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.

Thursday, December 20, 2012

Art for Eva

If ever there was a time of the year to feel gratitude it's probably about now.  But that word doesn't quite sum it up for me.  Blessed, maybe a little closer. Awed, most definitely.  And I feel all this most acutely at the moment because last week our family experienced the most incredible support from our local community.
Last Friday night our dear friends Ryan and Danielle from Ryan Renshaw Gallery had an event called Art for Eva to raise funds towards buying Eva a piece of equipment. It was such an amazing night!  There were beautiful artworks of all kinds all over the gallery, there was delicious food and fancy wine, there were fantastic raffle prizes and most importantly there were a bunch of people all there to gather festively and celebrate all these things in the name of our little Eva.
Ryan's wife Danielle instigated Art for Eva back in 2010 not long after we became friends (we see eye to eye on many things but also physically standing at about 5'2" each!) and raised enough money for us to buy a standing frame and a supportive stroller. She's a dynamo with energy as electric as her big big heart. We weren't sure we would have an Art for Eva again especially since this year Danielle also organised her wedding. But with a very short time frame and a huge amount of help from gallery manager Pia Robinson, we did it. 

Over 60 artists donated works that were all put up for sale with no name attached and for a fixed price. You would get to find out the artist name after buying it. There were some incredible pieces and some big name artists and many works that were clearly worth far more than the price tag. A couple of artists who donated works were too well-known to produce a work under thousands of dollars and their work was auctioned. Art-lovers descended (and lined up at the door) to buy beautiful art and in the process assist us in buying Eva an eye-tracking computer that will enable her to finally have a voice. But it's the artists themselves who deserve a massive and sincere thanks. Their generosity was overwhelming and walking around the empty gallery at the end of the night was testament to their beautiful works. And Ryan came up with a wonderful idea to bring the idea of giving and charity full circle: for the purchaser of the work to get in contact with the artist and donate something in return - a bottle of wine or time or something else. We know one person has already offered his PR experience in return for the art he received!

The night itself was quite simply a big buzz. We've heard from so many people that they had so much fun and felt a real sense of love and community whilst there. We had sponsors who fed and watered us with delicious cheese, salmon, olives, roast tomatoes and bread (thank you my dear gorgeous friends from SISCO bcl) and beer, cider, red and white wine (thank you Shannon and Spiros). Sponsors who helped (thank you Urban Art Projects!) and sponsors who donated big amounts of money (thank you Link at - Assistive Technology who are giving us a massive discount for the computer! and Bank of Queensland who so quickly offered financial support).  We also had raffle prizes donated from a huge variety of sources who so willingly said yes when we asked for their support - what gems!

The tobii c-eye eye-tracking device is an incredibly expensive piece of equipment and something we thought would take us a very long time to acquire. But the Art for Eva has brought us incredibly close to raising the entire amount needed to buy the tobii C-15  and all the attachments required! This device was most likely originally designed for people with cerebral palsy or spinal cord injuries for whom communication is near impossible and they cannot use touch screens. But the international Rett community has found them perfect for many of our girls and women who can't sign, can't speak and can't use their hands to press buttons or screens. Eva may go cross-eyed sometimes but her gaze is the strongest communication she has and we have been using a very low-fi "talking stick" all this year. But a talking stick requires someone to hold it and someone to ask Eva the questions.  And they always have to be closed questions that can be answered easily. The tobii computer will enable Eva to instigate and continue conversations and choose when she wants to speak rather than waiting for us to ask questions of her.  I can hardly imagine how exciting this will be for Eva! Being able to ask for what she wants and to tell me what she doesn't want! But also how daunting, as it will be like learning a new language for all of us. It may take her some time but having this computer so soon will give her such a head-start. 
I can't possibly express how grateful, blessed, excited and awed we feel to have this within our reach thanks to the generosity of our friends and community. So I'll leave a picture instead that says so much.  I look at this and imagine all the things going through Eva's mind but thus far have never heard. To hear these one day will be a dream come true.

Thursday, December 13, 2012

Peaceful warrior

I take a lot of photos of Eva asleep. Rett syndrome affects mitochondrial function and so everyday tasks are exhausting for her.  Eva still requires at least one sleep a day or a couple of catnaps and as one of her friends at kindy remarked, "She's just pretending to be Sleeping Beauty"!  I've got shots of Eva asleep at kindy, asleep in the car, at physio, in the hospital, on the couch, in the middle of dinner, sitting up, lying down. She's fallen asleep in the most hilarious places.  Many of them have been shot at night and they're often too dark to see much detail but I keep them nonetheless because I can remember how beautifully peaceful she looks. Like most parents I gaze adoringly at my child while she's asleep and forget about the annoyances or troubles of the day as I watch her little eyelids twitch and her breath rise and fall with satisfying regularity. For me it's also a chance to see her body at complete and utter rest. There's no teeth grinding, no breath-holding, no crossed-eyes, no hands in her mouth, no trembling or tapping or shaking of legs/arms and not one single thing that could physically identify her as having Rett syndrome. Peace.

And sometimes she's also asleep while her friends watch and wait for her to wake up and join the fun again.  Here she is with her good friend Miss P. Eva and Miss P have a lovely friendship that has spanned just over two years. And we are godparents to her little brother. Her parents are pretty special too! More on them in the next post...

Wednesday, December 12, 2012

Just a wee rant..

Now don't think I'm not incredibly pleased that local councils are starting to provide some playspaces for kids of all abilities. I am. But for goodness sake will the governement and local councils PLEASE get smart and talk to parents who have a child with a disability before they spend more money on ridiculous things. My point: many of the local parks in my state have been fitted either with a euphemistically titled 'Liberty Swing' that requires a KEY to use (the key is of course not nearby - no, you have to speak to your local council to get it and then it takes about 30 minutes to figure out how to strap your child in it) or this one below right:

Now this swing looked like it could be really good. I was quite excited when I first saw it. But there are a couple of things I think should have been addressed by the council before they installed it.

1. For a child too big for the toddler swing on the left, the swing on the right is way too large and can't be adjusted. Leading to what looks like could be kinda dangerous if not just really bloody uncomfortable: choices being ear decapitation or a pirate-eye view.
2. If you're going to the trouble to put in an all-ability swing large enough for a teenager why would you put it next to a toddler swing and not put it on the other side of the park next to the single strand swings that big kids and teenagers swing on i.e. the peers of that person who needs the supportive swing. That's not very thoughtful or indeed promoting inclusivity to put a big kids swing next to the babies.
3. I'm quite sure there are plenty of parents willing to offer advice on what would work for kids with a variety of disabilities. Think of the money you could save by putting in effective and useful playgrounds for kids of all ages/abilities?! Please just ask - there are parents out there just like me: ready, willing, ranting and able.

Ear decap - happy though!

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...