Our daughter Eva is 6 1/2 years old and is in grade one at a mainstream school. If someone had told me when Eva was 6 months old that this is where she would be at 6 years of age, I probably would have shrugged and said “sure, of course!”. If I was told the same thing when she was 2 1/2 years old, I probably would have burst into tears because, between 6 months and 2 1/2 years of age, everything had adversely changed for her.
It was around 6 months of age that we started noticing some delays in her achieving milestones. By 9 months, Eva had stopped babbling completely. At 1 year of age, she was looking right through us and very rarely giggled or smiled. We thought we had a serious poet on our hands – a mini female version of Tom Waits. Our EMO-baby we would joke, hopefully. Then we wondered whether she had autism but her personality returned, as did her smiles, and her gaze became focussed. However, her physical development was not the same and other things became apparent such as constantly having her hands in her mouth; an inability to grasp or point; tremors in her hands and legs; and weird full-body shaking that we now know are referred to as “Rett shakes”.
Eva was formally diagnosed with Rett syndrome at 2 1/2 years of age. At that time we felt that the future did not look good for her. Over the past 4 years, she has been to more physiotherapy appointments than I care to add up, visited doctors and healers of all kinds; has been stared at, prodded and poked; hooked up to a variety of machines; and talked about way more than any 6 year old should. She was, in the words of most of these people, an enigma.
We now know some concrete things about Rett syndrome thanks to the internet and the Aussie Rett website; forums like ANZACRett and the Rettnet; and a lot of online research. We arm ourselves with knowledge from these sources in order to choose foods, therapies and other supports that we feel will benefit Eva the most. It is also online that we keep ourselves up to date on Rett syndrome research and any information on those Rett syndrome symptoms that affect her.
Living with a child with Rett syndrome can be quite daunting and at times sad, infuriating and draining, but Eva has brought such amazing change and happiness to our lives as well.
We have dreamt a future for her that includes having a set of beliefs (see below), some of which have started to become a reality.
We felt that she deserved a position in a mainstream school just as much as any other child and this we have achieved. We know that we will have to continue to advocate for her inclusion in that environment;
We also believe that she deserves to be spoken to in an age-appropriate manner and be given the same opportunities that her peers. We are mostly there with the latter, but sometimes we have to remind people to speak to her at her age level though she is pretty forgiving as are we;
We believe that she deserves the best medical care we can afford and that sometimes the best preventative care comes in the form of quality food from quality sources;
We believe that if she chooses to wear a tutu and a pyjama top, she can. If she wants to fall asleep in the middle of a maths class, well, that’s not ideal but it’s ok.
We certainly wish that we could take away Rett syndrome but, beneath all the symptoms, we are lucky to be discovering our little girl one day at a time.Emma and Roger, Eva’s Mum and Dad February 2014