Perspectives
Every single day for the past nine months, the word 'Rett' has repeated in my mind over and over. And over. And over. It never stops. And even though every room in our home is filled with reminders that we really are living this life - wheel chair, standing frame, arm restraints, paracetamol for my back pain - I somehow still live in denial that this is my life. I fantasise about the day she snaps out of it and says 'mommy' or takes her first step.
While other parents of a nearly two-year old are calling home to tell grandparents about first steps, first sentences, first molars - I'm telling my mom that I couldn't get her wheel chair up the steps and I cried in public.
We found out about Rett Syndrome through our own desperate searching for clues as to what was happening to our little girl. During what we now know was a horrible regression period, we saw our beautiful daughter disappearing from us and literally losing skills she’d acquired, such as holding her drinking cup, overnight. She kept dropping things and seemed to not be able to maintain any grip of anything where as the week previously she could. This was replaced by a frustratingly repetitive hand movement, which was hindering her ability to do anything independently anymore. In addition she gained a new level of anxiety and she lost her balance, to the point that she could no longer even sit up without support. She couldn’t get to sleep, or stay asleep for long. She seemed agitated and frustrated, biting and scratching herself and became more and more withdrawn.
When she was diagnosed, I had two big questions: 'what caused it?' and 'what does it mean for her?' I really wanted to know what caused Rett syndrome and whether there was anything I could have done to prevent it. When we realised she was developmentally delayed, I spent a lot of time berating myself for all the things I felt I'd done wrong. Learning about the genetic randomness of it was oddly comforting - this child was always going to have this condition.
The other big thing I wanted to know - still do! - was what we might be able to expect in terms of what she would be able to do. I wanted the doctor who confirmed the diagnosis to tell us exactly what would happen - unrealistic, I know.