I wrote my first ever blog post sat by the side of Hugh’s hospital bed in the isolation area of the high dependency unit. It was 4am and I’d not been to sleep. I watched the sun come up over the car park and began typing away on the tiny little buttons on my blackberry phone. It was cathartic. To put into words all the emotions and fears I’d been bottling up felt liberating.
It’s not that people didn’t ask if I was OK or how I was feeling. They did. But how can you put into words that depth of emotion; those feelings of fear and despair? How can you explain that each night, when you finally fall asleep, you wake moments later filled with an all encompassing fear that grips your heart making it a struggle to even breathe? They knew I wasn’t OK; I knew I wasn’t OK; but the barrier was up. I built a shell, a brick wall around my emotions and kept them there, for fear that if I allowed anyone to see even a chink of the horrors within, they’d all come crashing out, I’d fall apart and never be whole again. And by not saying them out loud, I could pretend that everything was, and would be, fine. If I didn’t say it, then it wasn’t happening.
But it ate away at me, chipping away at my brain, at my soul, until finally I committed my thoughts to a handheld device and sent them out into the ether.
With each post I wrote from that point on, I began to regain a bit of my sanity. It helped order my thoughts and make sense of the crazy, horrible things that were happening. The beauty of it was the anonymity. If no-one knew me it didn’t really count. I wasn’t betraying Hugh by admitting my fears, because no-one knew who he was.
|Little H and Little Mamma, but you can just call us Emma & Hugh from now on!|
It’s been over two years since that first blog post and I’ve gone from anonymous, to semi anonymous to practically selling my soul to Google. It started with a photograph here, an odd slip up or hint there and has turned into an almost shameless ‘outing’ of myself publicly. This is partly due to Hugh and I appearing on the National Lottery show raising awareness for SWAN UK (What? You’ve not seen it? I’ll put it on the video tab.) And partly to do with the F word. Not that F word! The *ahem* fundraising word. You see, some wonderful friends of ours have been
threatening, offering to fundraise for Hugh for years, but we
refused. Partly through pride (he’s our
son, we should be able to provide for him), partly through naivety (We had NO
idea just how much the label ‘special needs’ added to a price tag - £600 for a bean bag
anyone?) and partly through wanting to keep our own business private . Fundraising feels a bit like airing your dirty
linen in public; “This is my son – he’s disabled, look at him, can I have some
money?” Scrap that, it feels a bit like
begging. Or prostituting yourself (though I suspect I’d make much less money
doing *that*). But the truth of it is
equipment, therapies, adaptations to the house, all come at a price; a price we
could ill afford with two wages coming in, let alone with one. And people want to help, they really do.
Fundraising is a way for people that know us to help in a really practical,
meaningful way. (Another practical, meaningful
way would be to bring me wine or do my ironing. #just saying). But whilst close friends and family know the highs
and lows and even lowers of the last three years, other people don’t. If I’m asking people to help with my son,
then I have to be honest about who he is.
So, whilst it feels a little like letting go of a security blanket, I’m
taking the plunge and outing us. Little
H (or Hugh as he’s more commonly called) has his own facebook page https://www.facebook.com/HappyLittleHugh which
you’re welcome to follow and I’ll be linking that to here so that the people
that know me in real life can *gulp* read about the dramas of the last three
So, there you have it! If you’ve come here from the facebook page, please be kind – I never expected the posts to be read by people who knew me. And just a word of warning – the posts from the early days are pretty depressing.
I’ve been Little Mamma, you’ve all been lovely. Goodnight.
You can follow our friends who are fundraising on twitter here: @FriendsOfHugh