Wednesday, 9 January 2013

How did the Carer Cope?

It occurred to me that I have updated you on Cameron and shared with you the unexpected impact of being a sibling of a brother with special needs but I haven't shared how the carer has been coping.

It's been a big year which at one point had me declaring it was almost worse than the year Cameron got sick. Like MLA my stresses were mounting up and then a final straw broke the camels back. I was exhausted. I kept sacrificing what I needed for my child/children and lots of other people and situations and my energy levels dropped lower and lower. I started doing whatever I could to survive and I was coping with less and less.  Then I discovered I had Adrenal Fatigue.

Raising a child with special needs is physically draining and sleep depriving and worrying and all consuming and slowly, slowly as the years have gone by I have watched myself disappear. At times I can't even remember what I used to be like which leaves me questioning sometimes if my memories of myself are true or just a dream. The old me pops out from time to time but I don't really do the things that used to fill my soul, make me happy and make me who I am anymore.

I was feeling so overwhelmed by everything I couldn't cope with anything anymore which made me feel overwhelmed even more because I was used to juggling so many balls at once. I was upset and sad about everything being so out of control but I still felt positive about life because there was so much good happening too. It was a little confusing.

I became forgetful and extremely reliant on my diary for fear of forgetting anything and everything was left to the last minute. I wasn't as organized as I used to be and consequently I haven't seen my extended family and friends as much or stayed in contact as well as I have in the past and that really upset me.

This didn't happen over night, it slowly grew over several years but escalated over the last twelve months to a point where I was either going to crawl into a ball and rock slowly or change my life and embrace living again.

Several,things happened that saved me.

As a family we changed our diet dramatically which helped all of us and I stepped down from several of my volunteering positions. It took me a while to get used to the idea that I didn't have other responsibilities and I could focus on me and my family and I'm still getting used to that.

The result of all this change was a realization that I had become filled with fear. I used to take risks, plan for the future and reach for the sky and now I was scared to make changes and had become paralyzed with fear. The fear had crept in slowly but it had really escalated over the last few years.

Suddenly I grabbed life with both hands, jumped out of my fear and embraced life again. I've stopped worrying about the future and instead am trusting that everything will work out and be alright just like I used to.

My body is healing. I'm still exhausted and need more time to heal but I'm aware of that now. I know I'm bad at making me a priority and looking after myself - I always put everybody else first but it is time to change that and  I am hoping that in 12 months I will be able to say that I have made me a priority this year and looked after the carer for the first time.

Why Cameron is No Ordinary Kid - Part 53

We arrived at Michael's parents house and of course everyone was very pleased to see us and Cameron. There were cuddles all round and then we settled in.

We moved into Michael's old bedroom which was half the size of our hospital room but we didn't have much to put into it. Thankfully the portacot had been rescued before the removallists emptied our house so at least we had a cot.

Once we were sorted it dawned on us we didn't have a highchair. Nanna babysat and we rushed out to buy a highchair but then a few more realities sunk in - Cameron couldn't sit up by himself anymore. Amazingly we found a highchair with sides that could catch his head if he lent to either side but it wouldn't hold his head up straight.

After a bit of searching we found an insert for the highchair that could hold Cameron's head upright. Between the wings,the insert and the five point harness we hoped he'd stay upright. Thankfully the highchair also tipped backwards which saved him from falling forward.

It was a strange weekend, almost unreal as if it was a dream. Michael and I were able to be a family which was so nice. Going to bed with each other and not having nurses interrupting us was lovely. We enjoyed home cooked meals and relaxed as much as possible.

We had family popping in to see Cameron  who hadn't visited us in hospital. It appeared they had been too uncomfortable to see Cameron in the hospital but comfortable to visit him at home. There was lots of cuppas and cuddles.

And then on Monday morning reality returned because Michael had to fly back to work and I had to start my new role as care giver and therapist. I was scared.

Thursday, 3 January 2013

Why Cameron is No Ordinary Kid - Part 52

The sights and sounds of the city were overwhelming as we walked out of the hospital and towards the car park. Suddenly Michael and I were doing normal things again that felt very strange. We were together without anybody else, making decisions and behaving like everyone else and it felt really strange.

We had to put Cameron into his car seat and fold the pram, things we hadn't done for months. It felt strange feeling elated but nervous all at the same time. Things felt strange because nothing was normal - not even Cameron. This wasn't the child we had put into his car seat that fateful day our lives changed for ever. He wasn't able to control his muscles, fight us or help us. Instead we were putting a limp baby into his car seat and adjusting straps to fit his new size. He didn't smile or gurgle at us, he just lay there.

Normally when somebody takes their child home from hospital they go home to the comfort of familiar surroundings. They can crash onto their familiar couch and sleep in their own bed, dressing in clean clothes, showering in their shower and making a cuppa with their kettle in their favourite cup. Then after they've indulged in their creature comforts they check the mail and phone messages and breathe a huge sigh of relief. Everything is alright now because they are home.

Unfortunately our home no longer existed and all our creature comforts were boxed and packed in a warehouse. We had less than we had in hospital and it all existed within our car.

But we had a plan and we had each other and that was all that mattered. And that was the lesson we took away from the experience - you don't need your possessions to be content, all you need is each other and life. Although I must admit there was a moment of familiarity and calm as I sank into my car seat.

We pulled off with Cameron asleep in the back and we drove to Michael's parents home where we started the next stage of our life.

Wednesday, 2 January 2013

Why Cameron is No Ordinary Kid - Part 51

Before we could walk out of the hospital there was something we had to do, we had to say goodbye to the staff in ICU.

When we had left ICU to move onto the Infants ward the staff had asked us to visit them when we were discharged. We had watched families return and say goodbye to the staff during our time in ICU and the staff were always genuinely pleased to see their patients up and healthy again.

We went upstairs and walked towards the familiar doors and suddenly it felt uncomfortable like we no longer belonged. It was a funny feeling as if we were doing something silly. The doors we had walked through so freely for 10 days straight a couple of months earlier had offered sanctuary then but not now.

We pressed the buzzer and waited for a staff member to let us in. A nurse came to see who it was and we were let in. The ICU was busy and staff were busy, no one was free to talk to us so we had to wait. It felt strange looking at the patients on their beds and the worried parents sitting beside them, we didn't recognize anybody.

Word went round that we were visiting and staff who did know us eventually grabbed a moment by switching with other staff so they could come over and say goodbye. Sadly we didn't get to say goodbye to most of the staff we had spent so much time with but those who were there were delighted to see us and very pleased to see Cameron alive and going home.

After very quick conversations the staff returned to caring for their patients and we said our final goodbye and walked out of ICU for the last time. All that was left now was to go down in the lift and walk out the front doors into fresh air and sunshine. A monumental moment that took my breathe away and left me a little shaky with a huge grin on my face and a worried frown on my forehead.

What is Cameron Up To These Days?

Having been so long since I updated you on Cameron's progress I thought it might be a good idea to bring you up to date.

Cameron is still attending The Institute of Functional Neuroscience three times a week and we continue to see improvements and changes in his brain. The last QEEG was extremely exciting because all of a sudden a lot of the brain matter which had been under functioning was functioning at a normal level. This meant we could change his therapy and make the big push for speech.

Just before we had Cameron's last QEEG something quite spectacular happened. Cameron's teacher, speech therapist and his main doctor from The Institute had a meeting and discussed what each of them do with Cameron, what they felt they wanted to work on with Cameron and how they could all work together to support each other's aims. Collectively they are all working towards speech but school is also focusing on fine motor skills and gross motor skills whilst The Institute is still working to improve Cameron's brain function.

In seventeen years I have never had this level of co-operation between two different agencies let alone three. They are sharing results, plans and staying in contact between meetings. This is really wonderful and will make 2013 a very productive and supported year. We have the most amazing teacher, speech therapist and doctors.

The other exciting thing to happen was Cameron coming off one of his anti epileptic medications. He has gone from three medications to two and if his EEG results at the hospital support our beliefs then in a couple of weeks we will start weaning him off another of the medications leaving only one. Our goal is to come off all his medications if he can survive without them. He hasn't had any seizures so it's looking good.

As Cameron's brain has improved his world has opened up and the rest of us are getting a little less resting time. He's become very inquisitive and observant and needs less sleep. We often find him repeating an action or movement we have just done. We keep finding lights turned on, fans turned off, air conditioners reset, hot plates turned on, outside doors left open, taps turned on, etc, etc etc. He's even figured out that keys open doors but doesn't have the fine motor skill to use a key yet - we're in trouble when he does.

Cameron is following conversations more easily and we are able to trust his yes and no responses much better than before. He will offer opinions and answers during conversations and although we have no idea what he is saying if we respond positively he seems content that he has had his say. He's also a lot more opinionated about what he does and doesn't want to do.

The iPad is still worth it's weight in gold and is used at school, in therapy, at home and out and about. His favourite apps at the moment are the talking apps which repeat what he says. Cameron is playing with his voice and volume although he does still seem to be stuck in loud most of the time. Right now as I type this he is two rooms away deafening me whilst he talks to a talking app and listens to The Wiggles on the loudest volume setting possible. Now and then you can hear him joining in with the songs.

Lately we've seen an increase in dry beds sometimes also with dry pants. Cameron is going to the toilet a lot more independently but still needs to learn to put the toilet seat up and actually wee into the toilet not on the floor but we are getting there slowly but surely.

So on the whole Cameron's abilities are increasing and his world has grown but he still likes most of the same things and can reach anything he wants which is making our life a little more challenging but also exciting. MMM and myself keep finding ourselves telling each other to come and look and quite often he is doing things we never even imagined he would ever do. Life is good.

Tuesday, 1 January 2013

A Fresh Start

It has been such a long time since I have sat down and opened my blog that I had to think twice about my password. Bit sad but that is how life has been lately.

Today is the start of a new year and for my little family a fresh new start in life and time for me to start doing what makes me happy again - writing. This post is going to catch you up on our life and then I can get back into sharing our life with Cameron with you again.

So, why wasn't I writing? Simply because life was too overwhelming for me to share it at the time. And I was too emotionally exhausted to write. I love writing but I need to be in the right head space and I just couldn't do it. A lot of you followed my Facebook blog page and kept up with Cameron's developments and challenges and thank you for that. The support we receive from family, friends and strangers is amazing and lovely. As I said today on Facebook - Cameron has no idea how many lives he has touched around the world - he is definitely No Ordinary Kid

I stopped writing in May and that was during a time in our lives I don't ever wish to revisit. MLA had a breakdown and it crept up on us and left us shocked, lost and distraught. Thankfully the The Institute of Functional Neuroscience who are treating Cameron came to the rescue and have supported us all year with treatment to help MLA. She is still receiving treatment but is much better and hopefully at the end of these school holidays her sessions will be cut back and her life can become normal again.

During MLA's initial assessment process we learnt that she had been deeply affected by life with Cameron and her brain had been slowly shutting down since she was three years old, she was eight years old at the time. It had got so bad she couldn't even tell you what 2 + 3 was, her memory got worse and worse and she became terrified to leave me. Getting her to school became a huge challenge that we lost on a couple of occasions.

MMM and I were completely unprepared for what we were dealing with and it took us into a grieving period for the little girl we had lost and we became terrified for her future. Therapy and assessments were extremely difficult because she didn't want anyone to touch her and all I can say about the staff at The Institute of Functional Neuroscience is - they are our Angels. They coped with so much but persevered never giving up on her. I used to come home after double therapy sessions for both kids exhausted physically and emotionally, sometimes nursing a kicked shin or attempted bite mark.

I am very happy to say MLA has turned the corner. She is happy again and confident. Her memory has returned along with her maths skills - thank goodness. She no longer lashes out or misinterprets our actions and she no longer thinks life is only about her brother. She has become grateful again and can see the blessings she has in her life. We can breathe again in the knowledge that she is alright and will continue to improve.

The whole situation made us sit back and assess what we had done bringing our beautiful daughter into the world. She was very much planned and wished for but we knew the situation we were bringing her into and thought we had planned and arranged to ensure her life was as normal as possible. I doubt there was anything we could have done to avoid the situation but it hurts to know she suffered because of our decisions. We don't however regret the decision to have her - she changed our lives for the better and even this hiccup has changed our lives for the better again.

No life experience is worth it if you don't learn something from it - good or bad. This year has given us much food for thought along with an empty bank balance - therapy ain't cheap. So we had some big decisions to make and the outcome is a bright new exciting future in 2013. We've sold our home, bought a block, we move in a few weeks into a rental (have no idea where yet because we haven't found a rental yet) and we are going to build a new home that will accommodate our families special needs.

Moving means a new school for MLA which is the fresh new start she needs but we are close enough that Cameron can finish his schooling in his wonderful school and graduate at the end of the year. We are still near our family, friends and of course The Institute of Functional Neuroscience which is essential for both our children now.

Cameron has been wonderful during all of this change in our lives. He sat quietly during therapy sessions and allowed us to focus on MLA when needed. He would walk up and hug me when even I didn't know I needed a hug and bring me tissues to dry my tears. Occasionally when MLA was out of control he would growl at her and let her know in his own way that her behaviour was unacceptable. As MLA started to bloom out of her blackness he slowly started to reach out to her by visiting her bedroom, giving her a look, a hug, a kiss and lately cuddling her and pulling her onto his knee for a big cuddle and hug. They are playing together and are now even more bonded than ever and it's helped both of them.

We are all feeling very positive and excited about 2013 and what it holds for us and I am looking forward to spending a lot more time on my blog and learning to relax and make time for me.

I hope you are looking forward to a Happy New Year and Kylie - I promise we will get through the hospital doors and onto the next chapter of our story.