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.


Wednesday, September 30, 2015

The journey. Or the road. Or just some long stretch of path...

It's been an interesting few years... I've blogged a lot lot less, spent a lot more time living with Eva, living with Rett syndrome and less time googling it.  Each year I look back and see what has changed.  Over time I seem to have managed to reduce the number of appointments Eva has with doctors but be no worse off.  I've finally started figuring out a daily routine that works for us.  Each year I find a new natural way of doing something that used to be done with medicine or force.  Things are getting easier which may not always be the way but it's the current state.  I personally find anger a little less frequently, grief even less frequently and my strength and resilience increase.  Each year I get a little closer to feeling ready to step up towards a fundraising role, an awareness role for Rett syndrome and for Eva.  My views about Rett syndrome change too.   I feel more passionately than ever that parents need to be assisted to find what their daughter needs as an individual rather than the 'all Rett girls...' that so often prevails.

I have developed a yoga and meditation practice that keeps my body and mind as fit as possible for carrying my heavy girl and the heavy emotions that sometimes accompany.  And I've gone down a new career path of yoga and natural health and changed habits and mindsets along the way.

And Eva.. she's blossoming.  She's horse-riding, she's making friends, she's trying new things, new food, new books and tv shows and new ways to communicate.  She has a fascination for the Dalai Lama that hasn't waned in 2 years and she keenly watches documentaries about him, making comments every now and then that only she can understand.  She still finds it hard to share, she still gets cranky and ignores us sometimes and she still daydreams watching trees blowing in the breeze.  She gets tired and upset when she can't communicate with her friends. 
Her body is getting heavier from sitting in her wheelchair, her legs and her spine are becoming slowly curved and uncomfortable, her speech hasn't changed.  At all. she still goes cross-eyed and she sometimes still gets Rett shakes that tense all her muscles up and make her jerk about. She still chokes on watery liquid sometimes, still can't eat potato chips or hold my hand as we roll in to school. She still has Rett syndrome.  She'll always have Rett syndrome.  But she's still just an 8 year old kid with 8 year old kid needs.  I'm so damn proud of her for just being her. 

It's Rett syndrome awareness month in October and I'm going to try and write a bit more about what its like to live with Eva, to live and love a child with Rett syndrome.  To be real and honest about the highs and the lows and to be on this path that just stretches out in front... a journey with no end.

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