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.

Monday, May 26, 2014

Holiday love

It's been so long since I've written anything here for a few reasons - school, life, rett syndrome and my return to study being some of them... I've thought of catching up on the last year then been daunted by how much I want to write. I've had this sitting unfinished since September last year. .. so here it is.

Last year was a year of firsts in many ways - new school, new friends.  One of our very exciting firsts as a family was to go on a camping trip to a remote-ish part of the Australian coast.  We took so much stuff we didn't need but felt we had to take just in case Eva needed it and we took a trailer load of gourmet food and wine which we really clearly did need.

The place was gorgeous and filled us with the kind of peace that only nature can induce.  We were right on the beach and had the open sea in front of us and hills behind where the sun would set and cast a pinky-orange glow over the sea mist.  There were kangaroos that would nibble on flowers around the camp then bound along the sand as the sun rose over the water and had us feeling like we were in a Qantas ad.  Eva had a great time, we had a great time.

Eva's very special friends miss G and mr R, that she has known since she was born, were with us too and their mum and I watched entranced as they made up games during the days.  It often took the form of Eva being "The Queen of the such-and-such"(ocean, palm tree fairies, beach etc) sitting in her wheelchair-throne adorned with flowers and leaves and beach detritus while G and R were the royal mermaids or the royal jellyfish or just naughty royals who climbed trees while the Queen sat and watched them.  They both got the hang of using Eva's communication book to ask Eva questions and when we lost it one morning miss G was super quick to craft one up within a few minutes using what she could find - a green sticker for YES and a red pom-pom for NO.  Eva loved it and it quickly became the favoured communication board for the kids.

We had been so scared of doing this camping thing because of all the what-if's which although quite reasonable, just stopped us from having an experience that was enriching for us all.  From worrying about Eva's health to worrying about how she'd sleep and whether she'd be ok with the kids running around while she was in her chair... so  many worries...  so so happy we just did it.

In fact we went again at Easter.

miss G with the awesome crafted-up yes/no board

sunrise from the campsite