Growing pains

In the month when the clocks have gone back, I seem to spending an awful lot of time wishing I could actually reverse or at least halt time in general. Things are changing pretty fast around here. Or not. Maybe the changes have been so slow and so gradual that we didn't notice them happening. I don't suppose there is a Mum in the whole world who wouldn't tell you there her children have grown up too fast. This is hardly news. So why am I struggling so much with Elin getting older and bigger?
Elin seems to have sprouted lately. We are finding it really, really difficult to lift her and to manage her weight. Obviously we have the hoist for tricky manoeuvres at home, like bathing.  It's not being at home that is difficult though- it's everything else. It's when you are out and the dystonia dictates that she needs to come out of her chair, or she has an appointment or a therapy or you want to visit a friend's house. Try lifting a ten year old who cannot brace themselves or hang around your neck or help you in anyway. Its becoming really hard. Our backs, most days, are in agony.
Coupled with the growth spurt Elin's dystonia has made a weird return, in the sense that she now has random periods of complete stiffness/bending backwards. It's not as distressing for her as her all-over body dystonic storms thank god. But it's not nice to see her straining against her own body and involuntarily trying to bend herself backwards in two. It also makes her very difficult to handle. She's definitely not a baby anymore. I always knew there would come a day when Elin grew so big that we would have to start altering what we do, where we go and how we manage day to day life to keep her comfortable. Of course I did. But that doesn't seem to make the realisation, that this new chapter in our life is pretty much upon us, any easier. I want to stop the clocks, I want time to stand still. I'm not ready. I'm not ready for growth, for secondary school, for hormones and their effect, for Elin to embark on the pathway to adulthood and all that this means. I'm scared. I feel like screaming..
I'm not ready.
I don't know how to be ready and I don't know how to stop being sad about all the things that will gradually shut off to us as Elin gets bigger. I don't know how to stop being sad that I am sad about my daughter growing up, because of the implications for her and for us as a family. I don't want to be sad,  but I'm not ready not to be. We are both so acutely aware of these huge changes lately, it's a bit like going into shock all over again. I berate myself for not handling this well, before I remember what happened to us and to Elin was huge and that will re-surface now and then. As I watch my friends bring up their children in an existence more alien to my experience of motherhood than I ever could have dreamed of, I still can't quite believe this happened.
As we both grapple with this, there is one person who is taking it all in her stride with characteristic strength. It's the person who's face makes everything ok again. She is happy, she is healthy, she is here. She looks at us as if to remind us that changes can be negotiated, anything can be dealt with in the great scheme of things- just think back to ten years ago and all the changes since July 2008. Change? We can do change. As long as we are all together, we can do anything- what else is there???

Once again, we have to take our lead from you, miracle girl. One day at a time. Never give in, never look back and never, ever stop smiling.