Tuesday, 28 June 2011

Why Cameron is No Ordinary Kid - Part 27

Now that Cameron was free of monitors, machines and electricity, Cameron could have a bath. Cameron had loved baths and we hoped that he would relax and enjoy himself in the water  however it was not to be. The water seemed to annoy him and distress him. He would cry and just generally be sad, not exactly how it used to be.

Our room started to change. Cameron still slept a lot and when he did our room was peaceful but when Cameron wasn't sleeping he wasn't happy and he cried a lot. Our visitors didn't tend to see this because he was sleeping during the day and waking during the night. His body clock seemed to have completely reset itself back to front.

We had more doctors coming in to look at Cameron including a Neurologist who was a very impressive man, the type of man who demanded your attention when he was in the room and spoke very authoritatively.

One day he swept in with his entourage trailing behind him. I had visitors so the room became quite crowded. He looked at Cameron and then mumbled a whole lot of stuff that I didn't have a chance of understanding.

By this stage I was completely confused because Cameron seemed to have less abilities than when he was born and nobody was acknowledging my observation. I braved up and told this doctor that Cameron appeared to be like a new born but worse and he agreed but didn't give me an explanation. Instead he told me that we had five years.

"You have five years to reteach his brain and after that it will be too late."

I have never forgotten those words. I hung onto those words for five years. At the time five years seemed like a long time. I had a feeling of panic and urgency whilst having no idea what to do. However, he did give us a focus.

I had photos of Cameron taken the week before he got sick on my window above my bed. I wanted to hang onto my memories but I also wanted people to know what he was really like. This baby was not our baby, this was not normal, this was not Cameron. Apart from the usual baby things, like not letting me get a full nights sleep Cameron was a very placid and happy baby. He didn't even cry when he was hungry.

One day my mother told our doctor that she could see pain in Cameron's eyes and he told her she was wrong because the Meningitis was now gone. The infection might have been gone but the pain was there and that was clearly visible in Cameron's face.

I wish I knew then what I know now. Adults report excruciating headaches for about a year after surviving Meningitis and in hindsight Cameron must have been in a lot of pain, no wonder he didn't want to open his eyes in the daylight.

Why Cameron is No Ordinary Kid - Part 26

Life changed once Cameron opened his eyes. For starters I now kept the blind down during the day.

We were so excited that Cameron was waking up but he wasn't my baby. He was a limp, bloated, non responsive version of my baby. I started to grieve for my lost baby. I realized he was gone. I hadn't given up hope but my heart knew that my beautiful, smiley, charming baby was gone. I still loved Cameron but he was a different Cameron.

I had wanted to be a mother for so long and I had loved every moment of being a mother. There was nothing better in the world than sitting and hugging Cameron. I would rock him to sleep and ponder on the miracle of his birth and how lucky I was. I had been content and deliriously happy.

I grieved silently, I didn't cry openly. I always had it together. Occasionally late at night I would have a quiet sob into my pillow but it was short lived because at any moment a nurse could be in our room asking me questions.

Cameron spent more and more time awake but his eyes told us that he wasn't with us. His eyes were empty. I started to think he couldn't hear me or see me. Maybe that explained why he was staring through me and not responding to me. Every day when my mother visited she would assure me Cameron could hear me and see me but I was hard to convince until the day my mother saw Cameron react to my voice. That was the first time he had reacted to me in anyway since the morning before he slipped into the coma. That was now over three weeks ago.

As Cameron woke up he was able to be disconnected from some of his machines and monitors. He was left with his mainline and his feeding tube. He couldn't be disconnected from his feeding tube because he had lost his sucking reflex. I had reached the point of extreme exhaustion and despair but my mother was not going to be beaten. When Cameron had been born she had taught him to suck so she decided she would do it again. She got a dummy and for two hours she pushed that dummy in and out of Cameron's mouth until his brain remembered what to do. After two hours Cameron could suck again  and we were able to start introducing bottle feeds with tube feeds as a back up to ensure he was receiving enough sustenance. It didn't take too long before the feeding tube could go as well.

It was so wonderful to be able to cuddle our baby again. To be able to sit and cuddle him and feed him. A little bit of normality had returned.

Monday, 27 June 2011

Behind Closed Doors

You know the saying - you don't know what goes on behind closed doors. I really like that saying because it is so true. You can make assumptions, presumptions, and guess but you really never know.

I live such a different life to my friends with neurotypical children and consequently when I talk about my life it is sometimes hard for them to understand what I am talking about. They sympathize, empathize, celebrate and support but they can't possibly understand because it is not their life. Even the friends and family who are the closest do not understand what it is truly like to live in our family.

For fifteen years we have lived our lives, stayed strong and tried to stay positive. We have made sure that we haven't hidden ourselves away or separated ourselves from our family and friends who get to live in the mainstream world. At the same time I have made sure that I have made friends in the special needs world because it is so important to spend time with people who understand and don't need long explanations to understand.

In the mainstream world every child is different and comes with their own challenges. All parents share a common bond and it only takes a simple comment such as - Two year old temper tantrums or Teenagers - and immediately you can bond with a total stranger over your child's developmental stage.

Likewise in the special needs world. All our children have completely different diagnosis, labels, stories but we share a common bond and you can usually bond with a total stranger over - therapy, waiting for hospital appointments, toileting, sleeping, feeding, medicating , etc, etc, etc.

When you raise a child with special needs it is physically more draining. You get less sleep. Your sleep is less restful. You have to physically do more for your child and for longer in their life. For a lot of us we can't look forward to our child maturing and no longer being a physical burden, in fact for some the burden increases as their child becomes heavier.

Then there is the extreme exhaustion that comes from the non physical side of raising a child with special needs. The stress of worrying day and night about your child, where they are and what they are doing? Are they well, are they breathing, are they in contact with someone who is ill? Will they achieve their next milestone? What will become of them? What is their future? How can you do the best for them? The list goes on and on.

Quite often behind closed doors the stress of staying strong becomes too much. The emotion wells up and spills over. The exhaustion overwhelms. Sometimes it becomes too hard to cope and you want to hide. Sometimes the simplest things become impossible to deal with anymore. But this all occurs behind closed doors because you don't want to appear weak, you struggle to explain your behaviour and feelings and you need to stay positive in some way.

So it's important to remember that you can never judge a book by it's cover and even if it looks like someone is coping that doesn't mean that they are because like I said ........ you don't know what goes on behind closed doors.

Sunday, 26 June 2011

It's Special Saturday - You know you have a disabled child when .......

Welcome to Special Saturday. The purpose of Special Saturday is to draw attention to people living with special needs and the families supporting them. By raising awareness we will create a more accepting and supportive community.

This week we were given a sentence to complete - You know you have a disabled child when ..........

Every parent will have a different answer. Most of the answers I have read have had my head nodding because even though everyones story is different we all have a lot in common. People have come up with some great answers which can be found on twitter (search - #specialsaturday) and on the Special Saturday facebook page.

My answer was - You know you have a disabled child when your main topics of discussion are medications, nappies and lack of sleep.

Our lives are controlled by medication. We know that if Cameron doesn't take his medication a seizure will follow and we will end up in hospital fighting to save his life. We never leave home without his emergency medication and his daily medication just in case we are out at dinner time. Morning and night it's the same question - has Cam had his meds? Our family and friends often start this discussion because they don't want Cam to have a seizure.

Lately I have been talking a lot about nappies and related toileting issues. I don't think mothers of neurotypical fifteen year old boys discuss their sons nappies and toileting habits. I find myself discussing nappies, pads, wet beds, washing and the associated traumas on a daily basis.

When we have our babies we expect sleep deprivation and as bad as it is you expect your child to grow out of their disrupted nights. Therefore it is a bit of a surprise when twelve years later your son is still climbing into your bed in the middle of the night. Lucky for us Cameron stopped climbing into bed with us just before he started to drown his bed each night.

I found lack of sleep is one of the most common discussions amongst mother's of children with special needs. These days I am lucky. Cameron sleeps  but I tend to sleep lightly because one ear is always on the intercom in case he has a seizure. However true lack of sleep kicks in when we have to go to hospital. I hardly sleep whilst we are in hospital and then afterwards I am on edge all the time and can not relax into a peaceful sleep.

So, there is my answer. How would you have finished the sentence?

If you have a child with special needs you could join Special Saturday and help raise awareness and if you don't have a child with special needs you could still join in and help raise awareness. The fact you are reading this post tells me you care.

Saturday, 25 June 2011

Seizures, Seizures, Seizures

Cameron is Epileptic. Ever since that fateful seizure on the side of the road fifteen years ago we have lived with Cameron's epilepsy and over the years his seizures have changed.

While Cameron was sick with Meningitis his seizures were Generalized/Grand Mal/Tonic Clonic, whatever you want to call them - they involved his whole body jerking violently and required medication to stop them. It was scary to see our little babies body jerking violently and we felt extremely helpless because we couldn't help him.

When those large seizures settled down Cameron then had partial/petit mal/localized seizures. In other words, individual parts of his body would jerk. Some seizures were small and subtle such as a hand jerking, other seizures were impossible to miss. Quite often his hand would jerk up and down at the wrist with his hand clenched. Clenching was an indicator that he was going to start. His fingers would curl in and then the hand would start to jerk. You could try to uncurl the fingers but as soon as you let go they would snap back. Some seizures were extremely subtle from a visual perspective, you couldn't see any body part moving but Cameron wasn't with us.

I believe when Cameron was young he knew he was going to have some of his seizures. He would sometimes give me an accusing glare and then his eyes would roll back and he'd be gone. There was nothing I could do but watch it happen. I'd sit and comfort him, try and uncurl his fingers to send the signal to his brain that it needed to stop and I'd keep him safe.

When Cameron was young his seizures would last from a few minutes up to twenty minutes. Sometimes they wouldn't stop and we'd have to put him in the car and go to the emergency ward at the children's hospital. If we went to the hospital we always ended up being admitted so the doctors could find a medication mix that would stabilize him again.

Over the years Cameron has gone twelve hours between seizures and he has gone two years. At about fives years of age his seizures started to increase in severity again moving back to whole body seizures. He had seizures at school, in the pool, at home and in bed. Predominantly his seizures happened at night or early morning.

Over the past six years Cameron has had a major seizure every three to four months up until twelve months ago. These seizures always result in an ambulance dash to hospital, long hours spent in emergency while they save his life and then a three to four day stay in hospital while he comes back to us and stabilizes. He then spends one to two weeks at home recuperating and the family takes about a month to settle back down and return to what we call normal.

We associate certain noises with Cameron's seizures and we live on constant alert for those sounds. Any sound of banging, especially rhythmical banging sends us dashing through the house. A sucking, gurgling sound has me awake and dashing through the house in the middle of the night. But to be honest any noise which we hear and can not identify sends us investigating to make sure Cameron is alright because we've had too many close calls but that's another blog post.

In a couple of weeks it will be twelve months since Cameron's last seizure and we are delighted that he has gone so long between seizures. We are celebrating his good health and the achievements he has made because of the break his brain has had from constant disruption but even our friends are touching wood when we mention that it has been almost twelve months.

Wondering when Cameron's next seizure will happen is becoming increasingly stressful because it is like the ultimate game of SURPRISE! And what social event is he going to make us miss this time???????

Tuesday, 21 June 2011

Why Cameron is No Ordinary Kid - Part 25

Michael and I had settled into our new routine of him arriving in the morning with breakfast and leaving after dinner. Our days were pretty busy between doctors, nurses, testing, specialists and visitors.

We had lots of doctors coming and going from our room. We were a bit of a novelty so we had a steady stream of trainee doctors visiting which was fine, I realize doctors need to learn, however it became exhausting telling our story over and over again.

Every time a new face stood at our door I would have to tell our story from before Cameron became unwell through until this new person was standing in our room. I'd also be quizzed on Cameron's pregnancy and birth. I got sick of telling our story, I began to dream a dream that I still dream today ......... I truly wish Cameron's medical file had a cover page with our story described  briefly so I don't have to keep retelling it every time there is a shift change or new specialist or therapist.

We were becoming very comfortable with Cameron's paediatrician. He had been with us from the moment we had walked through the doors of the hospital and he had been instrumental in saving Cameron's life. He cared about all of us, not just Cameron. He could see the pain we were carrying and he could see the love we had for our beautiful son. He always asked how we were coping and got to know us personally. He was different to the other doctors.

We were very comfortable having discussions with Cameron's doctor so it didn't seem odd the day he asked us to sit down and have a chat with him. We left Cameron asleep as usual in his cot while a room full of visitors were sitting around the room chatting. We walked across the corridor to the Nurse Managers office and sat down with him.

I only remember one sentence of that conversation. It burned itself into my brain. Because of the type of man he was I know he would have been incredibly tactful and caring in his approach but this was the conversation he had not wanted to have with us, I can not imagine how horrible it must have been for him to prepare for what he had to say.

"I want you to know that I have seen patients worse than Cameron  improve and recover but I don't think this is going to happen."

I have never forgotten that sentence but I have also never forgotten what happened next. I didn't really have time to absorb what the doctor had said because within seconds there was a yell from our room. It was the type of yell that made nurses run and us jump out of our seats and dash back to our room. We all hit the room at the same time and then became confused, nobody was panicking.

Everyone was grinning and crying and they were excited. Cameron had opened his eyes.

I had been opening the blind each morning and pulling it down each night to maintain our daily routine. My Mum had been standing there contemplating Cameron's situation and felt the light might be too strong for Cameron so she pulled down the blind. As soon as the blind cut the light Cameron opened his eyes. The yell had been a group yell of excitement.

Cam Can Cut

This afternoon Cameron displayed a new skill I didn't know he had been developing. Cameron can cut!

I didn't  know Cameron could cut. The last time I saw him attempt to use a pair of scissors he was clumsy, not co-ordinated and ripped the paper after it became stuck in the scissors. We are always careful not to leave scissors lying around the house because it is dangerous to have Cameron walking around with a pair of scissors, someone is bound to get stabbed.

Yesterday was a very hectic and crazy day in our household and I have to be honest and admit that it was me who left a pair of scissors sitting on my dressing table in my bedroom. This afternoon after school I walked into my bedroom to find Cameron standing next to the dressing table with the scissors in his hands.

Something wasn't right. I glanced down and realized there were pieces of card scattered all over my dressing table.Then I realized that one of the Easter cards which had been sitting on my dressing table was missing. Actually it wasn't missing it was redesigned into many small differently shaped pieces. Card and envelope! Please don't ask me why I have Easter cards sitting on my dressing table in June. All I am saying is ..... it's been a strange year.

Cameron has learnt how to use scissors properly. I'm not sure when this happened but clearly he has progressed from jamming the paper to successfully snipping. Now we are going to have to be even more paranoid about hiding the scissors because nothing will be safe.

This story reminds me of the first year I was teaching. I was teaching Pre-Primary and on the first day I had a table set up with scissors and magazines so I could assess the children's scissors skills. The next morning I had a Mum come and tell me that her son had never touched scissors before his first day of school and he had obviously enjoyed his first experience a lot. He had gone home and cut up his bedspread, curtains and sheets.

I am now having visions of Cameron cutting up our house.

Sunday, 19 June 2011

Cameron loves going to ....... the Perth Dance Company

Yes, Cameron loves going to the Perth Dance Company but he doesn't go to dance he goes to socialize.

My Little Angel has been dancing with Perth Dance Company for five years and for the first few years we tried not to take Cameron. This was her thing, it was about her and the reality is, when Cameron is around things tend to become about him. He draws attention and people are drawn to him.

For the last couple of years it has been unavoidable, we had to take Cameron with us to dancing. I would sit next to him often holding onto him so he wouldn't touch other parents and dancers, or bags. He has a thing about women's handbags, he loves to touch them and put his hands into them.

If I needed to leave the room to do anything I had to either take Cameron with me or ask someone to supervise him because he wasn't fully settled and would usually get up and follow me or introduce himself to a stranger. People started to get used to seeing Cameron at dancing and started to get to know him.

This year it has all changed. Cameron has to come to dancing at least twice a week and sometimes three times a week. He loves going to dancing. I only have to tell him once that we are taking My Little Angel to dancing and he will get up and get ready immediately. Seems a bit funny that a teenage boy would want to sit in a group of women and watch primary school girls dance but he does.

Why? Because of the Mum's. To be honest, he pays absolutely no attention to the dancing apart from clapping or singing to the music. Cameron has made friends with lots of the mum's this year. Everyone is comfortable with him and he has matured and is more settled. He won't follow me if I have to leave the room. In fact he will happily watch me leave. I've now started asking him who he wants to sit with because he likes to choose where he sits and who he wants to sit next to. He quite often changes seats during the lesson to share his company around. He really isn't all that fussed about sitting with me anymore and this is the first time this has happened outside of family and close friends.

Cameron really enjoys hanging out with his ladies. He will often flip through magazines - most of the time upside down. Sometimes he just sits and listens to the conversations, laughing when he feels entertained. Cameron is becoming so comfortable that he will tap someone if he wants their attention or wants to let them know that he's happy to be with them.

If My Marvellous Man is able to collect Cameron on the way home from work I'm happy but Cameron is not. He will ignore My Marvellous Man and then become glued to the seat. He really doesn't want to leave his ladies and has one final trick up his sleeve before being dragged out the door. Cameron will suddenly have to give Giselle (the dancing teacher), whom he adores, a big hug or at least become attached to her in some way. Sometimes he will only leave if Giselle escorts him to the door.

I am so grateful that we found Perth Dance Company for My Little Angel. She is able to grow and enjoy her passion for dancing while Cameron has been able to also grow in an accepting environment. Everyone is so supportive of him and us.

The Perth Dance Company is a very inclusive dancing school that accepts all dancers and Cameron picks up on this very accepting atmosphere. They aim to get people moving, have fun and stay healthy. There are no overinflated egos here and that contributes to the open and accepting atmosphere which Cameron responds to.

To be absolutely honest, if My Little Angel decided to stop dancing Cameron and I would have major friendship withdrawal. What would Cameron do if he couldn't hang out with his ladies?

If you would like to know more about  the Perth Dance Company check out their facebook page - http://www.facebook.com/PerthDanceCompany

Please note: All content of this post is my own opinion and was not solicited or paid for by any  organization or business mentioned.

Friday, 17 June 2011

Welcome to Holland.....a Follow Up and the Amsterdam International

I was given 'Welcome to Holland' when Cameron was quite young and it was the first time that I read something that spoke to me. This person knew how I was feeling, I had found a person who understood me.

Years later the 'Follow Up' was circulated and once again I read my own feelings on the page. My life had progressed along with the writers and I felt comforted by the words, I was not on my own in this foreign land.  

Some people will read this post and sigh because they have read these words so many times and others will read this for the first time and will probably shed a tear or two. (So what's new around here?)  Most parents of children with special needs feel an affinity with these beautifully written words.

Welcome to Holland
Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely t
hings ... about Holland

copyright 1995-2003 all rights reserved tjf 20021125

And a Follow Up:

Follow up to Welcome to Holland by Cathy Anthony Parent Advocate

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.

I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger - the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad. I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me  in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned.

Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest.

And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its' tulips, windmills and Rembrandt.

I have come to love Holland and call it home.

Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

(Cathy Anthony is a parent, advocate and presently the executive director of the Family Support Institute in Vancouver, BC)

Thank you Emily and Cathy for putting into words so beautifully what a lot of us struggle to express and for the comfort you have given so many of us by helping us realize we are not alone in our thoughts. Holland isn't that bad now that we've taken a breathe and gotten over the shock of it all.


Addition to post on 15.9.2011

Now there is another instalment to the Holland saga - Amsterdam International. Written by Dana Nieder on her blog Uncommon Sense.

Dana talks about what it is like to land in Amsterdam's International Airport, in Holland, and realize you can not leave. This is a more in depth look at the emotions a parent goes through before reaching acceptance and settling in Holland.

Amsterdam International
Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.
(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this god damned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)
And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

(Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”)
Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010 All Rights Reserved  mailto:uncommonfeedback@gmail.com

Blog - Uncommon Sense = http://niederfamily.blogspot.com/2010/10/amsterdam-international.html

I'm sure when Emily Perl Kingsley wrote Welcome to Holland she had no idea the impact her words would make around the world.

Why Cameron is No Ordinary Kid - Part 24

Our routine continued. I'd be up at 6am so I could have my hot shower and then Michael would join me for breakfast. Nurses came in and out constantly to monitor Cameron, medicate him and feed him. Doctors always did ward rounds every morning and usually in the late afternoon as well.

My mother would arrive in the middle of the day and bring us some lunch and Michael's mother would arrive late afternoon and bring us dinner. One of them would take our washing away and bring us our clean clothes.

Messages would be given to us and if we were able we would call them back. Visitors would come and go and we would sit and watch Cameron.

Michael was sleeping in the parent room in the basement of the hospital. One night I went looking for him because I needed reassuring that everything was alright. I remember him holding me tight in his comforting arms and assuring me it would all be alright, we would get through this. He walked me back up to my room and checked in on Cameron. I remember sobbing quietly into my pillow after he left because I felt so alone. 

However before the week was out Michael told me he wanted to move in with his parents. He said he felt guilty about using a room at the hospital that we didn't really qualify for. I felt really confused when he told me because I wanted him with me. I didn't want to be on my own but I couldn't change his mind. He said we were sleeping in different rooms anyway so it made no difference but that wasn't the way I saw it. I liked having him there close by and only a walk away if I needed him.

Michael needed the comfort of his mother's care and familiar surroundings. He wasn't coping and I think getting out of the hospital allowed him to breathe and cope better. The lovely lady who had arranged the room for him was rather shocked that he was moving out and assured him that he could stay. I was devastated however like I said right back at the beginning of this story - You never know how you are going to cope in a stressful situation until you are in it.

I've talked to Michael about what he remembers about this part of our story and he has no memory. I think Michael's memory has buried itself because it is too painful to recall.

With Michael moving out of the hospital a new routine began which has stood the test of time. He would bring me breakfast each morning. McDonald's pancakes, a hash brown and a coffee. If we ended up in hospital tonight Michael would bring me this exact same breakfast each morning until we were discharged. It's a comforting routine which makes a bad situation more bearable.

Wednesday, 15 June 2011

Post School Options Bus Tour

Today I went on a parent excursion. I went on a Post School Options Bus Tour organized by Cameron's school. This is my fourth year going on this parent excursion and every year I learn something new.

The purpose of this excursion is for parents to visit the service providers who support students when they finish school. Cameron has two and a half years left at school. If Cameron didn't have special needs he would have one and half years left but we will be offered an extra year. In his final year of school he will be assessed for Post School Options and then we will cross the minefield awaiting us.

Somebody asks me almost every other day - 'What will happen to Cameron when he leaves school?' This is a valid question and as we were discussing today, this is a part of society that is very much hidden away and not talked about.

Cameron's school has acknowledged that leaving school is an extremely scary process for families to go through. I for one am panicking about it now and we still have two and half years left. When your child is young you can not picture yourself with a child leaving school just like when you have your baby and can not imagine them starting school. However I think this is worse. Going into school, although scary, holds a certain level of comforting understanding. We've all been to school and have some acceptable expectations about what to expect.

Leaving school should be an exciting time for a teenager. They should be moving on into an exciting new phase of their life but for a lot of families with teenagers leaving school this is a very scary change. As parents we don't know what to expect because this is not familiar territory for us. After high school I went on to further education so I could start a career and this is not Cameron's future. Even for those students who will be able to enter a workplace it is again not a familiar workplace.

This morning our first stop was at ACTIV which is a supported workplace. To be able to work in this type of environment the employee must be able to look after their own personal needs and not have any medical needs that require a nurse on the premises. They need to be able to work with generalized supervision. The service provides supported training but the employees do need to be dependable and motivated.

At this service nobody works five days, some only work one day. Each person is employed according to their personal needs and abilities. The work ranges from building laundry troughs to packing shoes  and repackaging cleaning products. There is an understanding that the social  context of work is very important so they build this into their workplace.

Cameron won't be able to go into a supported work placement. His personal care and medical needs are too high and he requires 1 on 1 supervision most of the time.

Next we visited TAFE. This is adult further education and this site provides a special needs course. They support students leaving school to continue their education in an adult environment. Quite often by the time students are leaving school they are finally learning and then they are removed from the school environment. TAFE can continue this growth taking students from where they are to where they would like to be.

I'm not sure if Cameron can go into this environment. He certainly couldn't go into TAFE as an independent student, he would require 1 on 1 support. Cameron is not currently learning academically so I'm not sure if this would be appropriate for him. I need to do a little more research.

Our final stop for the day was at Interchange which is an Alternatives To Employment agency. There are many agencies which provide alternatives to employment programs. Some programs are centre based and some programs are community based. Interchange is community based.

Alternatives To Employment is most likely where Cameron will go when he leaves school. During his final year of school he will be assessed for eligibility and then we will be told how much money has been funded for Cameron per annum. We will chose our preferred agency and hope they have a vacancy.

ATE participants are encouraged to identify how they would like to spend their days. They can elect to do group activities or activities on their own however everything always comes down to the almighty dollar and that starts with the initial funding allocation. ATE does not replace school hours, in fact some people will only receive funding for five hours a week, if any. Hardly anyone receives funding for five days of activity. We may get funding for two to three days, if we are lucky. Again we will be restricted with our funding because of Cameron's need for close supervision, if he was not as needy his funding could be stretched further with group activities and one staff member looking after the group.

I'm watching other families go through this process, make some hard decisions and worry about the future. Parents are faced with giving up their careers because their child is not allocated enough ATE funding to allow them to work. They either have to work to pay a carer or stay home. 

Getting out there and seeing what is available is really important but also really scary. I can't stop this transition happening but at the moment I'd rather put my head in the sand. I know that everyone gets it figured out eventually and once we do we will leave school behind and settle into our new life - I suspect Cameron and I will be spending a lot of time together.

Monday, 13 June 2011

We Lost Cameron Again


Last night we had one of those heart stopping moments. We were visiting our friends with the ferret. Cameron didn't get to see the ferret this time, instead he got to say hello to the possums and spent ages feeding a pink a grey galah. My friend is a wildlife carer

We were all scattered throughout the house chatting and Cameron was wandering around the house between us all. I was chatting to my friend when Cameron popped into the laundry to say hi but he quickly got bored with mum talk and headed off. Unfortunately the gorgeous young girls he'd been sitting and admiring had gone out for the night so it appears he got a bit bored.

My friend and I wandered out to the kitchen and noticed the back door wide open. We immediately asked everyone where Cameron was and My Marvellous Man assured us he was in the study. I quickly assured him that he wasn't. A quick look around the house told us Cameron wasn't to be found and he must have wandered outside.

These friends live on a bush block half an hour from town. It was pitch black outside and all their fencing is gone because they were caught in the middle of a terrible bushfire at the beginning of the year. Their house is surrounded with the chaos of a clean up after a fire that burnt everything except their home.

Everyone, My Little Angel included, took off outside calling Cameron. My first immediate thought was check the cars - we've lost Cameron before at their house during a party. The party stopped and everyone searched for our son. He was found sitting in the back of a very nice 4WD car obviously waiting for someone to take him for a drive. This time he wasn't sitting in a car.

We were searching in the dark trying to figure out where he would have gone and contemplating whether he would have headed into the burnt bush, down the driveway or what? The knot in the stomach was starting to tighten when My Little Angel yelled - "there he is" - and indeed there he was walking in through the gates of the driveway. The gates are pointless at the moment because there are no fences,

I was so relieved and he seemed unharmed and happy. He obviously heard us calling and turned back, thank goodness. I'm not sure if he was trying to follow the girls or thought he would walk to town. Who knows!?!

We got inside and discovered Cameron had soot on his face and hands. What had he been doing? Hugging burnt trees? We will never know but thank goodness he came back and didn't hurt himself. For Cameron to take off down a dirt track in the dark tells you a lot about his new found confidence. In the past he wouldn't have been confident enough to walk down that track in broad daylight for fear of falling over - he has come a long way.

As you now know this is not the first time we have lost Cameron. There was the time at the party when he turned up in the car - there were fences back then and the gates were shut. He was about ten years old.

Then there was the time we woke up and could hear his voice. We lay listening to him and then realized his voice was getting further and further away. Cameron was five years old and we had just moved into a new house in an empty new housing estate (thank goodness) We clearly didn't have sufficient security on the front door and Cameron had managed to open the door and leave. His voice was becoming fainter as he walked off down the road. We barricaded that door every night with furniture until the security door was installed and the key hidden.

This doesn't paint us as very competent parents as we seem to lose our son approximately every five years. Hopefully we won't repeat ourselves when he is twenty but this is our lives. Cameron has a body big enough to reach door knobs and strong enough to open locks but doesn't have the commonsense to keep himself safe. We have to give him a level of independence and freedom whilst trying to keep him safe. We live in fort knox which annoys our visitors and when we visit family and friends everyone is very conscience of keeping an eye on Cameron. (Normally)

Clearly the universe thought we needed a little reminder not to become complacent. Cameron is changing and becoming more adventurous and inquisitive. He has realized that there is a big wide world out there that he has been missing and he wants to get out there and discover it.

Sunday, 12 June 2011

You Can Lead a Horse to Water But .....

Cameron has been horseriding with Riding for the Disabled for thirteen years. He started when he was two and a half years old and I believe that RDA was instrumental in developing Cameron's muscles so he was able to take his first independent walk at three years of age.

Over the years the coaches and volunteers have always asked Cameron to thank his horse at the end of his riding session and sometimes this has resulted in the poor horse being thumped on whatever part of the body Cameron can reach. At times he has been encouraged to give his horse a snack or friendly pat on the nose. Cameron has always been initially enthusiastic and then as soon as his hand is close to the horses nose he pulls away and no amount of encouragement or brute force will get Cameron's hand near the horses nose. 

I was talking when Cameron finished his riding session yesterday. (I'm the President - I was busy doing President stuff) My Little Angel called my attention to the fact Cameron was about to dismount. I quickly walked out into the mounting arena. A lot of riders dismount and walk out of the arena independently but Cameron needs one of us to collect him at the horse and escort him out of the arena otherwise he gets himself lost and gets in the way.

By the time I got to Cameron yesterday he was already off his horse and was thanking his horse with a rather hard thump. I was trying to soften his blows to poor Shadow when Cameron suddenly discovered Shadow's tail. He touched the tail and looked at his brand new discovery. His face lit up and he pulled the tail around to show me and his leader. I'm sure he then told me the tail was - HAIR. I looked at him questioning my hearing. "Yes Cameron, it is hair." I couldn't believe what I had just heard. Eventually I had to rescue Shadow's tail because Cameron was walking off with it in his firm grasp.

Shadow has been Cameron's horse since RDA Brigadoon began and they are very suited to each other. Both of them can be fairly laid back in nature and prefer to take the easier option - sit back and observe. I always feel safe with Cameron on Shadow, I know he is looking after my boy and giving him the stable base he needs.

After I had rescued Shadow's tail from Cameron he quickly moved around to Shadow's head and reached for the reins. He obviously wanted to lead Shadow out of the arena like the volunteers were doing with the other horses. His leader offered Cameron the lead rope and let him lead his horse. Shadow was so good because Cameron wasn't at an ideal angle and wasn't as gentle as he needed to be but he was incredibly pleased with himself. He knew what he was doing and he didn't want to stop.

I suggested we tie Shadow up on the fence but Cameron had another idea, he was taking Shadow back to the stalls. That was a good plan except that Shadow was needed for the next session and the riders were already standing at the ramp waiting for their horses.

His leader suggested that maybe Shadow would like a drink of water and we managed to redirect Cameron towards the water trough. Well, as we all know, you can lead a horse to water but you can't make him drink and of course - Shadow didn't want a drink. Cameron wasn't worried, if Shadow wouldn't lean down and drink then he would bring the water to Shadow. Cameron leant down, whilst still holding the leading rope, and scooped a handful of water up. He gave the water to Shadow. He ran his wet hand up and down Shadows nose, from eyes to nostrils, until he felt he needed more water then down he would go again for a refill. Shadow stood there very patiently although getting rather wet and cold. It really wasn't a day for a bath and he didn't look very thrilled.

I could not believe what I was seeing. Cameron was giving Shadow a drink, his way. Cameron was touching his horses nose. It took me a while to comprehend what was happening. I struggled to explain why this was so significant. I yelled out for My Marvellous Man to grab the camera and come quick. I'm sure people were wondering why I was excited, Cameron wasn't doing anything particularly unusual - but he was.

As Cameron's arm went deeper and deeper into the water we decided it might be time to stop him. He was tempted away with another walk and then he was happy to hand the lead rope over.

Even as I am writing this I am questioning my memory but it really did happen. Cameron touched his horses nose independently and without fear. He did it with such joy and excitement. It doesn't seem plausible that someone could ride horses for thirteen horses and still be scared of them but love riding.

The brain is an amazing thing. I wonder what Cameron's brain was thinking for all those years and what made Cameron's fear melt away so suddenly yesterday and when did Cameron's fine motor skills get so good that he can scoop water with one hand whilst holding something in the other hand.

Apparently during the class Shadow gave Cameron another first. Shadow had decided he was going to jump over a log on the ground. I missed it. I wish I'd seen it, I'm sure Cameron's face must have been a picture.

It is so exciting to see Cameron discovering his world and building new skills.

Friday, 10 June 2011

Cameron Played a Joke

Cameron constantly surprises us with what he understands. He can become confused and lost with the simplest little things and then two seconds later he picks up on sarcasm in an adult conversation and cracks up laughing. You have to be careful what you say around him because he does understand.

A couple of days ago we were getting into the car after My Little Angels dancing class. I unlocked Cameron's door and he climbed in. I walked around the car and let My Little Angel into the car and by the time I had climbed in Cameron had his seatbelt on.

Before I could get my seatbelt on Cameron leant across and kissed me repeatedly - again and again and again. I thought it was odd but this is Cameron so I accepted my kisses. When Cameron stopped kissing me I went to put my seatbelt on and realized that I didn't have a buckle. Now this in its self is not unusual. Cameron often accidentally puts his seatbelt into my buckle. Well I thought it was accidental.

As I unlocked his seatbelt and looked up into his eyes he grinned at me with the cheekiest grin and cracked up laughing - he'd played a joke! The kisses were to distract me.

In another family this would have been amusing and then everyone would have moved on. Not for us. I was so proud of Cameron for executing a joke. It took a lot of processing and sequence planning to do what he did. His joke was the main topic of discussion at the dinner table and to be honest I think My Marvellous Man found it a little difficult to believe.

Life with Cameron is certainly never dull. You never know what is about to happen.

Wednesday, 8 June 2011

Why Cameron is No Ordinary Kid - Part 23

Small country towns are notorious for gossip and our little town didn't disappoint. Cameron's illness had rocked our town and there was a growing sense of fear. Our town was very small and it didn't help that I knew a lot of the families with young children because I'd run the town's Day Care Centre, established the Kindergarten class at the school and sold children's clothes, books and toys. A lot of the families in town knew us and knew, or knew of, Cameron.

We heard that the town gossip mills were churning and people thought Cameron had become ill because of his vaccinations. This was obviously not true because Cameron was between vaccinations and wasn't old enough for his 6 months immunization yet. Never the less, some mother's took their children out of town to vaccinate them.

Another theory was that the town water had made him sick. Again this was ridiculous because Michael was in charge of testing the town water and he knew for a fact that the water was safe. He would never have allowed us or anybody to consume it if it wasn't. Some families went to the effort of bringing water into town for drinking. People were scared.

There was an outcry in our extended family because I'd obviously had Cameron swimming in the local pool and that was why he had got sick. Again - wrong. I hadn't taken him swimming at all and even if I had the local pool was well maintained and perfectly safe. You can get Amoebic Meningitis from stagnant water but not running fresh water or maintained pool water.

Things became even worse at home when another child was rushed to Perth with Meningitis. I was sitting in our room when a nurse came in and told me that a child from our home town had been flown down with Meningitis. I was stunned, this child was in primary school, I had taught her when I had done relief teaching. I knew the family. My heart started to pound, this couldn't be happening again. I didn't want another family to go through what we had and were going through and especially a family I knew.

The staff knew I would be upset and immediately told me where to find the family. I ran out of the ward in a blind panic. I got to their room and took a breathe. I knocked on the door and was invited in. My brain went into complete confusion. There was the young girl sitting up in bed colouring in. How could that be? I must have had the strangest look on my face.

I calmed down and we caught up on each other's news. Their daughter had become unwell and there had been no doctor in town. Because of Cameron the medical post nurses were up to date with the symptoms of Meningitis and recognized that this child had Meningococcal Meningitis. If it wasn't for their quick thinking this child would have died. The RFDS was called in immediately and she was able to be given the medications she needed.

Meningococcal Meningitis moves through the body very fast and people can die within hours of displaying their first symptoms. If the correct medications are administered quickly people can be saved but the correct diagnosis has to be made first. This little girl was so lucky the nurses had recognized the symptoms.

I explained what had happened to Cameron but I don't think these parents were able to comprehend how lucky they had been. How close they had come to losing their beautiful daughter. I left them with our room number and they promised to drop in and visit before they left the hospital. I went back to our ward dazed, even the staff were surprised when I filled them in on the story.

Back at home the fear escalated and the medical post resorted to publishing a notice in the local paper to try and calm everyone down.

It was nobodies fault that either of the children had got sick. The odds of two children, living in a small country town and both getting sick within weeks of each other, with different unrelated strains of Meningitis was billions to one. This was just incredibly bad luck and the good luck was that neither of them died.

Cameron's Naming Day Ceremony

Yesterday as I wandered down memory lane looking at everything I had kept about Cameron's birth, naming ceremony and illness and I came across the printed notes, from our celebrant, from Cameron's Naming Day Ceremony. It struck me how poignant her words were and how none of us expected our lives to be turned upside down only 3 months after she read these words. I thought I'd share with you what she said.


Friends, we meet here today to take part together in a simple ceremony. We do so for a number of reasons. Five years ago we gathered to witness the marriage vows of Jane and Michael and today we witness the joyous event of the presentation to the family and naming of their son. They are pleased that he has arrived safely into this world and are grateful for his good health. They want to welcome him into their family unit, to the community of family and friends who have supported them so incredibly through five years of praying and hoping for a child. In appreciation of your support they want you all to share the joy this little boy has brought to them.

Mixed with their happiness I'm sure that Michael and Jane also feel a certain awe at the responsibility that is now theirs. This welcoming ceremony also reminds them that a great deal of their lives will be spent in caring for their child, in nurturing his growth and in guiding his development. Michael and Jane have long wanted to be parents. Just at the point when they had accepted the fact that perhaps they would never be able to have children they met the last doctor in a long series of doctors. As first time parents Michael and Jane have quickly come to realise the importance of a Parent's Love as a nurturing bond.

A Parent's Love  (Author unknown)
A parent's love is something that no-one can explain.
It is made of deep devotion and of sacrifice and pain.
It is endless and unselfish and enduring come what may.
For nothing can destroy it or take that love away.
It is patient and forgiving, when all others are forsaking
And it never fails or falters even when the heart is breaking.
It believes beyond believing, when the world around condemns.
And it glows with all the beauty of the rarest brightest gems.
A many splendid miracle that man cannot understand.
Another wondrous evidence of life's tender guiding hand.

In sharing their joy they also ask that you as family and close friends share a little of the responsibility. The certain fact is the  more love this little boy receives the more he will benefit. They hope that the love and support he has already found will continue to grow for him. The more people to whom he relates the more balanced and rich  his growth will be. He was very much longed for and is now loved by so many people.

So your presence at the celebration for a new life and a new family is appreciated as will be your interest and involvement in all the years ahead. We join together to  demonstrate our willingness to share in the task of guarding this child from evil and in teaching him what a thrilling and lovely thing that life can be.

A Child Learns  (Author unknown)
If a child lives with criticism, he learns to condemn.
If a child lives with hostility, he learns to fight.
If a child lives with tolerance, he learns to be patient.
If a child lives with encouragement, he learns confidence.
If a child lives with fairness, he learns justice.
If a child lives with security, he learns faith.
If a child lives with acceptance and friendship, he learns to find love in the world.

(The naming ceremony)

On behalf of everyone present I congratulate Michael and Jane on the birth of their son and the godparents on accepting the role of guardians. For the grandparents on both sides, Cameron is a first grandchild, so congratulations are in order for all the new grandparents. May they find a lot of pleasure in getting to know this little boy. This ceremony will in no way inhibit Cameron from seeking the truth in his life in any future religious or non-religious belief.

Let us all be aware that our lives are inter-related. That this ceremony has been meant to strengthen the affection and friendship we feel for each other and especially for this little boy. May we all benefit from our involvement with him and with each other. His first months of life have been full of achievement and in surroundings of love and caring. May those months be an example of all the years to come.

May he grow in health to play some worthy part in making life more pleasant and more lovely for all those with whom he comes in contact.


That last line really stuck me. I think that because of Cameron's ill health he has touched more lives and he has played a worthy part in making life more pleasant and more lovely for all those with whom he comes in contact. I'll conveniently forget all the sad and frustrating bits because in the long run Cameron has made me a better person, opened my heart and made me look at the world and myself in a way that I don't think I ever would have if he hadn't come into my life. I wish he could have had a normal boring life but that wasn't the path laid for him or us.

Why Cameron is No Ordinary Kid - Part 22

Now that we were on the ward we were allowed to have visits from our many family and friends.. Everyone wanted to see us so quite often we had multiple visitors in our room. In fact there were times when the nurses had to ask us to keep the noise down because the room was full and everyone was talking and catching up - rather noisily. Thinking about it, it was just as well we had a private room.

Cameron continued to sleep through all the noise, he wasn't ready to wake up yet. The staff would come and hide out in our room for some peace and quiet when we didn't have a room full of visitors.

There were times when there were so many people in our room all catching up with each other that I would just sit quietly and watch it all going on around me. I sometimes felt forgotten in all the noise and emotion. Nobody meant to forget about me but they were all talking about Cameron and sometimes I was all talked out.

One friend has told me about her visit. She caught a bus into the hospital and boarded the bus again on it's return trip. The bus driver asked her if everything was alright because she'd been so quick. She told me she was so upset to see Cameron and felt so helpless, she couldn't stay. She didn't come into the hospital again but stayed in contact through my mum.

In situations like this people don't know what to do to help so they will send flowers, a card, balloons, a gift or a message. There is nothing else they can really do.

We became inundated with flowers, cards and gifts, in particular - teddy bears. The well wishes came from far and wide across the country. I remember saying that Cameron had no option but to pull through  because he was being prayed for in churches of so many different religions across Australia and overseas. Everyone did what they believed in to try and help. It was almost palpable the love that poured into our room every day for our beautiful baby boy.

I saved every phone message, every card, every message written on a scrap of paper. It is overwhelming to read all the love that pours off the paper towards us. Everyone was in such pain at the news of Cameron's illness and most people were offering help in any way possible. I was even offered someones mother because the friend lived too far away to visit herself.

Our room was so colourful. Luckily Cameron was small, unable to move and didn't take up much room in his cot so we filled half his cot with all his cuddly gifts. Some people purposely chose gifts to try and stimulate Cameron and wake up his brain.

Reading through the many messages, cards and letters I realize that at the time I think I only absorbed fifty percent of what they said. I knew people were upset and cared but I don't think I realized how many people wanted to help. I hope I said thank you at the time but in case I didn't - THANK YOU.

Sunday, 5 June 2011

Cameron and the Chickens

Today Cameron discovered yet another thing that has been in his life for years but he has never noticed. Today he noticed that our friends have chickens.

For at least eleven years our friends have had chickens and Cameron hasn't paid any attention to the chickens until today. This morning as he confidently walked down their back steps he went straight over to look at the chickens as if they were a new addition.

Cameron decided the chickens looked hungry so he started to pull up the grass and feed the chickens.

 Our friend gave him some wheat to feed the chickens which he thoroughly enjoyed throwing over the fence but then he went straight back to pulling up the grass and throwing it over the fence again.

He stayed at the fence pulling up grass and feeding the chickens for about an hour before we dragged him inside out of the cold.  But then as the sun was setting Cameron headed back outside, into the cold, to feed the chickens again. I hope there's some grass left.

Cameron is Changing

Cameron is changing and everyone who knows him and particularly those who have known him a long time are talking about it. Every day I am noticing something that Cameron is doing that he couldn't do a day ago, a week ago, a month ago.

He is suddenly able to walk across uneven surfaces without worrying or even looking to see where his feet should go. He used to be terrified of walking on any surface which wasn't perfectly smooth and would walk into things because he wouldn't look up for fear of missing his step. He clearly felt he would fall. Last week as we walked from his school to My Little Angels school he took off without me and ran/walked across four different uneven surfaces without missing a step. There was even a sizable dip between two paths. My heart was in my mouth because I thought he would trip but he was fine and very pleased with himself.

Cameron has always had trouble stepping over things because he would misjudge the distance and/or height. He was walking through a sliding door frame on Friday and I yelled because he wasn't looking and I thought he would hit the frame and trip. No, he stepped over the frame without a glance.

The best description I can think of to describe how Cameron runs is like a new born baby elephant in a hurry. Hunched forward, thumping along, swaying from side to side and threatening to take a nose dive into the ground at any moment. He will sometimes break into a run as we walk home across the school oval and I always watch him waiting for the nose dive which he narrowly avoids by stopping just in time or swerving into a circle. This week he ran off in front of me and not only was he kind of upright he also wasn't swinging his arms out and moving from side to side. His legs were closer together, he moved faster and he was very excited.

He is trying to say words again. Cameron used to have a small vocabulary of words which he could say until he wanted to add a new word and then in order to add the new word he lost an old word. Very frustrating. However over the last ten years his words have gone missing in action. He will come out with words occasionally but as a general rule he gave up on trying to speak. Over the last month I have noticed him trying more and more words. He isn't using them to communicate in a conversation he uses them to label and impress people. It's a start.

Cameron read a cereal box the other day. His sister was doing it so he did it too. I would love to know what he thought it said but it really doesn't matter, he was very proud of himself.

His fine motor skills have improved. Only a couple of months ago he would struggle to clean the food off his plate because he didn't have the skill to manipulate the cutlery to get the last mouthfuls of food off the plate and into his mouth. We would scrape the plate for him and hand him the fork or spoon with the food on it. I've been noticing empty plates and then I realized we're not helping him as much. He still has some challenging meals but there is a definite visible improvement.

We were dreading shaving but as all good things do, eventually we realized we could wait no longer and at Easter Cameron had his first shave. We expected him to react to the sensation by pulling away and probably fighting us like he does when we try to brush his teeth. It has been quite the opposite. He stands calmly and lets Dad or Grandad shave him. I haven't braved up yet. Unfortunately he still doesn't like brushing his teeth.

These and other changes are all very exciting but I have learnt over the years to control my excitement because quite often disappointment has been waiting around the corner and then I am crushed with grief and despair. I know why these changes are happening and this is why it is so hard to let my hopes rise too high.

Cameron has not had a seizure for eleven months and that is the longest he has gone for over six years. Up until eleven months ago he was having a major seizure, which put him in hospital after an ambulance dash, every three to four months. For the last ten years Cameron has been having these terrible seizures which rob him of his achievements. His brain has finally had a chance to recover and recuperate and now it can learn again.

I really, really hope these changes we are seeing are here to stay and I hope Cameron never has another seizure ever again but I am still on guard and watching constantly for fear I am going to hear that stomach churning sound of Cameron convulsing and then having to watch and see what he can and can't do after he has recuperated.

In the meantime I am going to celebrate with him all his new found skills and enjoy watching him play in his new world. I'm going to be dragged around the house labelling everything in sight like Dad was the other morning and I am going to love it because we've never been able to do this before.

Saturday, 4 June 2011

Cameron and Mandurah Wildlife Rescue

This afternoon we went to the Pinjarra Festival. We had the best time, the kids really enjoyed themselves checking out the stalls and sampling some of the food. I found a potter (Peel Pottery Studio) who's pottery I fell in love with so I just had to buy myself a little something. My Marvelous Man sampled (drank) some wine which he just had to buy (Guess who had to drive home?) and My Little Angel went for a horse and carriage ride which she loved.

Cameron enjoyed eating his Churro (Spanish donut - yum!) and listening to the music and singers. He clapped along and on occasion sang along with them. He always shows his appreciation. He got to check out some old cars and couldn't believe it when I told him he was allowed to touch and look at the old truck. (No, not open the door and climb inside)

The highlight of our afternoon was visiting the Mandurah Wildlife Rescue stall. This organization run a Wildlife Care and Rehabilitation Hospital with only volunteers and donations. It is truly amazing what this group have achieved and do every day. They take in orphaned and injured native animals and nurse them back to health in preparation for release back into the bush, if it is possible. Sadly some animals can not be released because they can no longer care for themselves so instead they find homes with caring families.

Our children got to do something very special. They were introduced personally to  one of the joeys that the carers have been looking after since he was a pinkie - Ollie. A pinkie is a baby kangaroo who is so small it is pink - no fur.

Cameron had to overcome his initial fear and after a few minutes was able to hand over hand, pat Ollie but he was happier for My Little Angel to hold Ollie which she did very willingly. Ollie was very co-operative and didn't even wiggle. Afterwards Cameron very eagerly donated towards this incredibly worthy cause.

Check out the fabulous pincer grip and posting ability - you have no idea how long it took to teach Cameron to hold something as small as a coin in his fingers and then to post things into small holes. I was very proud of him today for being so independent and eager to do this. 

If you have nothing to do tomorrow (5.6.2011) and live in Perth, Western Australia or the Mandurah/Peel area why don't you go to the Pinjarra Festival. It was full of fabulous food, lots of rides and fun for the children, really interesting and different stalls for the adults and non stop free entertainment. If you get to meet Jean Luc the magician, trust me, you will not figure out how he makes that pen disappear or that piece of rope suddenly become one long piece. He was standing one metre from me and I still couldn't figure out how he did it.

If you go to the Pinjarra Festival don't forget to visit the Mandurah Wildlife Rescue stall, you can't miss their bright orange uniforms, look for them near the stage. You can pat a joey (sorry, you won't be allowed to hold one - that was a very special treat for Cameron arranged by a very dear friend), you can see the tiny joey's in their baby capsules and even an owl. Don't forget to make a donation so they can help more beautiful animals like Ollie return to the bush and live their lives wild and happy. Say hi to Ollie for us.

If you would like to know more about the Mandurah Wildlife Rescue Organization check out their website - http://www.mandurahwildlife.com.au/

Please note: All content of this post is my own opinion and was not solicited or paid for by any of the organizations or businesses mentioned.