Monday, 30 May 2011

Why Cameron is No Ordinary Kid - Part 20

From here my story loses it's timeline again. I have certain events that I know exactly when they happened but we were living in a bubble of non reality. It was day in and day out craziness mixed with severe sleep deprivation. So my story will continue but I am confident that people are going to tell me that my timeline is wrong and then hopefully with their memories my memories will be bumped into place.


I got up the next morning and had a cold shower with hardly any water pressure. I couldn't believe that in a big hospital like this I couldn't have a hot shower, surely they needed hot water for the patients and staff. After a discussion with a nurse I learnt that I needed to be out of bed each morning and in the shower by 6am if I wanted a hot shower with water pressure. Once the wards woke up the water cooled and the pressure dropped.

Michael came in and got me breakfast from the cafeteria and the day began. We had a new ward to learn the routines of, different patients to observe and Cameron to watch as he slept. We had doctors coming and going and tests being run.

We were starting to get to know the nursing staff who were all really lovely. One nurse set me a challenge - ''You need to know your sons ID number frontwards and backwards. Practise because tomorrow I am going to test you. '' The next morning true to her word she asked me what Cameron's ID number was frontwards and backwards and I could tell her. I could still tell her if she walked in and asked me right now. She was right, I did need to know his ID number, I've had to tell staff that number so many times over the years and it's come in very handy when I've been sitting in the back of a racing ambulance and the ambulance officer has been able to tell the hospital Cameron's ID number so his records could be pulled quickly.

This same nurse was very friendly and chatted a lot with us. She found out that it was our Wedding Anniversary the next day so she set us another challenge. Actually it wasn't so much a challenge as an order - "You must go out for breakfast for your Wedding Anniversary. You need to celebrate and take a little time for yourselves. I promise Cameron will be alright. There is a little cafe down on the corner, all the staff go there." You couldn't really argue with her and she was so lovely. She made you feel safe and besides, every excuse I came up with she had an answer for.

Michael's parents were absolute angels and sacrificed a TV from their home for me. I am eternally grateful to them. That TV kept me sane. They brought it in but before I could plug it in it had to be taken away by the hospital electrician to be checked and approved. A day or so later it came back with it's approval sticker and I was once again connected with the outside world.

Nobody else on the ward had a TV. One Mum had a sewing machine and she sewed all day as her baby slept. I'm guessing she had spent a lot of time in hospital, she seemed very comfortable doing her own thing. Most of the mum's flipped through magazines, chatted to each other if they were in a shared room or stared into space, numbed by the whole experience. From time to time you would see a mum slumped in a chair asleep.

Some babies had nobody with them and some of those babies mother's would come in and visit and then leave again. I don't know how they did it, I couldn't have left and my heart broke for the babies who had no one but the nurses. The nurses paid particular attention to those babies and would sit and cuddle them as much as they could but it wasn't the same.

Before we knew it, another day had gone. My Mum had come in around lunch time and brought us lunch and Michael's Mum came in around dinner time and brought us dinner. We were so grateful for food from outside the hospital.

Then it was time for another hot, interrupted nights sleep. It was really hard to say goodnight to Michael. It felt like a limb was being ripped off as I watched him walk away, I just wanted him with me all the time. The positive for the evening was that the nurses said I could close the blinds in my half of the room so at least I didn't feel quite so exposed and the lights weren't quite as bright. I got about as much sleep as I got the night before while Cameron continued to sleep soundly.

Sunday, 29 May 2011

Push Bowl - Never Heard of It?

Yesterday saw the birth of a new game in our house 


It's very easy to play, you only need two things - two plastic bowls.

We happened to have two bowls sitting on the table because we'd eaten some yummy pods. (They are so addictive) My Little Angel and Cameron were playing with the bowls  and eventually they got turned over.

I'm not sure who pushed the first bowl, I was out of the room but when I returned Cameron, My Little Angel and my friend were busily playing PUSH BOWL with huge grins on their faces and a fair amount of oohhss, aahhss and giggles.

Push Bowls is very simple, Everyone sits in their seats at the kitchen table and you turn the plastic bowl upside down. Then you push the bowl to the next person around the table at the same time as the other bowl is being pushed to you. Intitally the game was being played by three but I joined in and made it four.

You're probably wondering why I am telling you about Push Bowl. Fair enough. It's quite simple, Cameron couldn't have done this last week. Push Bowl has rules and patterns and we even made it harder by reversing the order and Cameron didn't miss a beat, he kept up and joined in like everyone else. He even got cheeky and delayed his pushes to trick people. We increased the speed and he made it faster.

Someone eventually spun their bowl and then the game changed again - Twist Push Bowl. Surely Cameron couldn't do this, you have to twist you wrist and flick the bowl at the same time with one hand. He did it! Up to then he had been pushing with two hands.

Such a simple little fun game shows the changes happening in Cameron's brain at the moment. He understood turn taking, He understood the routine, even when it was changed. His fine motor skills were able to flick, push and spin. He tracked both bowls at the same time, he knew what he was doing and what was about to happen with hands ready to catch as he pushed the previous bowl. He enjoyed the social context and he had fun.

This game also shows how we as a family have learnt to appreciate the little things in life. This was just a little thing in the scheme of life, the universe and everything but we have learnt to appreciate the little things and be grateful for the little achievements.

Next time you have nothing to do and two empty plastic bowls give Push Bowl a try and revisit your inner child - it was fun!

The Best Fun You Can Have On Four Legs

Every Saturday morning Cameron gets dressed just a little bit quicker because he knows he is going to one of his favourite activities for the week - Riding for the Disabled.

Cameron has been horseriding with Riding for the Disabled since he was two and a half years and old and thirteen years later he still loves it with a passion. He doesn't need to tell me, we can see the smile a mile away.

When Cameron started with RDA he could not walk. I carried him, or pushed him in his pram. He had a K Walker which is a walking frame on wheels which goes behind the body with bars on the side to balance you. Cameron was very slow with his K Walker and he could not change direction. If he walked into a solid object he stood there waiting for you to turn him around or he'd drop to the ground and crawl away. He had taken the occasional independent step, in therapy and at home, lurching from one adult to another but he was definitely not walking.

We discovered RDA from an unobtrusive A4 flyer on the wall at the hydrotherapy pool. I'd tried a mainstream playgroup and that had been a disaster so I had Wednesday mornings free. I thought, why not, lets see what this is about. That single thought changed our lives.

Six months after Cameron starting horseriding he walked independently. It was incredible and he has improved ever since. Just this week I noticed that he is running better and isn't leaning forward as if he is about to a nose dive into the dirt.

When you ride a horse the movement of the horse causes your body to use the same muscles it would if it was walking and consequently those muscles strengthen. When Cameron started RDA he had no real tone in his stomach muscles. He had been receiving physiotherapy at least twice a week since he had woken up in the Infants Ward and he had been swimming twice a week as well. His muscles had improved but they clearly needed something more and RDA was it.

Horseriding with RDA is miraculous for so many reasons. Obviously there are the physical benefits of strengthening muscles but there are so many other benefits. For a person in a wheelchair they are suddenly up high looking down upon their world  and experiencing a form of walking. For a lot of people with intellectual disabilities, like Cameron, they can not play team sports but they can ride a horse. Someone is there to watch over them and guide them all the time, they don't have to remember rules or game plans. There are also the emotional benefits they experience along with confidence building and self esteem. Everyone can ride, no matter what the condition, disability or problem there is always a solution.

Research has shown that horseriding can improve fine motor skills. A study showed that an intensive session on a horse can improve a child's hand writing immediately. It's seems implausible but we've seen it.

Over the years I have seem Autistic children calm down, overcome their sensory issues and fall in love with their horse. I've seen children with Cerebral Palsy improve beyond their parents wildest dreams. I've seen a hit and run victim who was in a wheelchair and needed total assistance walk unaided to his horse for the first time. I've watched children form deep bonds with their horses, coaches and volunteers and I've seen riders make life long friendships with other riders. As a by product parents also become friends and find powerful support from other parents.

There are social benefits too. Cameron gets to socialize with lots of different people in an environment which is supportive and makes allowances for him. This doesn't mean he can misbehave but people understand his disability and allow him to be him. He is with other people with special needs, their families and all the volunteers. Everybody knows everybody and there is a sense of fun, acceptance and excitement. It is a supportive community with a common purpose.

For us we have watched as Cameron's body has strengthened and taken control of itself. Cameron has learnt to say a few volunteers names from time to time and he learnt to sign horseriding at one point. Unfortunately his seizures robbed him of these achievements but he did them. He has learnt to mount a horse - a very difficult task when every week, for years, your brain tells you to use the wrong leg.

Cameron moves through life quite slowly but every Saturday Cameron jumps out of the car and walks quickly into the centre. He walks up the steps and up a graduated ramp which is high off the ground, two more skills which used to be incredibly challenging for him. He mounts his horse and rides off smiling, incredibly relaxed and happy because - he loves RDA.

Horseriding for the Disabled truly is the best fun you can on four legs and our family are deeply grateful for this incredible organization.

To learn more about Riding for the Disabled in Australia
(This is an International Organization)
Please click on the links below

State Organization - Riding for the Disabled WA                     
Facebook - RDAWA          

Friday, 27 May 2011

What is Kinesiology?

Approximately every six weeks Cameron visits his Kinesiologist. He's been seeing her for five years and he loves his sessions.

Cameron is always eager to get in the car for Kinesiology and we enjoy our outing together. The drive up into the hills is really nice, the view is amazing and I always leave feeling relaxed and positive.

When we went to our first Kinesiology session with Cameron we had no idea what we were walking into and when we walked out My Marvellous Man and I got into the car, sat there in silence for a moment and then both shared our thoughts.

"Well, what do you think?"
"I don't know how to explain what just happened."
"I was waiting for the eagle feathers to come out and the chanting to start:"
"Do you think we should bring him back?"
"Yes, you?"
"Yes, why?"
"Did you see how well Cameron walked to the car?"
"We're coming back."

We were both stunned and struggled to explain to our family and friends what we had experienced. Cameron had wobbled and struggled to walk slowly on the gravel into the session and when we finished he walked confidently, independently and quickly back to the car. I was so glad My Marvellous Man had gone with me because I would never have been able to explain it to him.

We had an appointment last week and I asked for a description of what Kinesiology is so I could share it with you because it's hard to explain. Thank you Jill Melville for the following description.


Kinesiology is the study of movement and motion. It is a natural health programme using touch, acupressure and massage to improve postural balance and reduce physical and mental pain and tensions. It is a whole person approach to health combining ancient oriental principles and recent western developments with emphasis on nutrition, exercise, postural and muscle balance. These techniques are helpful in correcting back and neck problems, allergies. dyslexia, co-ordination, learning difficulties, emotional stress, structural problems, sporting injuries and nutritional imbalance. 

Kinesiolgy works directly with the nervous system and the body's innate intelligence. Practitioners use muscle monitoring to identify whether there is a reduction in neural signals flowing through the nervous system to specific areas of the body, which is often indicated by stress, illness or degeneration. Kinesiology is a method of restoring the natural energies of the body using simple methods of Therapeutic touch. With learning difficulties Kinesiology can help stimulate the brain and nervous system to enhance brain integration, improve co-ordination and reduce stress.

Kinesiology is a neurological biofeedback system. It evaluates nutritional imbalances, musculature related to postural movement, acupressure reflexes, emotional status and body system reflexes. This is associated with the structural, chemical and mental balance of the body. The Kinesiology system takes into account the total health picture and is focused on prevention and health enhancement. It educates and motivates the client as the therapy progresses.


Kinesiologists practice manual muscle monitoring because muscle testing detects weak muscles and each weak muscle is connected to a weak organ.

Each Kinesiologist is different according to what other areas they have studied. Our Kinesiologist has studied Aromatherapy, Reflexology, Magnetic Therapy and Bowen as well as a lot of other fields which fall under the Kinesiology umbrella such as Touch for Health and Applied Physiology. She balances Cameron's body.

My Little Angel used to be given a five minute balance when she was little and came with us. She would get extremely upset if she missed out. She clearly loved the feeling. I had a two minute glimpse just recently when the Kinesiologist gave me a quick balance. My eyes felt more open and clearer. My head was lighter, I felt light and happy. It was an amazing feeling and that was only after two minutes so I imagine an hour or more must be incredible.

Cameron's session starts on a couch and his muscles are tested with a rhythmic tapping. There are charts and books that she consults to work out specifically what he needs or what issues he is dealing with. She uses flower essences, tuning forks, an apparatus that places pressure on his acupressure points and massage, amongst other things.  After a seizure she will work to help his body recover and return to good health. It is a very physical but gentle therapy, all over the body.

Cameron used to fidget and be very difficult to keep on the couch but this last visit for the first time he stayed on the couch for the full session which was an hour and a half. His Kinesiologist usually has to follow him around the room to finish his treatment. When he was younger he was very difficult to keep still.

Our Kinesiologist often tells me how Cameron is feeling emotionally and sometimes gives me insights into why Cameron is behaving in certain ways. I know that sounds a little 'out there' but without giving her any background information she once told me that Cameron was feeling despondent and had given up on his future. We could understand his attitude, his seizures had taken so many of his new abilities and it felt like we were all going around and around in circles. She did what she could for him and then we followed up at home. We talked to him about how far he had come and how proud of him we were. We talked about his future and what we could see for him. We watched him regain his positive attitude.

At other times she has told me how he feels about people in his life, school and activities he does. She will tell me which parts of his brain are turned on and working and which areas are not. I usually spend most of our sessions with my mouth dropped open in awe of what she is saying.

As I said earlier, describing what Kinesiology is and what it does is really difficult. I know that it works for Cameron and that he benefits physically and emotionally. We believe it helps him achieve new skills and live a happier, healthier life.

Thursday, 26 May 2011

Why Cameron is No Ordinary Kid - Part 19

I felt very exposed climbing in to bed that night. I wasn't used to wearing my pyjamas in public.

Everywhere I looked there were eyes looking back. To be honest, I don't think anybody really cared what I was doing. There is so little to occupy you while you sit next to your sick child that you watch every little thing that happens around you. There was no TV, radio or phone and unless you had a book or magazine there was nothing to do but observe the world around you.

Cameron was asleep and doing all he could. Michael was in bed so there was nothing left for me to do, it was time for bed. I thought I would get a good nights sleep. I was only a metre away from Cameron so I could sleep soundly knowing he was right there next to me.

I climbed into bed and immediately noted the crunchiness of the bed and the flatness of the pillow. I found something to build up the pillow but there was no way to stop the mattress protector from crunching. Then I noticed how hot I was feeling. The bed couldn't breathe with the plastic mattress protector. It was so hot. I wanted to kick the sheets off but I was on full display to the ward what if my nightie rode up. I eventually worked out a way to twist the sheet around my body so my legs were out and cool but my modesty was maintained.

Finally I could settle down for my first good nights sleep in almost two weeks. Well ......................

Our room was next to the nurses station so Cameron was in constant view of the nursing staff. His condition was still serious. The nurses station has lights on all the time and it's where the nurses discuss their patients, write their notes, call doctors, take phone calls, eat and discuss their personal lives. The things I heard. I always knew what was going on in the ward. Who was organizing a day off, who had a bad day before coming to work and when patients were coming to and leaving the ward. I couldn't help but hear everything.

Then there are the observations which go 24 hours a day. Visits by a nurse for observations require lights, noise, disturbance and usually a conversation. Observations include - temperature, heart rate, blood pressure, oxygen saturation. At this stage Cameron's eyes were also checked for reactions. When we initially arrived on the ward Cameron had observations completed every hour. There were tests to be run, medications to administer and fluids to maintain as well as discussions with every new nurse because she wanted to introduce herself and hear our story.

There are machines which make noises to run and annoying alarms when they are finished or stopped. Kangaroo pumps are notorious for stopping and alarming to let you know they need to be reset. Sometimes the pumps just won't co-operate and just keep alarming.

You would think that when an alarm goes off a nurse comes immediately to turn it off and solve the problem. This isn't the reality. The nurses know which alarms require them to move quickly and which alarms need their attention as soon as they are free. Kangaroo pumps are one of the alarms which need attention as soon as a nurse is free so you can sit there with the alarm beeping for quite a while until a nurse is free and can sort out the problem. Everyone else's alarms are also loud and annoying.

My first good nights sleep in almost two weeks was lost in lights, noise, interruptions, heat and discomfort. I thought I had experienced sleep deprivation when Cameron was born but this was about to become much worse. I had no idea what was ahead of me.

A Passionate Kiss

We are a family who kiss and hug each other to show our affection and we kiss and hug our extended family and close friends. This is the environment Cameron has grown up in, watching us all and receiving kisses.

Cameron has learnt that kissing and hugging is a way to express his love and affection for someone he loves but for Cameron kissing has been quite a difficult skill to learn and perfect.

His first kisses were light and tentative because Cameron had to learn how to control his lips and head. As Cameron learnt to control his lips his kisses became stronger and sloppy. They could last for a very long time because he had trouble lifting his head away from yours. You usually had to wipe the saliva off your face afterwards.

Once Cameron had learnt how to kiss he then had to learn about appropriateness. He started to notice the world around him and how others kissed. I started to realize that his kisses were getting longer and stronger.

The day I realized he had probably been a little too observant was the day I got quite a shock. We were laying together watching TV and he turned around and kissed me. That was not a problem but it was how he kissed me that was troubling. The kiss was long and strong and passionate. I almost fell off the couch, I had that knot in my stomach telling me this was wrong - very wrong.

Poor Cameron didn't understand, he was just letting me know that he loved me and he was enjoying watching TV with me but it's not appropriate to passionately kiss your mother, it had to stop. I had to  push him away. He was clearly confused.

This may sound a little strange considering Cameron's abilities but there are times when I sit him down and explain things to him. Sometimes it works and sometimes it doesn't. I sat Cameron down and explained to him that he couldn't kiss me like Daddy kissed me or like girlfriends and boyfriends kiss each other. That was wrong.

Cameron only needed a couple more pushed away kisses and then he understood and he hasn't tried to passionately kiss me again. His kisses now say 'I love you' or 'thank you' and they are just strong enough and just long enough. In fact his kisses are just perfect.

Tuesday, 24 May 2011

Why Cameron is No Ordinary Kid - Part 18

We sat and watched rather excitedly as the nurses stripped the self contained room. Everything was packed up and the baby was moved into our room with it's mother's belongings. The room was cleaned and left sparkling. Our friend left and we sat waiting.

Finally a nurse came in and told us we were moving into Room One so we stood aside as staff moved Cameron and we followed behind with our bags. We stood and watched as Cameron was settled in to his room in his pink cot, yes you read that right - Pink. I was very conscious of the other mother's watching us, we were so exposed and on show.

Once the staff had done everything they needed to do for Cameron we were left to settle into our room. In Cameron's half of the room there was his cot and a small side cabinet next to the cot. There was a bench with two storage cupboards underneath, a small sink and an armchair. .

In my half of the room I had a bed with a plastic mattress protector. There was a small table, a chair, a small slim wardrobe and a small cupboard. On the fourth wall of the room I had a window to the outside world with a deep window sill and a door to a little ensuite with a shower, toilet and basin. Finally I could go to the toilet with out leaving the ward.

The room was surrounded by windows on three sides and the rules were that the blinds were to be kept open at all times. Staff needed to be able to look through to other patients.

Cameron was still hooked up to machines that monitored his body and fed him. He had tubes to collect his urine and tubes to deliver medications. He was puffy and he was asleep. We were excited he was breathing unaided and no longer in ICU but we didn't really know what was happening, he was sleeping, it didn't look like anything else was happening.

We were given a tour of the ward and shown the essentials such as where the linen was kept and where to make a cup of coffee. My mother left and Michael's parents arrived, this was their first visit since Cameron started breathing by himself. They needed to adjust to our new surroundings and circumstances.

Eventually it was just Michael, Cameron and myself. It was quiet and we didn't really know what to do with ourselves. We found the parent room and made ourselves a cup of coffee. We started to meet the staff, and tell our story over and over, We observed the other patients and watched with guilt as the mother who had been in our room returned to the ward.

Eventually Michael decided he was going to bed and he left the ward. It was so hard to let him go. I was all on my own and it felt so different to ICU. The staff visited routinely but I was on my own, I felt very alone and scared but I was about to get my first good nights sleep, so that was something to celebrate.

Sunday, 22 May 2011

Why Cameron is No Ordinary Kid - Part 17

Little did Mum and I expect, when those doors of the ICU were finally opened, we would see my friend from home standing there, bag of our belongings in her hand, waiting for us. Her timing couldn't have been better and after a confused but very happy hello she walked along beside us as we moved from the ICU down to the Infants ward.

My stomach was in knots because I just didn't know what to expect. We went down to the fifth floor and walked through the doors into the ward that was to become my home for the next 2 months. We walked past glass windows and looked at parents sitting in rooms with their babies. Everything was quite calm and quiet. We reached the nurses desk at the end of the ward and everywhere you looked there were glass windows with babies behind. We were directed into a room with four cots and taken to a cot in the corner where we were visible from the nurses desk.

Cameron was transferred from the bed into the cot and then after goodbyes the ICU staff went off to do a handover with the Infant Ward staff. We were left standing at the end of the cot not knowing what to do with ourselves. No chairs, no guidance and a petrified feeling in my stomach because all of a sudden there was no nurse standing at the end of the bed watching my son. It was a feeling of abandonment. What if something went wrong?

We put the bags on the ground at the end of the cot and stood there - my first question to my friend - Did you get my pill? Pill consumed it appeared that we were going to be standing there for a while so I ate my lunch and we started to catch up, feeling very odd.

After the handover was complete a nurse came in and found us some chairs and for the umpteenth time I told our story from the day Cameron got sick up until we walked into their ward. I was quite tired of telling our story to the medical staff over and over. You could be mistaken for thinking nobody talked to each other. After the paperwork was complete we were left to absorb our new surroundings.

Looking around I could see mother's sitting next to cots and I could see babies all by themselves. Nurses were going in and out of rooms usually picking up files and making notes as they went. There were a couple of babies in the cots in our room.

We sat there watching Cameron sleep for what seemed like hours. Occasionally a nurse would come in and take obs (observations) but on the whole we were left. There were two rooms on either side of our room. One had a cot and the other room had a cot, single bed and ensuite. The first room had a baby sleeping and a mother sitting watching, the other room was full of personal items and a sleeping baby but no parent. Eventually we were told that if that mother didn't return by a set time the baby would be moved and we would be moved into the self contained room.

I sat there hoping we would get that room whilst feeling guilty for wanting that room at the expense of the unknown mother. I wanted to be with Cameron, have a real bed and have my own bathroom. It would make life so much easier and it looked safe. If we didn't get that room then I would be staying in the four cot room and sleeping on a fold up bed that would be removed during the day. The four cot room felt cold and exposed.

Michael returned, from wherever it was that he went, and we continued to wait. Finally, we saw staff make a decision.

Eagles or Dockers?

You haven't been to an assembly until you have been to Cameron's school assemblies. I have never been to an assembly like them and I've sat through a few.

Let me set the scene. A large empty space in the middle of the school with eight classrooms and 4 bathrooms opening into it. This is the heart of the school - it's called the Blue Area. Before you ask, the floor is blue.

There is artwork hanging on the walls and chairs dotted about. At the front is a big TV screen and a computer set up beside it. On the other side of the TV is a table and above that is a big pin up board. The pin up board is for the Star of the Week. It is a very big deal to be Star of the Week.

Assembly is every Friday but there are some weeks that as a parent you stand there thinking - are we having assembly? - because nobody has moved a chair or stepped foot into the blue area and time is ticking. But of course this is not a mainstream school. The majority of the students arrive at school on buses and sometimes the buses are delayed. The students who are brought in by their parents are not always on time, stuff happens, and this is acceptable in our school. Everyone understands that it takes time and not every day is a good day for our students.

You know things are happening when the music starts. One teacher is the DJ and he sets up his music, turns on the disco lights and gets the disco started. All of a sudden you see movement as students appear out of their classrooms because they want to dance. Now, dance can be interpreted in so many ways and you need to interpret it rather loosely for this description. Some of the students like to spin around to the music, others start conga lines and collect staff as they wind through the school. Some partner up and sway or rock to the music, usually with a staff member. Some students just stand or sit and listen but they are enjoying the music, the lights and the atmosphere.

Cameron will stand and smile when the music starts, he loves music and loves to clap to music. He doesn't quite get the whole conga line concept but he gets roped in from time to time. He usually stands in the middle of all the action and socializes.

Whilst the disco is happening staff are bringing in chairs and pushing in wheelchairs, if the student isn't dancing. They are collecting aides for question time and comforters for the students who will find sitting through assembly difficult. The nurses start to find their students to medicate or feed and go about their duties as if unaware that they are in the middle of a disco. There is a buzz and everyone is smiling, students and staff. It's infectious, you cannot stand in that room and not feel happy.

Eventually the Principal will make a move and the music is stopped. The students move to their seats quickly and it's time to begin. Some week's assembly starts with The News on the TV. This is brilliant. A student is filmed introducing themselves and the date. Then we watch a montage of what has happened in the school that week, often with voice over's provided by the older, verbal students. Nobody is safe from the video camera in our school, I've been captured more than once and anything is news, be it a tree being cut down, a student returning to school after a long stay in hospital, a staff member getting married or students going for a community walk. Cameras are used all day long in our school.

This term, after the news, we are then having a class item. Today was Cameron's classes turn. I did feel sorry for his teacher because half the class called in sick. However the remaining three students all dressed up in very seventies inspired rock band outfits and showed the school how they could play instruments they had made in their classroom. Then they rocked out to a song with the shakers and elastic band guitar until everyone gave them a huge round of applause and they took a bow. Cameron forgot how to play his shaker, he decided clapping was more fun.

Then it is the big moment - Star of the Week. Every student is star of the week at least once every couple of years. When you are Star of the Week, your parents get homework. We fill out forms describing our child's life, likes, dislikes, family and friends, pets, favourite activities and foods, etc. You can get into it as little or as much as you like. We also provide photos for the pin up board.

When your child is Star of the Week most families will try to be at assembly if they can manage it and it is quite common to see brothers and sisters visit from other schools and grandparents and extended family as well. The Star of the Week has their moment of glory with their powerpoint presentation which they assisted with as much as they were able. The staff move the child to the computer and no matter how long it takes the Star of the Week moves the mouse and starts their powerpoint.

The powerpoints are always fantastic, put to music and filled with lots of photos and colourful graphics. Sometimes the staff get super creative. Cameron's last powerpoint was a Masterchef inspired creation with a cook off between Cameron and another student. You can not stand there and not beam from ear to ear whilst wiping away the tears of sheer joy.

The Star of the Week assists the Principal to hand our certificates, their job is to hand the recipient their certificate and shake their hand. This is a big challenge for some students - Cameron loves it and completes this task with an enormous smile as long as he doesn't decide to keep the certificate for himself or return it to the Principal.

Once certificates are completed, The Ten Pin Bowler of the week awarded or the Fisherman of the week awarded and Happy Birthday sung to those with birthdays - staff included. (They also receive certificates from time to time) it is time for question time.

Question time is when the school finds out about the Star of the Week, with the assistance of a family member. A microphone is taken around and the students ask the Star of the Week about themselves such as - Who is your bus driver? What is your favourite food? What number is your house? Do you have any pets? or Cameron's favourite - Do you go horse riding?

Now, you might be wondering how non verbal children can ask questions. Well, there are pre-recorded buttons that the teachers have prepared and the student pushes the button to hear the question - What is your favourite colour? Some students point to picture cards and the staff interpret their points into a sentence - Do you have any brothers or sisters? Some children, like Cameron, make a noise - Do you like McDonald's? But of course some students can talk and the one question which is asked at every assembly without fail is - Do you like Eagles or Dockers?

The room goes quiet and everyone awaits - the answer -  and a whoop of cheer goes up around the room mixed with disgruntled mumbling from the opposing teams supporters. Then the chosen teams anthem gets blasted for 30 seconds. It wouldn't be assembly without this question. Today it was Eagles and then it was Dockers - the Star of the Week were twins and they barracked for opposing teams - so today everyone got bragging rights and a Dockers poster was enthusiastically raced to the front by a student to be held aloft with pride.

Finally the footy tipping trophy is awarded to the winning room and then assembly is over for another week.

Throughout all of this the nurses continue to feed and medicate. Today a very distressed student arrived letting everyone know he wasn't happy to be at school and was quickly calmed and seated with his classmates. Some students were shown how to sit appropriately, act appropriately and stay calm. Photos were snapped for the school newsletter - The Star of the Week is always highlighted with a photo and a write up. And everyone had a jolly good time.

Thursday, 19 May 2011

Why Cameron is No Ordinary Kid - Part 16

The next morning was very strange. I don't recall getting any sleep and everything was changing. Nothing felt right it was like we were sitting on a knife edge 

Michael came in and he was finally able to comprehend what had happened the night before - he was awake. He sat and had his first cuddle with his son breathing unaided in his arms. Like me his arms started to ache and he had to put him down however I was shocked at how short a cuddle he had. Upon reflection this is when Michael started to pull away and I took over. Michael had reached his limit, he couldn't cope with anymore.

Everything was different, staff discussions were different and you felt like you were part of something bigger but you had no say or control.

Mid morning we were told we were moving down onto the infants ward. We met that announcement with mixed emotions. Elation because we were leaving ICU and that was a good thing and fear because we were moving into the unknown. We'd had discussions with staff during the week about where in the hospital we might go when we left ICU. One nurse had told us about the neurology ward and had warned us that it could be scary with children making strange noises. That had scared me so I was relieved when we were told it was the infants ward.

We were now told that we were losing our hospital accomodation and that we needed to clear out our room. Hospital accomodation is only for couples who live in the country and have a child in ICU. This was really scary, where was I going to sleep, I was not leaving Cameron, and Michael and I wanted to stay together. I was told that I may be given a room in the infants ward with a bed and ensuite but I would have to wait and see if there was one available. Otherwise it would be a fold up bed beside his cot. Michael would have to leave the hospital.

We must have looked quite upset because the accomodation clerk took pity on Michael and gave him a single bed room down in the bowels of the hospital. We were apart but at least we were both still in the hospital. We packed our bags and were ready to go.

My mother arrived and we filled her in on everything that had happened over night, she was so happy to see Cameron breathing and looking peaceful.

 At this point in the story Michael goes missing. I remember things visually and he is not there. I've just sat and talked to him about what happened that morning and he has no recollection of what happened next. We have a theory and I'm sure as the family talk the missing pieces of the puzzle might be returned to us.

Our theory is that Michael went to HBF, he thinks to register Cameron and I think that is bizarre because why wouldn't we have already have done that but there is a niggling feeling in the back of my head that there was paperwork somewhere that we realized we had to deal with.

We can't recall who's car my mother was driving. Was it our car which we now know my sister drove down and caught the train home. My father must have taken their car home so who's car was she driving? Where was our car? We think she must have had our car and Michael took our car to deal with whatever it was we hadn't done.

So, back to the story after the short interlude in my confused brain.

It takes a long time to get paperwork organized and everything sorted for a ward transfer. It was now past lunchtime so my mother went and bought me some lunch because it seemed we would be waiting a while longer before we left ICU.

Of course, as soon as Mum returned with my lunch the staff decided it was time to move, so the lunch got packed along with everything else. I had my one little bag of belongings and all the flowers, teddies, cards and Easter gifts that we had been lavished with. All loaded up we moved towards the door with Cameron on his bed with cords and machines and staff to transfer us. Suddenly something was wrong and paperwork was retrieved to make adjustments. We stood in the corridor in front of the ICU doors waiting to see what was on the other side.

Wednesday, 18 May 2011

Why Cameron is No Ordinary Kid - Part 15

We'd only left home with enough clothes and personal supplies for a few days and we had now been gone for over a week. It was also school holidays and our friends from home were coming down to Perth. We got a phone call to ask what we would like them to bring down for us. Where to start, there was so much we needed. We gave them a list of clothes and other items. My biggest worry was my contraceptive pill - not that getting pregnant was a worry but I was about to run out. We were so grateful for our stuff.

We were now up to day nine, the day our families started to phone our friends. It was a day like all the rest and I was sitting up doing the nightshift while Michael slept. Suddenly staff started to behave differently and discussions were happening out of my ear shot. Finally someone came in and explained that Cameron was trying to breathe by himself. I didn't really comprehend what they meant but I could see there were changes happening. I wasn't prepared for what happened next.

Everything moved so quickly that I didn't have time to wake up Michael. Staff came in and started removing tubes and watching to see if Cameron could breathe unaided. He was okay, he was breathing by himself..Then in the blink of an eye the decision was made to move him out of isolation. This was very unsettling.

We had become very settled in our room. It was now our home and we had arranged our flowers, cards and gifts in an attempt to make it personal. We had our places that we sat and we were comfortable. Within minutes our comfort zone was gone and we were moving out.

We only moved 10 metres away but it felt so exposed and uncomfortable and Michael didn't know. I raced down the corridor and burst into our room. It was difficult to wake Michael and make him understand. Cameron was breathing by himself, this was big, he had to wake up and come now!

I dragged my half asleep husband back to the ICU to see his son breathing by himself. I don't think he could completely understand what he was seeing. He was happy but he was half asleep. He stayed for a while and then went back to bed. I sat next to Cameron with an excited feeling in my stomach and then I was asked if wanted to hold him. It was the easiest cuddle wé'd had in 9 days. I just wanted to sit there and cuddle him forever.

I don't know how long I sat cuddling Cameron but it was until my arms ached and I convinced myself that I had to put him down. I didn't want to but I had to. I sat there and watched the sun come up on a new day and what I felt was a new beginning.

Parking Nightmares

When Cameron was in ICU, fifteen years ago, one of the families biggest stresses was parking. Finding a parking space and then paying for parking was a daily issue. As the day wore on they would suddenly realize that their parking was about to, or had, expired and they would have to sprint through the hospital, and down the road, hoping they hadn't been fined.

One day a social worker visited us to give us some vouchers to the hospital cafe, so we could get meals. She felt this was important and would relieve a certain level of stress but we stood there looking at her and said - thank you but the real stress is the parking. This appeared to be a little surprising to her.

After some discussion about the problem she disappeared and returned with parking vouchers for each of the family members so there would be no more mad dashes to avoid parking fines. Mind you, they still had to find a parking bay and each of them had their way of getting around the problem, whether it was the time they arrived or the where they tried for a parking bay first.

That was my introduction to parking at the children's hospital and fifteen years later it is still a nightmare to find a parking bay and return before your time is up. The problem is very simple, there are two small carparks and hundreds of people needing to park. Plus the traffic is one way so if you miss something you have to go around the block in heavy city traffic.

We have spent the last fifteen years visiting the hospital for all kinds of appointments - ENT, Audiology, Paediatrician, Epileptologist, Speech Therapy, Physiotherapy, Occupational Therapy, Hydrotherapy, Pathology, MRI, Cat Scan, Radiology, Pharmacy, Medical Aides, Early Intervention, etc, etc, etc. Every appointment means finding a parking bay and on occasion, two or three times in the same day.

This is generally what happens. You leave home an hour before your appointment, even though the drive is only twenty minutes, if the traffic is good. You arrive at the first car park in plenty of time, and with a positive mind set, only to find a queue of cars parked down the length of the carpark and spilling out on to the road. You drive around all the cars and flow back into the traffic and on to the second car park. This time as you approach you see cars cruising around and some parked in the aisles waiting. You pull in hoping that someone will be sitting in a car, undetected by the other drivers, and pull out in front of you. You cruise around the carpark manoeuvring around the parked cars and pull back out on to the road.

As you head off to drive around several blocks to get back to the first carpark you notice that all the street parking is full. So you start all over again. You still have a positive attitude and you're asking the universe for some help PLEASE - time is running out. Again two carparks later you haven't found anything so around you go again. This time, with the swimming pool pass winking to you from the dashboard, you pull into the swimming pool carpark in the vain hope there is an empty bay - no luck. So out you go into the traffic again and back around to try the carparks again.

Now you are starting to panic. The appointment is in ten minutes and your feeling slightly stressed. The first carpark is still full so back to the second carpark you go and this time you park to wait for a bay. There is no point in driving around and around, you may as well wait. I have waited half an hour - but I got a parking bay.

Then you have to jump out of the car grabbing the child and everything else you need, race under the road, you've just driven across too many times, and tear into the hospital in a mad rush, blurting apologies for being so late. This last part is not so fast when you have a child who is too heavy to carry and too old for a pram so you have to walk - slowly.

When we went to hydrotherapy (water therapy) at the hospital we were given a pass to park in a tiny carpark next to the pool. That was wonderful if there was a bay available and if nobody else took the bays because their frustration levels had over taken their sense of right and wrong. Many a time I would pull in to find no empty bays and then have to negotiate my way back out whilst other cars were coming in behind me. Then it was back into the traffic and around to try and find a bay in the other carparks.

Cameron went to the hospital Day Care Centre for a few years and parking to get to the Day Care Centre was even crazier. There are only two bays for the whole Day Care Centre, so you can imagine what happens at the beginning and end of the day. Plus, if there is a news story and the media have turned up, they will take those bays. You have to cross six lanes of traffic to get across the road to the main carpark from the Day Care Centre carpark. Of course when the traffic is heavy you can't cross six lanes of traffic so you have to merge out and take the scenic route around the suburb until you can get back.

Over the years I have left home earlier and earlier to leave myself plenty of time to park. It is however ironic when you pull straight into a parking bay and then have to try and entertain Cameron for half an hour to an hour before his appointment.

There are ways of avoiding the carparking hassles and there are times when parking is absolutely no problem. If you want to avoid the carpark, arrive in an ambulance. We have tested this theory on many occasions and there is always a bay waiting for us right next to the door and we are inside in no time. But if you must take your own car then night time is the best time to find an empty parking bay. I am always the parent in the ambulance and Michael follows behind in the car. Between the hours of 6pm and 8am Michael has always found a bay waiting for him. It's just not there waiting for him when he arrives later in the day.

I always find the carparks quite sad to look down on at night. There are always cars in both carparks and you know that they belong to parents sitting in emergency or scattered through the hospital sitting by their children. The cars look lonely and abandoned which often reflects how I feel inside the hospital as the night wears on.

Monday, 16 May 2011

1,2,3, Let Go

Cameron likes to shake hands. This is a relatively new skill for Cameron. He learnt it last year and now he shakes hands whenever and where ever he can.

There's only one problem - he doesn't know when to let go. He will hang onto the persons hand until you pry him off. Pulling doesn't work and a firm grip doesn't work, sometimes you have to get very physical with him to let the poor person go. The handshake recipient usually smiles and says - it's fine - but it's not fine. Cameron needs to learn what is appropriate and what is not.

Handshakes are not the only uncomfortable social situation Cameron gets us into he also likes to touch watches, name tags and necklaces. Now, picture this - he meets a woman he doesn't know and he immediately reaches out to touch her name tag. Think about this. What part of the female anatomy are most name tags sitting on? That's right - the bust. Embarassing for all concerned, except Cameron.

Necklaces, also  sit just above the bust and many times I have had to make a mad dash for a strangers cleavage to stop Cameron's hand getting there first.

Cameron has huge difficulty understanding appropriate social interactions. If he loves you he wants to hug you and kiss you and sit very close to you. Sometimes that means sitting on you. He touches the people he likes but he will also touch total strangers. Most people are very kind and brush it off but I have been in shops when people have swung around ready for a fight and I have had to talk fast and apologize even faster.

Cameron doesn't get embarassed, well that's not true, we have seen him blush on a few occassions over a pretty girl but he certainly doesn't get embarassed about social interactions. He thinks the whole world should like him and as a general rule most people do fall under Cameron's spell but he has to learn to act appropriately and that includes letting go when he shakes someone's hand.
Cameron - 1 shake, 2 shakes, 3 shakes and let go!


There is nothing in the world like one of Cameron's hugs. If you've had one I'm fairly confident you are nodding your head right now.

When you live in a non verbal world you have to find ways to express yourself and Cameron uses hugs in many different situations to let you know how he is feeling.

Cameron will hug you when he is happy and he will hug you when he is scared. He hugs you when he is sorry, to say thank you and because he can't think of anything else to do.

Sometimes his hugs are not exactly well timed such as when I am dashing to the toilet - it's urgent - and all of a sudden Cameron's arms grab me and his body sinks into mine. Or when I am in a mad rush to get out the door and Cameron suddenly appears in front of me and envelopes my body in his melting hug. You have no choice - you will be hugged. He even tries to hug me while I am driving.

Cameron hugs strangers and he hugs the people he loves. He tries to hug everyone which can cause some problems. Some people don't like surprise hugs. Some people don't appreciate being hugged by a stranger, especially a big teenage toddler.

School is another challenge. In Cameron's world the staff at school are in his close, safe, trusted world but in order to teach the students that there are social boundaries which must be observed the staff don't allow the children to hug them. That's really hard for someone who expresses himself through hugs and physical contact. He often moves in for a hug only to be met with a swift, stiff arm pushing him back.

The other time that Cameron will hug you is when you are upset. If you are crying he will quietly move in and smother you in a giant bear hug that makes you relax and feel incredibly loved. There is nothing in the world like it.

Lately I have been getting a lot of hugs on the way home from school and at the shops. At the shops they are big, excited hugs because we had a treat or because I've let him look at something he wanted to see. Sometimes he just swings around and hugs me for no apparent reason but I'm sure he knows why. It can be a little embarrassing standing in the middle of the shopping centre with a teenager wrapped around me but I have learnt to push my embarrassment aside - just imagine if I'd never got the chance to experience these hugs or if I never felt them again.

On the way home from school he just suddenly stops, swings around and envelopes me. We are not going anywhere until he is ready. Slightly embarrassing with all the teenagers from the high school walking past but avoiding eye contact is the key. You can try and push away when you feel the hug has gone long enough but until Cameron is finished we are not going anywhere.

Cameron can be quite cheeky sometimes and lately he has been quite mischievous with his hugs. We have a family member who he is refusing to hug, or even look at until five minutes before our family gathering is over and then she gets a huge hug accompanied with a giant sized grin.

A young, adult, female friend of the family who Cameron reeaaalllyy likes usually gets a hug as soon as he sees her but the last time we met he walked straight past her and greeted a total stranger. Not nice Cam. After a while he went and found her and gave her a hug. He has started holding his hugees to ransom.

I let Cameron hug people we know, and then I'll try and pry him off them. Sometimes easier said than done. However for people we don't know I usually fling myself in front of them as Cameron moves in for a hug. Sometimes I'm too slow and sometimes it gets embarrassing but on the whole everyone is very understanding and kind. That's once they've caught their breathe and got over the shock of receiving on of Cameron's BIG HUGS.

Sunday, 15 May 2011

Honey, We Need to Have a Little Chat

My Little Angel is a little sister and a sibling but intellectually she is the big sister and at times she is an only child. It can get a little confusing for the adults so imagine what it must be like for her?

This morning I happened to be walking past My Little Angel and as she was pretending to turn on and off a TV which was not plugged into a wall. She was pushing the button on and off rapidly. Totally harmless is what most people would think but ......... Cameron was sitting a metre away. I leant over and said - "Stop, Cameron is watching you." She was not impressed but stopped.

A little while later we were together again and I pulled her up on to my knee and had the talk that I have been kind of having with her for a long time now but this time it was different. This time it was a grown up, very serious conversation, spelling out exactly how it is. She is old enough now to understand.

This is what I said ....

Honey, I know you are Cameron's little sister and he is your big brother but sometimes you are his big sister too.

She protested a little that she was his little sister and then we moved on. I think she feels very proud to be Cameron's little sister.

Inside Cameron's head he is like a little boy, like Bro (second cousin). Bro is almost two and he is a lot like Cameron, isn't he?  He watches people and then he does what they do. Do you remember at the picnic how he watched us all taking food from the table and then he went and took lots of food, even when he was told not too?

Good giggle - it had been funny.

Do you remember how Bro waited until we all started talking again and he thought we weren't watching him and then he snuck around the table and took some more food?

More giggling - because it really had been very cute and funny.

Well, Cameron is just like Bro inside his head, he doesn't understand when he should or shouldn't do things but you are bigger inside your head so you understand when you should or shouldn't do something.
This morning when you were pressing the button on the TV Cameron was watching you, He doesn't understand that the TV wasn't connected to the wall or that you can't do that to a plugged in TV. 

My Little Angel was listening and absorbing.

Mummy and Daddy have to remember to be careful as well, sometimes we forget. Do you remember the night that Daddy lit the BBQ and put the lighter down and then Cameron picked it up and lit it right in front of his face?

Big laugh from My Little Angel - horrifying  memory for her mother. Daddy sat next to us saying nothing.

Daddy didn't think about it when he put the lighter down because Cameron hadn't done that before. We all have to remember not to leave knives on the bench and I have to remember not to leave the honey on the bench - do you remember the honey?

Big giggle at my expense.

Cameron copies us and he doesn't understand when it isn't safe or sensible to do something so we have to be careful about what we do in front of him. 


I know it's hard.

Big hug.

A distraction occurred and the conversation was over but I know she will ponder our conversation, probably when she should be asleep and then she will want another chat. It might be tonight or it might be in a month's time but we will talk.

My Little Angel is totally accepting of her life and her family, despite how different life is in our home compared to her friends. This doesn't mean that she doesn't struggle sometimes with the realities, the traumas or the craziness but she gets through them like the rest of us and grows from her experiences.

She is an amazing little, big sister.

Thursday, 12 May 2011

Is that a No-Yes or a No-No?

If I had a dollar for everytime a person has looked at me with a puzzled expression and eyes asking - does he want it?  I would be well on my way to paying off the mortgage. And I have days of frustration when people don't include Cameron in something, or give him something, that everyone else has or he needs, because he said No.

We live in Cameron's world and in that world there are Cameronisms, yes, in his world I get to make up words. Cameronisms are the little things that only Cameron does and all the significant people in his life understand his Cameronisms but for everyone else it is really confusing.

It can be challenging to ask Cameron a question. For example - Cameron would you like a drink? He will shake his head No. Okay, the natural assumption is that he doesn't want a drink but we have learnt after many years of living in Cameron's world that you have to question the answer. His No could be a No or it could be a Yes. Confused? I know, it gets like that around here.

There is an invisible switch inside Cameron's head that answers most questions with No. I don't know why but it does. You could ask him if he wants a lolly and he will answer - No. ?????? He loves lollies. You could ask him if he'd like to watch TV and he will answer - No. Again, ?????? He will sneak in and turn the TV on whenever he thinks I'm not watching, rarely does he not want to watch TV.

We have learnt to question any No with, now is that a No-No or a No-Yes. If you're lucky the switch flips and you get a Yes, if ýou're unlucky he will still say No whilst giving all the body language signs for Yes. It can get frustrating but we have learnt to challenge his switch and if he says No a second time then we walk away, if he really wants whatever it is you are offering the switch will flip and he will grab you, the item he wants or he will scream really loudly to let you know he is dissatisfied with your behaviour because clearly his No was a Yes.

However there are certain questions that hardly ever get a No of any kind. Cameron, would you like to watch a Wiggles DVD? To that question you get a quick and happy head shake Yes and then you have to keep up with him as he races to chose a DVD or turn on the TV. Cameron, would you like to come with me in the car?  Watch out, Cameron coming through, he will even go and get his shoes without being asked. The trouble is when you get home and he thinks he hasn't had a long enough drive - he will refuse to get out of the car.

So, if you  meet Cameron and he answers Yes to a question you can be assured that he means Yes but if he answers No, well, it could mean No or it could mean Yes. You have to use some common sense and guess. His yell will usually let you know if you got it wrong and it's really important to him. Or, look at his sad puppy dog eyes as you walk away, you can usually figure it out by then.

Tuesday, 10 May 2011

Why Cameron is No Ordinary Kid - Part 14

There were other people also planning on us moving on and looking to the future away from our home,

I received a message to call a person I knew from home. She was an acquaintance but our town was very small so I didn't think it was too strange that she had called presuming she wanted to know how things were going. The conversation started out as I had expected with her asking how Cameron was and how we were coping and then asking what our plans were. Then she asked the most unexpected question.......

Can I take over your clients and business? Say what?????????????

I know I was in denial but remember what everyone else was thinking - Cameron is going to die. If Cameron had died we would have returned to our home and our jobs and created a new life for ourselves in the same town. We both had good jobs and  a lovely unit and good friends living a couple of minutes away. It would have been hard but we would have managed.

I was juggling a part time Kindergarten teaching position with party plan sales for two companies, one selling children's clothes and the other selling children's books and games. She wanted my clothing clients because she knew I had been doing really well and lots of people in town were in love with the clothes.

Now I can think of lots of things I should have said to her but instead, in total shock, I said - okay.

It never ceases to amaze me how insensitive people can be, we had only been gone a week.

Another phone call I remember was with a friend from home who I would visit and have long chats with. I had met her when I ran the towns Day Care Centre and she had her second child the year I had my first. She was someone I looked up to for advice and I really enjoyed our chats and time together.

She rang to see what was happening and when I explained how sick Cameron was and that he had severe brain damage she was lost for words. She went quiet and said to me - I don't know what to tell you. I'm sorry. We were now living in two totally different worlds and she no longer had advice for me. It was sad that I lost my mentor but I hope she never understands my world. I hasten to add, I didn't lose her friendship.

I had many interesting conversations over the next few months where people didn't know what to say or how to support us. Friendships dissolved, some slowly and some quickly. People couldn't relate to our new world. Some friendships grew stronger and still exist today.

Why Cameron is No Ordinary Kid - Part 13

At this point in our story life really does leave reality. I no longer remember what days anything happened but I have vivid memories of events and a general idea of a time line.

Whilst we were still in ICU and everything was a major drama my sister and my father had to return to their home towns because they had to go back to work. The thing you learn about family dramas - life doesn't stop for them, life goes on.

They both came in to see Cameron and say goodbye to everyone and then I had to stand at the door of the ICU and watch them walk away. It was a horrible sinking feeling. You want your family with you at times like these and I knew they wanted to stay. I now know that family members thought Cameron was going to die so it must have been so hard for them to walk away. They were heading home to deal with their trauma on their own without any of the family to support them. They both also had very long drives, in opposite directions - which would have given them a lot of time to ponder life and worry.

On reflection everybody needed support and understanding but Michael and I were incapable of supporting anyone except Cameron and ourselves, there was nothing left, the trauma was too great. The extended family had to support themselves. Luckily both of our families get on very well so that would have helped.

I have now learnt that by day nine our families had given up hope. They started to phone our friends and warn them that Cameron was possibly going to die. However they asked our friends to not visit because they felt we couldn't cope and they wanted it to be just the family. Michael and I have no memory of this, we didn't comtemplate Cameron dying. We were scared but it was a fear of the unknown we didn't lose focus on Cameron getting better. We were planning our life for when we got out of the hospital. We had to, we needed a future to focus on and move towards.

Why So Much Linen for One Person?

This is not all of Cameron's linen there is also a fully made up bed ....

With multiple layers of bedding ......

And protection ......

When a little person wets their bed it stinks and it's annoying that you need to change the linen and air out the mattress if you haven't put a protector on the bed. When Cameron wets the bed it is like you threw a bucket of water on the bed. It is really hard to find a protector that can contain it all so we have resorted to multiple layers in an effort to protect the mattress,

We also use different types of protectors in the vain hope that we will only have to wash the first one but then if it leaks around the edge or soaks through we hope the next one will catch it but if he moves and misses the edge of that one then hopefully the next one will catch it. And on it goes.

We use comforters because a doona adds more work. You don't want to wash a doona and doona cover and then have to get the doona back into the doona cover every day. There are doona protectors but that is still more washing so we figure we may as well use comforters.

As he grows the problem alters and we just have to find new and creative ways to contain the problem. No nappy can hold a teenage boys output and especially one who doesn't use the toilet or who tries but ...........

Then we will add the issue of blood noses, vomit, poo and seizures. Cameron has only started the blood nose problem over the last few years.. All of a sudden he started to have really bad blood noses and he likes to choose to do this during the night so when he wakes up in the morning it looks like a blood bath on his pillow and face. Half the time he doesn't even know it's happened.

Vomiting was something that ruled our lives for many,many years. He would wake up and vomit at all hours of the night. Sometimes it was from over consumption of food but I also believe it was seizure activity and thankfully since we found our wonderful Chiropractor this issue has disappeared.

Because Cameron's brain is still at a very young age, there are times when he feels the need to investigate and experiment. If anyone has ever walked into their baby or toddlers room and found them finger painting with their own poo then I'm sure you will understand my horror when Cameron does the same thing.

Finally you have seizures and with a seizure you can add into the mix frothing of the mouth. Thick goopy mucus that usually ends up on the pillow and floor. It always cracks me up when an ambulance officer discreetly asks if Cameron has wet himself during his seizure - umm, like we'd know!?!

Actually there is one more bodily fluid that invades Cameron's bed linen and I really don't think I need to say much more except to point out to you that he is a teenage boy and sexually he is age appropriate. He just doesn't get the idea of putting it away which adds to the wetting problem. There is nothing more frustrating than finding a soaking wet bed and dry nappy.

Picture this, you've made up the bed and then you hear him vomiting so you go and strip the bed and remake it. Then during the night he gets up because he is cold because the bed is wet. So you get up and remake the bed again. In the morning you awake to a wet bed, of course, so you now have three complete sets of bed linen, pyjamas and mattress protectors to wash and dry. You can't fall behind because what if tonight is the same. We have been known to resort to layers of towels because we've run out of mattress protectors and we've scrambled around the house finding suitable blanketing and sheets - because we've run out. And a t-shirt and nappy is great night attire.

Cameron did have times when vomiting once was a good night and he has been known to get up more than once because he was uncomfortable with being wet. We've also gone in before going to bed ourselves to realize there is blood everywhere or you can smell that he is wet and you can't leave him like that.

Summer is great - no comforter goes anywhere near his bed. He also doesn't have a second pillow because he would decide to sleep with it and then we'd have two wet pillows. These days no soft toys are allowed in the bed or anything else not essential to the task of sleeping. It is just too hard to get everything clean again.

We are constantly on the lookout for age appropriate comforters for Cameron. We want him to enjoy his bedroom and find his bed a haven. We upgrade sheets because they wear out and because he is a young man and little toy cars is not what a fifteen year old young man would want on his bed. It's not his fault that he wets the bed every night so we try very hard not to make a huge issue out of it. We usually strip the bed while he is in the shower and let the bed air out during the day before making it up to look nice, feel fresh and enticing for him before bed. If guests are coming we will try and have his bed made and looking like everyone elses so he doesn't feel different and he can show off his room just like his sister does. That's what little kids do.

So that is why Cameron has so much linen. We haven't always coped so graciously with what Cameron has done to his bed. It has taken years of coming to terms with how life is and accepting it. There is no point in getting angry or cross, there is no point in yelling or screaming and there is no point in asking why me. The reality is that this is reality and if you calmly accept it life is a lot easier and you actually come to appreciate the days when the pile is like this ............

And celebrate the days when there is no pile at all.

Monday, 9 May 2011

The Things You Learn When You Write Your Own History

I've been writing my blog for two weeks and my recollections about Cameron and his fight with Pneumococcal Meningitis is growing bit by bit. Something I did not foresee is happening and has taken me by surprise. People are starting to talk about their memories of when Cameron got sick and I am learning things I didn't know.

When you live through a life changing experience it is all very much about you. You are coping with something you are not prepared for and you don't have the luxury of a clear mind to think things through calmly and to observe what is going on around you like you would normally. You're in shock and reality has left the building.

I've written about the trauma of phoning my parents to come down to Perth. I didn't know that Michael's Mum had been asked by the ICU staff to call  my Mum that morning. She couldn't do it because like me she knew she couldn't lie to my mother. I have my suspicions that my parents are going to add more to that story as well. Michael's sister remembers the staff asking her Mum to make that call.

Michael's Mum told me about her conversation with the staff and how she asked them if Cameron was going to die and they told her they didn't know. She asked how Cameron had ended up with Meningitis and again they said they didn't know. They warned everyone, apparently, to be very careful with anything they said because you can't take back words. Clearly they were sharing knowledge learned from other families. 

The other thing that has come to light is when some of our friends were told that Cameron was sick. It has to be remembered that this was before mobile phones and email. These days you would step aside for 30 seconds write a text and send it out to all your family and friends. Within a minute everyone would know what was happening. It wasn't that easy 15 years ago.

A friend told me a couple of days ago that they weren't contacted until day nine. They were shocked to find out Cameron was so sick and wanted to come to us immediately but was asked not to because it was family only. I was totally shocked. I had no memory of this. I would have wanted to see her. It is amazing how something so long ago can bring up such strong emotions. I felt guilty and incredibly sad because our friendship with our inner circle of friends is like a second family and it hurt to realize how painful that must have been for them.

I'm sure as I continue on this journey I am going to learn more and discover different points of view. My story will grow and change as memories are unlocked and other people fill in knowledge we did not know but this is a journey I want to take. Some of these memories may be painful but I think it will be worth it.

Sunday, 8 May 2011

My Marvellous Man is Home

It has been a really long couple of weeks in our house.  My Marvellous Man has been away for work. I am so glad he is home and things can settle back down to what we call normal.

We are a team and when one of us is missing it is so much harder for the other one to cope. The fear of a seizure happening whilst he has been gone has been horrible and I have missed the physical and emotional support. We discuss most things and plan strategies around how we will cope. We hold each other when it all goes wrong and laugh together when it dawns on us just how ridiculous our lives can get.

When one of us is down or weak the other is always up and strong and that is how it has always been. We will carry each other until life regains balance. I don't know how we would manage if we didn't.

Sometimes you just can't face another dirty pair of pants or you just don't have the energy for the teeth battle or your tact has left the building and you have no idea how to get the medicine in the mouth and down the throat - we tag team. Sometimes we will hear the other one become frustrated and we will move in and take over before things escalate.

Because I am, supposedly, a stay at home Mum I spend the majority of my time with the children and can become frazzled by the end of a particularly hard day. It usually only takes a few seconds inside the front door for My Marvellous Man to realize that I need rescuing. Actually, sometimes he can hear that I need rescuing from his car. He will sweep in and give me a hug, redirect the drama and send me off for a little time out or redirection. Sometimes all it takes is a fresh face.

My Marvellous Man is so marvellous that he pushes me out the door to take time for myself. He knows I need to get away and recharge my batteries. He is also our family chef and he keeps us well fed with very yummy food.

Some people don't approve of how we run our household but we are very much a united front who can deal with anything by embracing our individual abilities and always being there for each other. My Marvellous Man can do anything I can do, he cooks, cleans, washes and is even improving his hair plaiting skills. Nothing is his job or mine except that if you want to eat well it is probably better if Daddy cooks and My Little Angels hair will probably look better if I do it.

I am so lucky to have found my soul mate. He gives me the strength to move forward and embrace my life which is a little different to how I envisioned it 21 years ago when I said - I do.

I could go on and on but as my blog grows I am sure you will see why My Marvellous Man is so Marvellous and why I am so happy to have him home with us.

It's Time for Medicine

Twice every day there is one thing that must always happen in our home. The house can burn down, the dog can run away, the washing can pile up but Cameron must have his medicine, morning and night, without fail. It keeps him alive. Cameron takes anti seizure medication for his epilepsy.

The dramas associated with making sure Cameron has his medicine are unbelievable. Firstly, they taste horrible and as a baby Cameron's medicines came in liquid form. The smell turned my stomach, one in particular smelt really toxic.

When Cameron's meds were liquid we used to syringe them into his mouth. As his awareness grew and his taste buds came to life he decided he really didn't like this twice daily ritual. He would clamp his mouth shut and refuse to open. He would cry and cry. He would spit it out.

There was one fateful night that Michael and I will never forget. The fight to get Cameron to take his medicine was getting harder and harder and this particular night we ended up with Cameron on the lounge room floor and us forcing syringes into his mouth to get this life saving, foul smelling and no doubt foul tasting, liquid into his mouth. Cameron, Michael and I were all in tears. We couldn't do it anymore. There were so many syringes and medications, it was horrible. He's never taken just one medication.

We realized we had to get creative so we started mixing his medicines in with other food. We would have success with something for a while and then the hunt would be on again for another food disguise. We used custard, jam, ice cream, yoghurt, nutella, apple puree and anything else we could think of. Sometimes we would look at the meal in front of us and choose a food to mix the medicine into, such as cream or mashed potato. When we were in hospital we would always ask for pureed apple for his medicines.

This worked fine for a while and then the battle grounds were drawn again. Cameron was a good eater so we decided it was time to try tablets instead of liquid medications. Some people were horrified, he's too young, he'll choke, we had disagreements with hospital staff when we were hospitalized but sometimes parents know best and we knew our son.

We didn't leap straight to swallowing, we would crush the tablets and then mix them into the foods we had previously been using for the liquids. It worked a treat and peace was resumed. We had our routines every day for how we stored our meds, organized our meds, remembered our meds and consumed our meds.

By about 4yrs of age Cameron was swallowing his tablets and life was so much better as long as he opened his mouth. So then we had to find things for him to consume after the tablet to push them down and entice him to open his mouth. Sometimes it was a mouthful of his meal, sometimes it was whatever our eyes landed on in the pantry or fridge. We would find something that he really liked, such as yoghurt, and we would save that just for after his medicine, so it was a treat and he would open his mouth.

Finally he was able to take a drink with tablets in his mouth and that made life a lot easier. But Cameron always has another challenge up his sleeve for us. He learnt how to hold a mouth full of medicine, drink a full cup of liquid and still have the tablets sitting in his mouth. It is quite a skill. He will let them slowly disolve and then you have to make sure he doesn't spit them out while you're brush his teeth or make sure he doesn't let them ooze out the side of his mouth. I don't know how he does it, they must taste disgusting.

Everyday in our house you will hear the question, 'Have you given Cam his meds?' but that my friends is another blog entry all in itself.