RARE

Or otherwise entitled:

Possibly the shortest post I’ve ever done!

 

Saturday 19^th March 2016.

3.30am – Hannah wakes up, seemingly not feeling too perky and crying inconsolably.

We sit her between us in our bed. Daddy pats her back and holds her hair, whilst I have the task of managing the disposable vomit bowls. Apologies – TMI there again, huh?

(Btw, disposable vomit bowls are THE BEST!)

Blimey, that sounded rather sad then, didn’t it?…like I don’t have a life. Other women may be talking about their latest Mulberry bag or their Louboutin’s or getting their hair and nails done, whilst here’s me, raving about paper bowls!. Sorry, I’m digressing, as usual, let’s get back to the post, shall we?…

It’s reflux time, we suspect.

I won’t go on about reflux – I expect that many Special Parents, just like me, could write a thesis on the subject – All as I’ll say is – I. HATE. REFLUX!!! *grits teeth and shakes fist in an angry manner*

I suppose we’ll have to cancel today. I’ll phone at a more sociable time and explain.

Whilst I then lie awake, stressing (as is usual, after a nasty bout of reflux) both Hannah and her daddy shortly return to the Land of Nod.

How VERY dare they both!

Hannah later wakes as bright as a button (how DOES she DO that?) and then we decide that it’s all systems go…no need to phone and cancel…she seems absolutely fine again, so we have to go see a man about a dog. Well, actually, we have to go see a lovely lady about some photographs.

Not just any lady either!

I’d seen Ceridwen’s work via Cerebra on Facebook and was very impressed. Ceri is the founder of Same But Different – a Community Interest Company that uses the arts to raise awareness of disability and counteract prejudice – and she was seeking models to photograph with rare conditions.

…and naturally, I could think of just the person at Broccoli HQ who could help out.

So I sent Ceridwen a quick email about Hannah and we subsequently arranged to meet.

But this wasn’t just about having some nice photos taken of Hannah. For me, like Ceridwen, it was important to play a part in helping to raise awareness. That’s partly why I set up my own blog in the first place and, through this, I aim to continue to help other parents, just starting out on their own journey, to see that there CAN actually be life post diagnosis – That’s something that’s extremely close to my heart, as I know, first hand, what a devastating blow that can be.

As well as being a photographer, Ceridwen is also a Rare Mama, so she completely ‘gets’ our life and the things and people and ‘stuff’ we have to contend with. You can read more here: http://www.samebutdifferentcic.org.uk/about/

Hannah was an absolute star whilst having her photos taken. She was calm, extremely happy and enjoyed playing with her toys. She also seemed to like posing for the camera! – It’s almost as if she knew that this was a very important thing we were participating in…and you’d never have guessed she’d been up in the night!

…you couldn’t say the same about me though!

It’s just a pity she swallowed her front milk tooth a couple of weeks before the shoot! *sigh*

Anyway, here’s the result of our visit: the link to Ceri’s website and some of Hannah’s photos and my ‘blurb’ that accompanies the feature: http://www.samebutdifferentcic.org.uk/new-blog/2016/4/15/Hannah

According to Global Genes, there are around 7,000 different (recognised – there’s tons that aren’t) types of rare diseases and disorders which affect more than 300 million people worldwide.

That’s a lot of people!

In fact, if all the people with rare diseases lived in just one country, it’d be the world’s 3^rd most populous country!

Ceri’s work has been featured all around the world…and rightly so!…it’s a fantastic and extremely worthwhile project and, as you can see, she’s clearly a very talented photographer. But if we could collectively play our part in spreading the word about rare diseases and actually SEE the person behind the condition, then the world would be a much more enlightened, more tolerant, more inclusive and, perhaps, happy place.

Well, I’ll live in hope on that one.

So, that’s almost all for now my lovely people. Told you it’d be short, didn’t I?

But before I go, the link to Ceridwen’s facebook page is here: https://www.facebook.com/samebutdifferentcic/  Feel free to pop over and give her a ‘like’.

Oh, and please could you help us to spread the word about rare diseases by sharing this post?

Thank you!

Until next time

Annie   xoxo

This post is dedicated to Ceri, obviously! Thank you lovely lady. ❤

…and to all you Rare Mama’s and Daddies out there ❤

p.s. Undiagnosed Children’s Day is today. Approximately 6,000 children are born each year without a diagnosis. That’s just in the UK alone.  Here’s a link for more information http://www.undiagnosed.org.uk/

p.p.s. Both of the extremely gorgeous photos on this post are courtesy of Ceridwen – she’s very talented, don’t you think?