Latest blog HIE Awareness Day is ready to be read online here https://www.fireflyfriends.com/uk/blog/raising-awareness-for-hie/
I’ve no idea how many awareness days there are in the world (I could probably Google it) but there must be loads.
I only have to glance at our emails from my daughters’ school - there’s always one about wear a particular colour for this, or do an event for that (which sends me in to a mild panic as I usually only realise at the last minute!).
All of them very worthwhile, and for great causes.
One is particularly close to our hearts, and that’s the HIE Awareness Day on the 4th April.
Before we had Heidi, I had never heard of HIE (Hypoxic-Ischaemic Encephalopathy).
I was blissfully unaware that HIE was even a thing. I’d had (thankfully) a very straight forward pregnancy.
I’d reached full term. There was absolutely zero indication that things could, and would, go so badly wrong.
Within a very short space of time, I went from having never heard of HIE, to trying to become an expert, so that I could do the best for Heidi, in whatever way possible.
But how can an awareness day help?
When you’re thrown into the world of HIE, it’s frightening.
You don’t know what’s going on, you don’t know what the future holds (the “wait and see” is one of the hardest things about HIE), and you don’t know where you belong.
Surrounded by precious premature babies in the neonatal unit, I remember feeling completely out of place.
Heidi was a corker at 9lb7oz, she filled the incubator, she looked sturdy and fragile all at the same time.
The leaflets given to us weren’t relevant, the milestone cards not appropriate, and the constant explaining of “H.I…what” exhausting.
So, when we felt able to, we tried to make some changes, and find the good in a difficult situation.
We set up Peeps, the only charity in the UK dedicated to supporting those touched by HIE, and we created the HIE Awareness Day. (That makes it sound like we’re pretty official – behind the scenes, it’s all run from our kitchen table; there’s plenty of planning and a little bit of winging it, but each year it’s getting bigger and bigger, and the support we have had is fantastic).
The HIE Awareness Day is a way of reaching people, bringing a community together, who may otherwise feel as lost as we did, especially in those early days.
We use #HeardofHIE as so many people haven’t, until it happens to them.
I really do feel that it could, and should, be talked about (very gently and sensitively) in antenatal classes, so that at least it’s a term people have heard, and know that support is there if ever needed.
There’s so much I’d like people to know about HIE.
It affects us all so differently, in different ways and at different times, and there’s no right or wrong way to come to terms with it.
The HIE community is one that no-one would choose to join, but when you find yourself in it, there really is the sense of “finding your tribe”.
There’s an understanding that can’t be explained.
We all “get it” and do our absolute best to lift each other up on the bad days and cheer each other on on the good ones.
For families like ours, HIE is with us every day. Having one day dedicated to it though is an opportunity to shine a spotlight, and reach more people, so that they can say they have #HeardofHIE.
If you’d like to get involved, please head to www.peeps-hie.org
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