Thursday, 7 June 2012


When my daughter was a baby and was diagnosed with this odd-sounding syndrome, I worried about everything. Would she ever walk? Talk? Could we control her food intake? Would she be in pain? Would she cope in mainstream school? Would she have friends? What would she be like as a teenager? What health problems would she suffer? What would happen to her as an adult? Would she still live with us? Could we cope? Could she be happy?

And then I decided that worrying about the future was a waste of time and energy. Planning what you need to plan is sensible, but anything else steals the strength you need to deal with the present.

I knew for many years that my daughter’s scoliosis would eventually get to the point where she needed spinal fusion surgery. But after her consultant gave us a  brief outline of what that entailed, I deliberately didn’t find out much more about it. I knew the details would be terrifying; I also knew the op was years away, so why prolong the horror? When the time came to prepare for the surgery, I asked for the gory details, got them, and was glad I’d not had them burrowing into my brain before I needed them there.

We had found a way to untangle the emotions. We'd unpick the end that was in front of us and not worry about the knots further down the line. Unravelling things in small lengths didn't mean the fear and worry went away, but it made it more manageable.

It’s served us well up until now. But lately, there’s been a problem. Cuts to public services, changes to disability benefits, and the seemingly unstoppable march towards a ‘survival of the fittest’ society, means I’m getting worried again about what the long-term future has in store. Will there be any provision for my daughter once she leaves school? In a few years' time, what are we going to do if the deeply flawed, dehumanising ATOS assessment system declares her ‘fit to work’? What will her life be like? How will we make ends meet? Will there be any organisations, government-run facilities or day centres, anything that will offer her fulfilling activities, opportunities, respect, care, and fun

At the moment, that knotted line feels like it’s tied to a heavy weight. If I tug too hard it's going to come crashing down.

Video is Great Lake Swimmers - Pulling On A Line

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1 comment:

  1. Rachel Stenson9 June 2012 at 08:14

    So, so true and yet I feel I need to preserve all my energy and fight for Eve. Feel so guilty that I'm not taking to the streets (or Twitter) with banners and whistles, protesting and raising awareness of cuts to services.....your words, yet again, resonate loudly xxxx