NEAW 2015 – The final day

letter_eThis has been the hardest day’s blog to write.  Inspiration has been lacking and I just couldn’t think of what to write about on the subject of “Engage“.  In an attempt to stir my creative juices, I looked again at the many daily updates, photos, videos and statistics I’ve been seeing, reading and “liking” all week, posted by many fellow EGID families on their FB pages, all in an attempt to raise awareness of the illness.  It was as I was browsing that I started to notice that many of them began, almost apologetically, with words to the effect that they were sorry to be bombarding their FB friends with these regular informational posts on the subject, but that it would be for this one week only.

superheroThat’s when it struck me.  This week, 7 days from May 17th to 23rd, I and tens of other EGID families here in the UK and across the world have been fighting hard to raise awareness of this illness that impacts our lives; and we’ve been apologising for it.  We’ve been grateful that we have been able to engage with our audience this week and we’ve almost promised to give it a rest until NEAW 2016 rolls around.  BUT the reality of EGID for us is that we don’t get that break.  We don’t get the chance to focus on it for one week only and then go back to the daily grind of school runs, workloads and running the home.  This is it.  It’s not even just a year-long commitment, but a life-long one and there’s no escape.  I can’t shut down my computer and ignore the posts. I can’t groan inwardly, grit my teeth and ride the week out, thankful that the 24th will soon be here and then breathe a huge sigh of relief that that’s it done for another year.  I don’t have that privilege.

The reason the EGID community has been trying so hard to engage with you this week is the people in our lives who struggle with this rare condition on a daily basis: our superheroes.  Their strength and courage in facing adversity is awesome and their brave smiles bring inspiration at the most difficult of times.

My reasons for engagement are summed up beautifully here by my 2 amazing children:

myfeelins familyfeelings

and with that, there really is nothing more to say.

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One thought on “NEAW 2015 – The final day

  1. Pingback: NEAW 2015 – The Round-up | 7 years to diagnosis

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