My daughter Eva has Rett Syndrome; a rare neurological disorder that in her case, left her locked in a body that would not work for her from the age of 9 months. I went from being a photographer to being a mum to being a rudimentary therapist, advocate and ranter. This blog is here to share ideas, thoughts, therapies, recipes, advice and sometimes have a rant. or two.


Sunday, December 9, 2012

A new room

We've finally moved into a house that only has a few stairs to contend with. It's been a very long time coming and the packing and unpacking has been hellish. But Eva now has the darkest, coolest, most quiet room in the house and is sleeping like the proverbial baby. 
In Australia, summer mornings start early - the sun starts a slow glow from 4am and days are begun with the screech of sulpher-crested cockatoos or crows and then kookaburras 'laughing' - their call sounding like they are cackling maniacally at your attempt to go back to sleep. And in Eva's case she usually doesn't. We've been having 4am to 5am starts most mornings. Until now. What bliss! I feel like laughing right back at those crazy birds.  She's been sleeping til at least 7 and we've had to wake her a few mornings for breakfast.
It also means one other thing that to me is a big deal - she can stay up a bit later at night. Most nights in the past she's been knackered and asleep by 6.30pm. I know most parents would love the chance to spend nights with their kids asleep by that time but I have constantly wished we could just watch a movie together or go and enjoy an after-dinner walk. It's finally happening... Tonight we watched Arthur Christmas (all the way to the end!!) and I got all teary because we finally got to share an evening activity together. 
It takes me back to the days prior to Eva's regression into Rett syndrome when we went camping with some friends and Eva was awake almost all night. She was mesmerised by the fire, the chats, the friends and the excitement of it all. I was so incensed at the time that she wouldn't just fall asleep. What a change...


2 comments:

  1. Emma.. I would love to wake up to the sounds of cockatoos & Kookaburras... (not sure what they are though)....... Hope you are really settled & cosy in your new abode....
    Lots of love........ Janie x

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  2. Hi Janie, I forget that people may have never heard of a kookaburra or cockatoo! There's a very accurate clip on YouTube of what a kookaburra sounds like (search for kookaburra laughing). Thing is, in the wild it's not just one of them it's many and all 'laughing' at the same time! It's quite funny but may be one if those situations where you just have to be there :)

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