I lost an old friend this week. Not in the sense that he passed away, nor in the literal sense that I misplaced him in a crowded supermarket and never found my way back to him. Although, metaphorically perhaps that’s exactly what happened: we lost each other in the crowded supermarket of life, and by the time we realised we’d gone astray, there were just too many aisles and trolleys and shelves of tinned goods to find our way back. Of course, if I hadn’t been pushing a wheelchair maybe I’d have been able to keep up a bit better.
They say that a crisis really shows you who your friends are. I don’t subscribe to many things that “they” say, but this one, yes. “Friendship” is a strange concept in this social media world we live in, where our “friends” are either people we deliberately lost contact with after school but whom we now feel compelled to “accept” when they request our name on their list, or people we feel some affiliation with despite the fact that we have never actually met them.Beth and her daughter.
When most people can claim to have at least a hundred Facebook friends, and spend endless hours informing these followers about their daily activities, it is harder than ever to stay in touch with the “real” friends, the ones we used to actually see and talk to. But it’s these friends you assume will be there when the proverbial hits the fan. It hurts when this turns out not to be the case.
When my little girl was diagnosed with Rett syndrome, six weeks before her third birthday, I knew that life was going to change, but mercifully, I had no concept at that moment just how much. The geneticist who delivered the news told us categorically not to go home and Google the condition, as we would only find the worst case scenarios. We didn’t Google it, but as the months and years have gone by I have come to realise that Rett syndrome is the worst case scenario; no matter how much you know life could always be worse, my nightmares prior to diagnosis had never gotten as bad as the reality which has followed.
Our learning curve about Rett has been a drip feed, a slow absorption of what it really means for our daughter’s future, or lack thereof. That drip feed continues, three years on, and I learn new things about Rett which terrify me and make me ache inside every day. Mostly these things are to do with the little girl we lost and the little girl we may still lose: the sense that she has slipped a tiny bit further away from us; the subtle signs that perhaps seizures are not far away; hearing that a girl who could walk independently at Christmas cannot stand alone anymore; the news that another little girl is on life support, or worse. There is no peace.