End of Term

That’s it.  We’ve done it.  It’s the end of term.  We have made it through another academic year and as I sit here, at the laptop having completed the first day of the holiday I’m having a reflective moment.

Reflection on the past is a funny thing – there is nothing that we can do to change what has happened and yet we spend a huge amount of time looking back – on things that have made us laugh, cry and what has caused us to look at the world in a different way.  The future is the unknown – a little scary but something we have a little control over.   With a view to the past academic year there have been things that have made me smile, things that have made me sob in despair, things that have made me well up with pride and things that have made me want to fight for all I’m worth.

I’m acutely aware that I have been ill for most of the academic year – infection set in at the end of August last year – I’m now nearly 6 weeks without antibiotics and it’s almost August again.  I doubt I’ve been the best mother, fighter, advocate, partner, patient, volunteer or friend that I could have been.  Some areas of the last year feel like utter failures, others bitter disappointments to those around me and some are just a blur of oromorph and infection.  Small things have become triumphs – those things that seem deeply insignificant to others whilst others seem to have happened on a wing and a prayer and come out ok in the end (I think).

But I need to move on – I need to look ahead as the next year brings its own challenges.  The children have new teachers – new teachers to inform about Ehlers Danlos Syndrome, about platelet function defects, about the quirks my children bring to their classroom.  To explain that although they are statistically performing well that they have spent the last year not having the opportunity to be children – that their fatigue is so great that they can’t have the fun that their friends do.  To try and do this in a way that is relatively devoid of emotion – to present the facts, to fight their corner.   This summer is going to be one of preparation for me – learning and preparing documents and information on a subject that I genuinely wish didn’t exist.

It’s very easy to get into the loop of doom with this – so over the last two evenings I’ve applied one of my oldest techniques to make me think differently.  Looking up.  I have been blessed for two evenings with what has been described on twitter as #skyporn – the cloud formations and colours making evenings of overwhelming beauty.

The next academic year will not be easy – in the meantime, we’re out to enjoy the summer holidays, at the Sealion Keeper’s request “chillax” and be as normal as our weird, bendy, bleeding little family gets.  Ideally not falling over the paving slabs too much while we’re looking up and enjoying what we’re doing.sunset over St Albans 24 July 2013


  1. Jo says

    I wish you a lovely, enjoyable summer. I appreciate what is meant by fatigue…It is hard on these precious children. They try so hard to keep up, work so hard. Sadly because there is little to see unless you know what you are looking for then it is harder for the wider world to understand.
    Enjoy your summer.

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