Four years ago today, on the 3rd February 2010, my little girl, then almost three years old, was diagnosed with Rett Syndrome. For a long time, I replayed that day in my head every day, involuntarily reliving it each time. These days, I ‘only’ replay it maybe once a week. This is not
because Rett Syndrome and the destruction it brings to my daughter’s and my family’s life is getting less painful or real, it is just because you inevitably find ways to hide, numb and cope with the painful reality better.
Ten months ago my first blog about life with Rett Syndrome, which briefly mentions the day of diagnosis, was published. I wrote about the drip-feed of reality, the slow absorption of what Rett Syndrome really means for our daughter’s, and our, future. The drip-feed doesn’t stop: today, four years after diagnosis, Rett Syndrome manages to inject another new sliver of fear. I am called by Hannah’s after-school club, telling me that she has arrived asleep and that they are having trouble rousing her. Real trouble, she takes ten minutes to wake and then seems disoriented. Her home-school book then informs me that her left leg simply ‘gave way’ this morning and that she has had three prolonged periods of absence this afternoon. Once home, the partial seizures, for which she is now being medicated, are almost back-to-back. Despite the glorious smile she gives me at bedtime, she cannot manage to stay awake beyond two pages of her favourite book. Happy anniversary.
Four years and nine hours ago I had never heard of Rett Syndrome. Four years and eight hours ago I knew my little girl had it, but really, mercifully, had no idea at all what ‘it’ was. Today, I wish I knew less, fear knowing more, and cannot help but think that ignorance probably is bliss. In the absence of ignorance, though, I will have to choose hope: the hope (and willingness to work hard to make that hope more than just a dream) that there will be no more anniversaries like today in Hannah’s future. Instead, only the anniversaries of jelly and cake, strawberries and champagne, dance-floors and disco balls. I like those anniversaries better, I’m pretty sure Hannah will too.