Tuesday, 19 November 2013

Cam's 18th Birthday Party - Part 2

Most of the guests had left Cameron's party when we heard a deep rumbling sound coming through the park. The guests who remained were all in on the secret and we all jumped up with excitement because we knew what it was.

We turned and headed for the car park with Cameron in tow. A huge grin grew on his face as we  walked across.
Well to be honest there was a huge grin on every body's faces, it was hard not to smile to be honest and there was a huge grin on Sam's face because he was going to support Cameron to enjoy his birthday present surprise. Sam is Cam's friend who just always seems to be there with Cameron when magic happens.
And this is what we were all grinning about.
Auntie Vicki and Uncle Peter had organized a Harley Davidson motorbike ride for Cameron for his birthday with Swan Valley Trike Tours. It had taken a little bit of organizing but I think it was worth it. Cam went off and changed so he was suitably attired to ride on a motorbike and then the fun began.
Cameron was keen to touch the motorbike and to get on the motorbike with Sam one step ahead all the way so Cameron could see what was happening.

And then we put the helmet on.

Still smiles until the reality of the situation set in and Cameron started to panic.
Sam tried to steady Cam's nerves and I received a lot of very big, smothering hugs. Sam even took over the hugging to help Cameron feel safe. Sam truly is a one in a million, there are not too many 15 year old young men who would feel comfortable enough to sit in the middle of a public park hugging an 18 year old male and holding his hand.

Finally it was time to take off.
Cam wasn't looking too sure but they were away.
We all started to wander back to the picnic site to await the adventurers return. As I walked back I turned to my dear friend and commented that she should feel honoured that our sons were off on their own together. We've never let anybody else go off with Cameron on there own except immediate family and school staff. In the past it had always been because of the fear of seizures but now it's because we've got used to doing it all by ourselves. It was a huge leap of faith for us to let Cameron go off with Sam. 
We had almost settled when we noticed a deep rumbling sound approaching.
 Cameron had had enough. He had conquered his fear and ridden the bike but an hour ride was out of the question.. Even after all the excitement and fear he was still smiling although needing lots of reassuring hugs.
Sam, his sister and My Little Angel were able to have rides which was very exciting for all of them and Cameron was more than happy to watch just as long as we didn't try to get him near the bike again. He did thank Peter, the rider, when he was preparing to leave and now he is proudly showing people his photos and telling people about his special day with his communication iPad. Not many can say they've ridden a Harley.
So Cameron's 18th Birthday Party was a pretty special day but a few things stood out for me and one of them was a short chat with a friend who stood watching Cameron socialize and said - Whatever you've been doing for the last two years has been worth it, Cameron is so different. He's engaged and has improved so much. I had to fight back the tears because I'm so proud of Cameron and what he has achieved over the last 18 years but I'm also proud of our little family and what we have all achieved because of Cameron. Life is pretty good.

Monday, 18 November 2013

Cam's 18th Birthday Party - Part 1

Yesterday we finally celebrated Cameron's 18th Birthday with his family and friends. Most people we know have had evening 18th parties with DJ's, lights and alcohol. We sat back and discussed the relevance of a party like that for Cameron and pretty quickly realized that he wouldn't necessarily enjoy a night party. He's a people person and mainly likes to sit with people and join in their conversations in his own special way. A picnic was much more his thing.

We invited people he loves and adores so he could spend a few hours in a relaxed environment where we could let him wander and spend time with people we know understand him and enjoy spending time with him.

We told Cameron that on Sunday we were going to his Afternoon Tea Picnic Birthday Party. Each time we mentioned it he grinned. Thankfully the mini heatwave we had been enduring disappeared and the weather was beautiful.

Guests arrived slowly which was wonderful because Cameron was able to greet everyone and spend time with them. He loved receiving gifts and took great care to open each one and look at the card. His old habit of ripping small pieces of paper off the present and returning the paper to the gift giver reappeared as the afternoon progressed but everyone was very understanding and at least these days the pieces of paper are no longer microscopic.

Once everyone had arrived it was time for his very special birthday cake which was designed and created by Moira at Delightfully Yours. (You can find Delightfully Yours on Facebook)

Cameron blew out his candles all by himself which was a huge achievement because only a month ago he breathed his candles out and it took a lot of effort.

He then cut his cake all by himself. I hadn't even realized he understood the tradition of the birthday person making the first cut into the cake. My hand is above the knife but he is doing it himself.

Then for me the most exciting part of the afternoon happened. I thanked everyone for coming on Cameron's behalf and asked Cameron if he wanted to say thank you, he immediately signed thank you. He stood in front of me facing everybody and clearly followed every word I said. I thanked everyone for their kind gifts and the thought they had put into them - Cameron signed thank you again. He understood what I was saying and worked with me to thank everyone.

Then we ate cake and the matching cupcakes.

Cameron spent the next few hours circulating around his friends and family. I hardly saw him and he was clearly enjoying himself. He even managed to spend some time playing in the playground with his sister and friends. It had been the perfect party for him.

But then as the sun started to dip we heard a distant rumble and Cameron's surprise gift arrived.

Part 2 of Cam's 18th Birthday Party coming tomorrow.

Saturday, 12 October 2013

Happy 18th Birthday Cameron

Cameron turned 18 years old today and it feels like an extra special birthday.

18 years is a major achievement for anyone, it means you are now an adult and ready to spread your wings and embrace the next phase of your life. For some young people they head overseas for an adventure, some head to university and start studying towards their future career and others venture out into the employment maze. Cameron's next step is a little different but just as exciting.

Over the years the idea of Cameron living to become an adult became something I didn't think about for fear it wasn't going to happen. He has had to fight to live so many times that I honestly can not remember how many times we've saved his life. But that fear has subsided over the last two years since he started attending The Institute of Functional Neuroscience. It almost feels like a fresh start.

This morning we woke Cameron up so we could celebrate as a family before Dad headed off to work. I kissed him to wake him up and wished him Happy Birthday and his eyes fluttered open with a smile. He understood it was his birthday and that in itself was wonderful. In the past we've never really known if he's understood that it's his birthday and what that meant. This year he seems to understand.

Cards opened and presents unwrapped Cameron had a huge smile on his face and settled down to watch his new Wiggles DVD on his very own TV. This year Cameron noticed his cards first and opened them easily showing how far his fine motor skills have come. He also unwrapped his gifts more quickly and easily.

Breakfast was a stack of pancakes with candles on top and as Cameron walked into the kitchen his grin grew. He walked straight up and breathed at the candles to blow them out and succeeded in extinguishing most of them. This might not sound very exciting but we have spent years teaching Cameron to blow out candles and we got there eventually but as the seizures worsened during his teen years he lost the skill and last year he just looked at his candles blankly, unsure what to do.

The day ended with a family gathering at our favourite restaurant - Sidernos in Balcatta. Cameron loved having his family around him, changing seats whenever he got the chance so he could be close to everyone. He was spoilt again with gifts and cards which he thoroughly enjoyed before tucking into a delicious meal. We finished the meal with dessert and the staff surprising Cameron with a candle in his slice of cake and the waiter singing Happy Birthday to him at the top of his voice. Cameron was so delighted he sat stunned holding the waiters hand with a huge grin on his face. We were all grinning.

After the shock subsided he set to work trying to blow out his candle which he managed after a few attempts.

It's been a special day and we are all heading to bed with a special glow in our hearts. Cameron has thoroughly enjoyed his special day and seems so much more grown up than he did yesterday. It feels like we are standing on the top of a very tall mountain that we have climbed for the last 18 years and are now looking out over a new world that we are about to step off and explore. I think exciting times are ahead.

Sunday, 28 April 2013

Our Latest QEEG Results

Cameron having a QEEG

Yesterday we got Cameron's latest QEEG results and things are a little complicated at the moment. He is still doing really well and his brain is still improving but we've had to take a step back in his therapy because his brain didn't respond as expected to the last change in this therapy.

Cameron has been growling and whimpering during therapy sessions while he is on the stimulation machines and this shows that it has been stimulating a section of the brain that we didn't necessarily need to stimulate.

At home I had noticed that he was becoming very unbothered by life. Why should he get his shorts out of the drawer or lift his leg up so I could put his shoe on. He was becoming very lazy and expecting me to do it all for him without any desire to do it himself. He couldn't be bothered. Well it turns out this is all the same part of the brain and definitely not the outcome we were after.

We've changed his treatment plan back to how it was six weeks ago when he was going from strength to strength and hopefully his brain will respond positively.

At the same time Cameron is also coming off another of his anti seizure medications. This is so exciting and he is two reductions in and doing really well. We introduce the next drop tomorrow.

Last week I noticed Cameron repeating words we hadn't heard before such as Jess, Muzz Buzz, car park. He doesn't say them like you or I but you can tell what the words are he is trying to communicate. He is also wanting to help with household chores such as putting clothes into the washing machine, carrying shopping and drying dishes. He seems to have reached another level of consciousness - very exciting. Hopefully the next few weeks will see an even bigger awakening.

Once he is off this medication that will leave him on only one anti seizure medication and that is incredible. He has never been on only one - ever. Our dream is to have him on none.

Cameron during treatment.

Friday, 26 April 2013

Cam and Sam

Some of you will remember Sam, Cam's friend. He was the one who helped Cameron climb the climbing frame and he seems to always be around when magic happens. Sam has a gentleness about him that Cameron responds to and he takes the time to wait and gently guide Cam.

This weekend our families caught up and Cameron wandered into the room Sam was in to see what he was up to. Sam had his electric guitar out and Cameron was intrigued. In the past Cameron has interacted with guitars but it has been at the risk of the guitar owner and really this time was no different.

Sam helped Cam to sit comfortably and then helped him to hold the guitar. I was in the next room watching this all unfold from a distance and it was a very calm and lovely scene to watch. Cam was excited and remaining calm. In the past he has been less than gentle in situations like this but I watched as he strummed the guitar with a grin on his face and care in his moves.

Sam stayed next to Cam but let him experience the joy of making music and be free to do what teens do.

It was another magic Cam and Sam moment that we managed to catch on film.

Thursday, 25 April 2013

It Makes You Think

17 years ago we were living in the infant ward and watching a sleeping baby who wasn't waking up. Cameron had made it out of ICU but was still not expected to survive by the hospital staff - we had different thoughts. Call it denial or call it hope we hadn't given up, every day was filled with optimism for the future, whatever that may now mean.

17 years later I sit here typing watching my son watching The Wiggles on TV whilst flipping through a magazine with one hand and interacting with a talking app on his ipad with the other hand. He is loudly interacting with the talking app in sounds that kind of resemble words but aren't really whilst not taking his eyes off The Wiggles. He can multi task.

It has been 17 long and exhausting years of love, therapy, school, appointments, doctors, hospital dashes, ambulances, cuddles, medications, alternative practitioners, supplements, friends, family and hope. It hasn't stopped for a single minute because that is what being parents means - the love never stops and you will do whatever it takes for your child to help them along their journey to reach their life goals.

People have told me over the years that I am incredible, amazing, inspirational. That they couldn't do it and they don't know how I do it. But the truth is I am no different to everyone else it's just that my life journey took an unexpected turn and I am doing things a little differently to everyone else in my life. You would do the same for your child.

Having lived in this different world for a while now I have realized that everyone copes differently with their change in course and I think that is what people see more than super human parenting, Some parents fall apart emotionally at the beginning and need help to get started. Others hold it all together for a really long time and then fall apart and need help to pick themselves up again. Some appear to never fall apart but don't believe them, they are falling apart when nobody is watching. And some people fall apart on a regular basis and need someone to help them along their journey permanently..

Some parents drink or smoke, some eat, some run, some shop, some work tirelessly for charities, some fill their days with everything and anything. This is how they cope. Some run away but I don't think they do that lightly. Marriages fall apart, friends are lost and families become isolated

But this is all part of the journey. When you find yourself on this new path everything you knew and believed is challenged. Your plans are halted and challenged. You are forced to step back and think about your life, your goals, your dreams, your beliefs and your priorities. You spend hours questioning the world, the universe and everything in it. You question your place in the scheme of things and why you do what you do. You search for meaning and signs. You change as a person and sometimes the people around you aren't able to join you for the ride.

Some people get very angry and people only see the anger and not the reason behind it. Some people drink a lot and people only see the the empty bottles not the reason their empty. Some people let themselves go or change their appearance and people don't see the reason why, only that they aren't them anymore. It's understandable that those around us get confused, we have changed and we have new insights into our lives that are difficult to explain. We are on a different life journey and we can't return to the old one.

I know I've changed and I'm still changing and it's all because of Cameron. I have questioned almost every belief I had and almost everything in my life. I look at people differently and look at relationships differently. I value life differently and no longer value things like I used to. I am far from the path I was headed for and I don't think I'm sad about that. I wish Cameron hadn't got sick but I'm not sad that I've changed because a lot of it is good change. Cameron has opened my eyes and made me stop and ask why? .

Everyone changes as they journey through their lives but I think when you have a child with special needs you change paths suddenly and therefore the person you would have become has gone and suddenly with your child you turn the corner and journey along different paths together. Thankfully it's much easier to journey together.

Tuesday, 23 April 2013

World Meningitis Day 2013

Meningitis is a disease that can make you feel powerless. You watch your loved one fight for their life and holding their hand is the only thing you can do. World Meningitis Day is a day when you actually can do something - you can try and save others from the same fate.

On the 24th April meningitis organizations around the world are uniting to raise awareness of this disease, increase awareness of the signs and symptoms to watch for, appeal to their governments to provide scheduled vaccinations for the strains of meningitis we have discovered vaccines for and to  push for further research to hopefully find more vaccines to halt the strains we can't vaccinate for yet.

A lot of countries have meningitis organizations usually formed by distraught parents who have lost their children or who now live with children who have life long disabilities because of their brush with death.  Most of these organizations have come together under the umbrella of CoMO - the Confederations of Meningitis Organizations. Currently CoMO's head office is in Perth, Western Australia sharing an office with our australian meningitis organization - The Meningitis Centre.

The Meningitis Centre was created after the founders daughter survived Pneumococcal Meningitis but was left with life long disabilities and her father wanted to help save other families from the devastation which had affected his family. Perth also has the Amanda Young Foundation founded in memory of Amanda who died after developing Meningococcal Meningitis. These two organizations have worked hard to increase awareness of meningitis in Australia, support research and achieve scheduled vaccinations to save future generations.

Our personal meningitis story started 17 years ago when our baby son developed Pneumococcal Meningitis at 5 1/2 months. Miraculously after 10 days of fighting for his life in ICU and two months in hospital he won his fight but life was changed forever because our baby left the hospital with severe brain damage. epilepsy, partial deafness and severe muscle weakness down his right side.

Meningitis organizations are sometimes the only point of support for families who have been through this horrible journey. Our family couldn't spell meningitis let alone understand what had happened and a lot of comfort was found in a little Meningitis Centre pamphlet we found in the parent room of the hospital. The Meningitis Centre had been formed and they'd put out their first pamphlet. 17 years later they do much more than one little pamphlet. They distribute information and literature to hospitals and any organizations who request them, they give awareness talks so medical professions can understand the impact the disease has on families, they provide on line and phone support to anyone who wants information and/or support. They collect data and work with researchers and government departments to ensure research is continued, community awareness increased and vaccines are scheduled.

For World Meningitis Day we Join Hands for Meningitis to raise awareness. Joining hands is a symbol of solidarity, strength and support. Linked together we are strong and supportive. When someone is lying in bed fighting for life holding their hand is often the only thing you can do to physically support them and afterwards they often need a helping hand to journey through life.

So please, on this World Meningitis Day, visit the CoMO website and if you are outside of Australia and would like to connect with a meningitis organization in your country this is the website to help you. http://www.comoonline.org/ and their facebook page https://www.facebook.com/ConfederationOfMeningitisOrganisations?fref=ts

In Australia please visit The Meningitis Centre website. http://www.meningitis.com.au/ and their facebook page https://www.facebook.com/MeningitisCentre?fref=ts

And if you live in Perth, Western Australia and are free at 11.30am please come and join us in the Murray Street mall to Join Hands for Meningitis. Imagine a line of people down Murray Street mall joining hands to show their support for the families who have been touched by meningitis and showing the government that we care and want scheduled vaccines to halt this disease.

If you can't join us in the Murray Street mall that doesn't mean you can't show your support. Take a photo of yourself, your family and friends Joining Hands for Meningitis and post it on the CoMO and Meningitis Centre facebook pages.

Please don't let this happen to someone you love.