We are pretty exhausted here at chez Drake! Elin hasn't slept too well for the past couple of days and the dreaded Dystonia seems to be back again, wracking her body with shakes and spasms and stealing away all of her fun. I hate you stupid Dystonia!!
The week started like this with Elin's amazing run of good days continuing into a second week:
and ended like this today after a full day at school for both of us on very little sleep :-(:
Please leave my baby alone Dystonia! How amazing it has been to see her happy for the past couple of weeks and able to tolerate sitting in her buggy! Not to have to imagine her in distress on the bus all the way to school, to take her wherever we fancy going without it being an ordeal for her, for her to be able to experience even just a quarter of what all other kids take for granted, just by being able to sit in her chair. Not to have to watch her little body twisting and straining against itself whilst she tries to work out what's happening. It's not much in the scheme of things. But it's all we want in the world.
I guess you don't always get what you want. Anyway nobody ever told me the world was a fair place. But they did tell me red wine can help with almost anything and now Roy is scattering Hayley's ashes and I can't take anymore today so I'm off to have a glass of it (haha! A bottle-shaped glass!!)
Chin up. Happy Weekend folks. At least there'll be no 6:45am alarm tomorrow. Every cloud!!