started to disbelieve what I was seeing. How could I be here, I'd been at home this morning, life was normal this morning - what was happening? You don't get up and decide to be in Perth that night, it takes planning, packing, organizing. It was dark, the city lights were twinkling on the river and I just wanted to close my eyes and wish myself home. But my eyes didn't leave the ambulance, my stomach was in knots. Was Cameron alive? Was he okay? What was happening in there? I was scared.

We pulled into the hospital emergency carpark and quickly rejoined Cameron and the RFDS crew. We went into emergency, through the waiting room with eveyone staring at us and straight to the lifts. From the lift we went straight through to ICU and that is where we were stopped. Cameron went on without us and we were shown to a seat. Panic again, where are they taking him? What is happening? Why can't we go with him? We just had to wait.

I have no idea if we waited 5 mins or an hour. Time no longer made sense. Finally a doctor came and sat down with us and explained that Cameron was having a lumber puncture amongst other tests and he was being settled into his bed. He described what we were going to see when we went into his room in an attempt to cushion the shock. However we couldn't go in yet, again we had to wait.

Hospital staff came and went processing paperwork and organizing accomodation for us in the hospital.  We retold our story so many times that it became tedious. Did we want to be a public or private patient? I don't know, I don't want to be either, I want to go home. We were polite and calm whilst lost and bewildered.

Michael's family were there to support us but eventually they left, there was nothing they could do. We were shown our accomodation and by now the fear of going into ICU  and dealing with whatever was in there was growing quite strong. We decided to hide in our room, it felt safe, and asked if they would let us know when we were able to go in to Cameron. But the waiting became unbearable so back we went to the seats.

Finally the doors opened and it was time to go in. There were mixed emotions of relief and fear. What were we going to see when we walked around that corner? Holding each other for strength we took a deep breathe and walked around the corner.

Thursday, 28 April 2011

Easter Egg Escapades

There are times when living with Cameron cracks me up. I'll tell you about the first time he locked me outside the house another day but being that we have just had Easter and Cameron is convinced that he should consume every Easter Egg in the house I have been reminded of some of the funny Easter stories I have about him.

Cameron's first Easter was spent in ICU  and we were given so many Easter Eggs that I kept the nursing staff in chocolate for about a month. Cameron's second Easter was wonderful, he thoroughly enjoyed his first Easter Egg as you can see at the top of this post.

From his third Easter until last year every time Cameron touched a wrapped Easter Egg everyone would yell, 'Stop' because he would consume the egg and wrapper every time, unless someone unwrapped it for him. It didn't matter if it was a tiny egg or a big egg - chomp - wrapper and chocolate. It wasn't his fault, he just didn't understand and his fine motor skills just weren't refined enough to peel an egg. Usually I'd end up with a chocolately, mushy wrapper that we usually had to fish out of his mouth whilst being bitten.

Those fine motor skills have really improved over the last 12 months and this year he has snuck several eggs, unwrapped them, abandoned the wrapper and wandered through the house munching the egg. Unless I've bumped into him I've found the abandoned wrapper and then headed off around the house in search of the egg. It's like a back to front Easter Egg hunt.

This year he's been trying to steal an Easter gift for someone else's child, I've lost count of how many times I have walked into my bedroom and found him standing there trying to figure out how to break into the packaging. I don't like my chances of getting it to the recipient in it's original condition and I say this because .........

One Easter I had put a  big AFL Easter Egg at the front door so I didn't forget to give it to our friends children when they popped by that afternoon. There was a locked door between Cameron and the egg so I didn't give it another thought until about 30mins before our friends arrived. I don't know how Cameron got to the other side of the locked door but there he was with a very chocolatey, satisfied grin. There was not a crumb of chocolate left to give the guests so I just had to stand there with the box in my hand and a sincere apology.

Most eggs don't last very long with Cameron, they head straight for his mouth as soon as he receives them, unless their rescued. Chocolate Bunnies become instantly disabled with crushed legs and eggs crumble under his strong enthusiastic grasp. This year the Easter Bunny brought a large, hundreds and thousands covered egg and within minutes he was standing there loving every bite, until we stopped him. Yes, there were hundreds and thousands everywhere but it was worth it to see the smile on his face.

However my favourite Easter Egg story is about 4 years old when Zoe discovered that she was the brains and Cameron was the brawn. One morning I woke up to the sound of happy children in the kitchen. Something was not right. Upon inspection I found two very happy children sitting on the kitchen floor enjoying an Easter Egg picnic. Zoe knew that the Easter Eggs had been put at the top of the pantry and she couldn't reach them so she showed Cameron where they were and encouraged him to retrieve them for her. He was rewarded with a chocolatey breakfast feast. Clever!

Why Cameron is No Ordinary Kid - Part 4

Suddenly the room grew away from me. All the people, the bed and my baby were so far away I could no longer hear them. My ears felt like they were full of cotton wool. A nurse turned  and before I knew what was happening we were whisked out of the room and into a small side room. The nurse sat us both down and uttered the one line I have never forgotten - '├Łou can't get sick, you have to stay strong for your baby.'

I often wonder why we let them remove us from the room, I wanted to be with my baby but we were no longer living in a world we knew. We had no idea what was gong on or what was about to happen. We were given drinks and left to wait. I have no memory of that wait, I think sometimes our minds protect us by erasing certain memories but as I write this the emotion of that situation is overwhelming me.

Finally we were told that Cameron had been stabilized and he was ready to be tansferred to the ambulance. The RFDS doctor who had flown us to Kalgoorlie announced that he wanted to stay with his patient and take us through to Perth. This caused some discussion and disagreement.I suddenly needed to go to the toilet - I'd been drinking coffee since we'd arrived and being that we were about to fly to Perth a bathroom stop was essential.

The staff started to transfer Cameron to the ambulance and then our next problem arose - what do we do with our car. By now my sister was home from work so Michael collected her and they drove out to the airport while Cameron and I drove out in the ambulance.

My sister watched as they wheeled Cameron out of the ambulance and across the tarmac and told us later that Cameron looked so tiny on the big bed, all coverd in white - he looked dead.

We met the pilot who enquired about our luggage. We had 3 small bags - we were only going to Kalgoorlie for a couple of nights, we were going to be home for Easter. He was relieved, apparently people want to take large suitcases on the RFDS planes and there isn't enough space. We all climbed aboard, Michael sitting up with the pilot and me sitting at the back of the plane, I felt like I was tucked into a corner. The doctor and nurse sat in the middle with Cameron and all the machines.

We took off not knowing when we would return or what was coming.

Wednesday, 27 April 2011

Please Wiggles, Don't Ever Retire

Yesterday I posted on This is No Ordinary Kid''s facebook page that I was not happy with Cameron.
This is what I wrote: Well, here you go, your first taste of my life. I was quietly working on my blog when Cameron appeared beside me with a DVD. I'd only just put a DVD on for him so I should have guessed something was wrong. On inspection I found the TV was now a radio, the DVD player tipped over and a DVD stuck in the door.
That's another Wiggles DVD I'll have to replace. Not happy Cam!

Afterwards a friend posted an alarming thought - Let's just hope The Wiggles don't retire. These few words sent a horrible shiver through me. What would I do if we didn't have The Wiggles? This is a thought I had never contemplated, they have always been there and I had visualized a world where they would always be there.

I have been listening to The Wiggles for over 20 years and watching them for almost as long. I had all their videos and now I have all their DVD's. The collection started with a cassette when I was teaching, then it grew to include a few CD's and videos when I was day caring. Now, in the mothering phase of my life, we have added DVD's to the collection. To contemplate a life without The Wiggles is horrible.

You are probably thinking this is a very strong reaction to a music group who sing to young children while wearing co-ordinating t-shirts. Without The Wiggles I don't think I would have any of my sanity left.

20 years ago I thought they wrote some great songs that my class loved to listen to and join in dancing and singing to. And I think history has proven me right, The Wiggles have gone on to incredible international success. But none of that matters now, what matters now is that Cameron loves The Wiggles.

The one thing that held Cameron's attention when he was young was watching The Wiggles. The one thing that would calm Cameron down when he was upset was The Wiggles. The one thing that would give me a break and a little respite was The Wiggles. And all that is still true today.

Cameron watching Wiggledance - today

Cameron has never liked watching cartoons or animated programs. He didn't understand live action shows or acted shows. He didn't understand characters in suits like Father Christmas or the Easter bunny, to be honest he was scared stiff of them. He didn't watch movies or anything else except Play School and The Wiggles. Why Playschool? Well if you think about it, both The Wiggles and Playschool have people talking to the camera so you feel like they are talking to you personally. They sing and dance, talk and joke. You can see their faces and read their emotions. It feels very real.

Now Cameron still doesn't like watching cartoons or animated programs. Buying The Wiggles Space Dancing DVD was a waste of money becasue it is animated. I also wasted my money on the Dorothy the Dinosaur DVD's - I really should have known better. He can now watch an acted show with live humans if the content catches his attention but given a choice he will choose The Wiggles every time. For a bit of variety he will throw in a Playschool DVD every now and then.

I hear Wiggles songs in my sleep, and I can discuss at length the changing dress sense of The Wiggles and the impact of Greg leaving and Sam arriving. I can show you when Sam started working with The Wiggles as Sir Sing A Lotta and one of the Captains crew. I have my favourite back up dancers and I know which adult dancers now, were little children dancing on the set. 20 years ago.

The Wiggles can never retire, what would I do, I live for new DVD's so my sanity can be calmed with a new set of songs and different entertaining moves. I couldn't survive listening to the same old DVD's over and over for ever, I've already listened to them over and over.. At this point in time it doesn't look like Cameron is getting bored with The Wiggles any time soon so I do visualize a world where I will still be listening to, singing with and watching The Wiggles for many years to come.

Please Wiggles, don't ever retire.

Why Cameron is No Ordinary Kid - Part 3

The hosptial staff and RFDS staff exchanged information and transferred Cameron from the ambulance into the plane. I boarded the plane leaving Michael standing there. As we took off I watched him drive off back towards town.

I didn't understand most of the medical terminology being discussed as we flew down to Kalgoorlie but it was very clear that Cameron was in a really bad way. Every now and then I was asked questions about Cameron's health and development, up until he got sick, and I was questioned at length about what had happened over the last 24 hours.Eventually I was told I should prepare myself because Cameron would probably need to be transferred to Princess Margaret Hospital in Perth.

We landed in Kalgoorlie and sat on the tarmac. We sat and we sat and the longer we sat the more scared I became. Finally we were told that there was a delay with the ambulance and it was safer to stay in the plane where Cameron could remain connected to the machines he now needed. Apparently the ambulances last call out had been to a stabbing and the victim had bled alot. The ambulance had to be washed out at the depot before coming out to the airport to collect us.

Finally the ambulance arrived and the transfer process happened. I climbed in and we drove to the hospital straight to emergency. This hospital was so different, this was a big regional country hospital with people everywhere. We transferred into a bed and then the RFDS staff went off to hand over to the emergency staff.

As I stood there next to Cameron I felt so alone and scared, I had no idea what was going on. I was watching Cameron and it occured to me that he was very still. I poked him and he took a deep breath. I stood there and kept watching. A little while longer he did it again and again I poked him and he took a deep breath. Nobody was with me, I was all on my own and I didn't tell anybody. People came and went, questions were asked and tests were run, medical history taken over and over again. It is one big blur.

Michael arrived after dropping the dog off at my sisters and our little family was reunited. We stood there next to our little boy as he lay on a big bed.and we didn't know what to do. Eventually we were told that the doctors believed Cameron had Meningitis and that we needed to be transferred to Perth where Cameron could get the medical care he needed at Princess Margaret Children's Hospital. For the flight to Perth Cameron needed to be intubated because the plane was flying at a high altitude and Cameron would not survive if he wasn't intubated.

Cameron was moved into the resus room and the room started to fill up. There were the emergency hospital doctors, the RFDS staff who flew us in and the RFDS staff who were going to fly us out. The ambulance crew who were going to transfer us to our next flight. We had the paediatrician who had been consulting over the phone and she had a group of trainee doctors. Plus, of course, we had nurses. There were two beds and we sat on the edge of one while everyone stood around Cameron on the other.

As everyone was getting organized Cameron took his final breathe. His little body decided it was just too hard and he couldn't fight anymore.

Tuesday, 26 April 2011

Why Cameron is No Ordinary Kid - Part 2

As we sat on the side of the road in the middle of nowhere we had to make a life and death decision, do we go back to town which was 30 minutes away or do we go forward to the next town that was 40 minutes away. At the time we were scared but we didn't realize that this decision was a turning point in our lives and dependent on which town we chose would decide which life we were then going to live.

After a discussion of the pros and cons we decided we would go forward because the next town had a small hospital. Your motherly instinct is to hold your child tight but we were about to drive very fast and we would possibly meet other cars and road trains so there was no choice, Cameron had to go back into his car seat. I sat next to him holding his tiny hand and telling him it would be okay. I'm not sure that I believed myself. I have no idea what speed we did but it was fast and we hoped a police car would pop out from behind a bush but of course the road was completely empty all the way.

We pulled into town and found the hospital. The carpark was empty, the place looked deserted. We jumped out of the car and raced up the stairs. We burst into an empty reception and stood there for a second not knowing what to do. All of a sudden a doctor appeared out of nowhere and scooped Cameron out of my arms. We followed him into emergency and stood and watched as he did everything he could.

We stripped Cameron off and had pedestal fans blowing on him. The doctor ran tests and put him on a drip, muttering to himself that he hated it when babies did this to him. He phoned the GP who had been treating Cameron and the doctor in the Kalgoorlie Hospital who had been consulting and after a discussion it was agreed that we were now a top priority transfer and the Royal Flying Doctor service was called, we needed to be transferred to Kalgoorlie.

This doctor guessed that Cameron had Meningitis but we were in a little country town hospital and he did not have the medications he needed to treat Cameron. He did everything he could.

Cameron was now collecting medical attachments - drips, monitors, etc. We needed an ambulance transfer to get out to the air strip. The call went out for the towns ambulance and there was a slight problem - it was lunch time and the ambulance was at the local mechanics being serviced. The garage was locked. It took a while to find people and retrieve the ambulance but eventually we were ready for our first ambulance transfer of the day.

There was just one more problem and you should have seen the look on the doctors face when we said - 'There's a problem, we have Bo in the car.'
'What? You left a child in your car this whole time?'
'No, a dog.'
He was so relieved but this was a big problem. We couldn't leave the car there in the hospital carpark because what would happen to Bo. Poor Michael had to make the sacrifice and drive to Kalgoorlie, we had no choice but we wanted to stay together.

The ambulance arrived, Cameron was loaded and I had my first ambulance trip, Michael followed in the car to the air strip. We stood on the tarmac and watched as the RFDS landed and the crew walked towards us. Imagine my surprise when it dawned on me that walking towards me was the nurse who had helped to deliver Cameron 5 1/2 months earlier. So there in the middle of all this fear and craziness I was hugging this wonderful woman and feeling so happy to see a familiar face.

Why Cameron is No Ordinary Kid - Part 1

I really should explain why Cameron is No Ordinary Kid.

Cameron was born healthy and beautiful, he was achieving his milestones and bringing immense joy into our lives. We finally had the child we had longed for so much. Then everything went terribly wrong.

It all started with a cold which wasn't bad but it was enough to send me to the doctor to check that he was okay - and he was - it was a cold. He improved but then he started to become very unsettled and everyone had an opinion about it. He's growing! He's teething! He's too young to teeth! No he's not! I thought it was just what babies do. We had a day when he slept alot but he was a baby, babies sleep alot, so I didn't worry. The next day he slept in but again I didn't worry, he'd had a really unsettled night and I was very grateful for my shower, time to tidy the house and get the washing done.

Late morning I happened to be in my bedroom, where Cameron was sleeping ,when he opened hs eyes, I leant over him to say good morning and he stared straight through me, it was a chilling moment. My very next thought was - that must be a really wet nappy, better get you changed before you leak. I scooped him up to take him to his room and he let out a blood curdling, pained cry. Clearly I had hurt him but I couldn't see how. I laid him on the change table and opened his nappy and then the panic set in, there was blood in his nappy. You never know how you will react in a situation until it happens and clearly my brain left the building. Instead of ringing the doctor I rang my husband, who logically told me to ring the doctor and he was coming straight home - don't worry.

You're probably wondering why we weren't heading for the emergency department, that would be because we didn't have one. We lived in a little mining town 4 hours north of Kalgoorlie in Western Australia. We had a medical post and we did actually have a doctor at the time. So off to the doctor we went and the GP checked Cameron over and contacted the hospital in Kalgoorlie for advice. The diagnosis was a bowel infection that was going around the goldfields, affecting young children. We were sent home to collect samples and told to keep his fluids up. Easier said than done.

We went back to the doctor at the end of the day with what samples we had managed to collecct and a child who really wasn't interested in feeding. While we sat there in the doctors office Cameron's body emptied itself in every way possible - all over me. Lovely. Again there were phone calls to the Kalgoorlie hospital and again the diagnosis was a bowel infection. Go home, keep the fluids up and come back in the morning.

That night was horrendous. Michael had work in the morning so he went to bed and I set up in the lounge room with cushions all over the floor and the TV for company. Cameron, cried and cried but it wasn't his usual cry it was different, chilling, and he kept arching his back as if trying to get away from me. I didn't know what to do.

Clearly Cameron was no better in the morning so we were at the doctors when the doors opened and again phone calls to Kalgoorlie hospital. Cameron didn't want to feed so the concern now was dehydration, we had to go to hospital but the hospital was 4 hours away by car. We could fly by Royal Flyiing Doctor but we were not a top priority so we would have to wait until the afternoon to be collected. We decided it would be quicker to drive. We drove up and down all the time to shop, visit family and friends, see doctors, etc.

We went home packed a small bag for each of us, asked the neighbours to feed the cats and popped the german shepherd in the car with us. Within half an hour we were on the road. Half an hour out of town we pulled over on the side of the road, in the bush, to give Cameron a dose of panadol. As I sat on the back seat with him in my arms his eyes rolled back, his body went limp and then he started to jerk. I sat there staring at Michael saying - 'What is he doing?'

Welcome to My World

For a while now I have wanted to have a blog. I love to write and I find it very therapeutic but fifteen and a half years ago when my life turned upside down I lost my confidence and my energy to write like I wanted to.

The time has finally arrived and here I am ready to write and and share with the world what it is like to live with a child who has special needs.What it is like to have a child who was born perfectly normal and then to sustain brain damage at the age of 5 1/2 months. What it is like to watch your child fight to live and fight to stay alive.

Being a parent of a special needs child can be very lonely, you want to stay in your old world, with your old friends and live the life that you had mapped out before you. All of a sudden you find yourself in this new world with strangers who are friendly but aren't necessarily your friends. You don't know what you are doing and you just wish you could wake up and it would all just go away.

As time passes you get used to your new world, you do make real friends and if you are lucky some of your old friends from your old life stay and support you. You make new plans and map a new life. You actually start to smile again and genuinely enjoy life again especially when you learn to see the positives and see the negatives as only challenges which need to be overcome.

What I have learnt is that everything comes in waves and today may be a good day while tomorrow may be difficult. This is true for everyone's lives not just my new life. I have learnt to ride the waves, embracing the good and hanging on during the bad.

Well, there you go, I survived my first blog and I enjoyed writing it. Hopefully there will be many more to come but until then ........ Stay wonderful and thanks for reading.