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.


  1. YAY! Looking forward to reading this again. :) I'm glad MLA has turned the corner and is getting better.

  2. Woah, what a year! I think its so easy to underestimate the effect of a severely disabled sibling on a child. Hopefully this year will bring you bigger and better things. Big hugs and best wishes for a happy new year to you :)

  3. Glad you're back. It looks that 2012 was too challenging no matter where in this world we are living. I'm happy things are going for the better for you. Fingers crossed 2013 will be as itssupposed to be... x

  4. Jane, your post really touched me. We follow each other on facebook but never really know what is happening behind the scenes. I am so sorry to hear that the year was a rough one, although am also thrilled to hear that MLA is back on track. It really is tough what the siblings have to go through. Thinking of you all AND I know that 2013 is going to be a great year. xx

  5. wow what a time you have had. so glad that MLA has turned a corner. I hope wish you the very best in 2013 and that things settle down for you x Sending you much love and massive hugs xx

  6. Thank you everyone. It was so nice to receive such a positive response to my decision to start blogging again. And thank you for your kind words and support about MLA. It has been a difficult year but the corner has been turned and it's onwards and upwards from here.
    Sending big thank you hugs to all of you.

  7. whoo hoo!!! Im so happy you have decided to start blogging again Jane.. i have been waiting for this day... This has been a hard year for your family, especially your MLA.. Im so happy that she is finally back to being herself... Jane, you are an amazing woman and you have an amazing family that you should be so very proud of ( i know you are), You deserve all the happiness in the world.. Good luck with all your new adventures and i look forward to reading them and hearing about them when we catch up again x You truely are WW... Wonderwoman !!!! hehehe.. Again,, welcome back

  8. Thank you Kylie, that means alot.

    Watch this space because I've just posted a gift for you with more to come. xxxx

  9. I'm so sorry, I did not know what had happened in your life this past year, but very glad to read that things are better now. Best wishes for a very happy 2013 x

  10. Thanks Looking for Blue Sky. It's definitely going to be a better year.