Wednesday, 22 April 2015

White wine and patchwork


This is a hard post to write.  A really difficult one.  A bite your lip; dig your nails in your palm toughie. 


And I don’t mean that emotionally.  I mean it really blinkin literally. 

Because I’m stuck.  Really stuck.
This Friday (24th April) is Undiagnosed Children’s Day.   The day that undiagnosed families, stand up, step forward and flood social media with that all important messaging.  And I’m completely out of ideas.
If I’m honest, when I wrote about Undiagnosed Children’s Day on year’s one and two, I didn’t really think we would still be undiagnosed by now.  I thought there MUST have been some kind of answers.  At least one little oddity on a test that gave us a direction.  So when I wrote, I put myself completely out there.  Full on reality.  I hit you with some scary looking no make-up selfies.  And now there’s not much left to show or reveal (alright I probably left a teensy hint of mascara on there, but it all gets a bit mirror crackingly hard to look at otherwise).

So this time around, how can I put it across differently?  How can I explain how important this day is?  How chronically underrepresented families of undiagnosed children are and why awareness and funding are crucial.  I’ve been desperately trying to come up with something (whilst flicking back and forwards to look at funny memes and cartoons on Facebook).  And I’m getting nowhere.  I’ve considered an insightful drawing, but I have no artistic insight…or talent for that matter.  I’ve considered a timely politically relevant pre-election post, but unravelling the party health pledges just made my head hurt. I’ve even considered a haiku (look, I didn’t say they were good ideas).  But I’m still stuck.

So I’ve started to think about what ties us all together.  The themes that recur. For many, it’s the devastating uncertainty of no prognosis.  For others, not being able to accurately treat unfathomable symptoms.  In some cases, not knowing if future siblings will be affected cuts deeper than can ever be explained. 


But one keeps coming up.  It pops up in the statistics, in the blog posts, in the articles.  In many ways it’s a direct consequence of the unknown.  It affects the parents of the medically complex, fearfully sat beside hospital beds alone. Walking shell shocked down sterile corridors. It impacts the parents of children with unknown developmental conditions; so often misunderstood and unfairly judged as having children who ‘misbehave’.  It affects those sat somewhere in the middle, struggling to find a way to explain the inexplicable.  It affects all of us who have battled for support, not ticking boxes or fitting into the system that is meant to support us.  All who have stuttered over the whats and the whys, even around other parents of disabled children.  All who have inexplicably had to take a breath or hold back the tears as we meet a new baby or watch a child overtake our own.  Never out of jealousy and never out of sadness, just because every now and then a little gut punch hits and a little voice whispers, ‘you are different now.’

Isolation is a running theme and it affects parent carers immensely, even when a child has a diagnosis. 65% of families with disabled children report feeling isolated frequently or all of the time. (Contact a Family). Without a diagnosis, it can make it even harder for families to feel that they have somewhere to ‘fit’. 

And it is rarely the fault of those around us.  Friends can’t fix society.  Or statutory systems.  Or the fact that the woman on the bus last Wednesday tutted and rolled her eyes.   In our case, many people close to us have been immensely supportive and there are no words that can thank them enough.

But truth be told, it’s hard to be undiagnosed and not become isolated in one way or another.  And I’m not afraid to admit that sometimes it’s self-isolation.  It’s hard to know how to move forwards when there is no clear route. 

Only here’s a problem.  I’m sat here writing about isolation and it’s a bit hard to justify.  Finding our place in this new world, navigating this complex landscape has so often been easier than it could have been.  The isolation has been minimised so many times.  And that is because of direct support from SWAN UK and the people we have met.   I’m sat here procrastinating by looking at Facebook and l’m looking at a list of people I would never have known otherwise. 

Because without SWAN UK, there is so much I would never have done.
I would never have sat in a field drinking wine with funny, interesting people two years in a row.  I would never have jumped on a train to Bristol just to have dinner with a group of inspiring women (with wine, I admit – that recurs).  I would never have danced the Hokey Cokey with a 1980s television presenter (I would just like to clarify, that was at a children’s event and was not the result of wine).  I would never have seen a recognisable face in the loud and intimidating landscape of the children’s ward.  I would never have sat in the local pub in our tiny village and been able to talk to another parent who totally understood.  I would never have watched Little J flourish around other children who are all so different, yet just like him at a children’s theme park.  I would never have laughed at social media innuendo on a particularly bad day.  I would never have learned how to patchwork from a mum with actual sewing skills when I decided I wanted a ‘project’ (FYI – I have no skills).  I would never have had so many people to chat to at a disability equipment show, that I missed half the stalls.  I would never have broken down the walls around us by telling people about our experiences so openly.  I would never have kept up the fight to end the isolation caused by being pushed out of the workplace by statutory systems.  I would never have been able to think ‘this is going to be ok’ when things looked so undeniably bad.  Never have had the reassurance of those who have been there and come out the other side.  I would never have had a name for my boy’s unknown condition.  But we do.  He is a swan. 

...So I guess it’s not that isolating after all. 

But it could be so very different.  Because SWAN UK has no long term funding.  Their main grant comes to an end in April 2016.  1 in 25 children are born with a genetic condition and around 50% are likely to be undiagnosed.  SWAN UK provides the only dedicated support in the UK for families with undiagnosed children.  Families who often have absolutely nowhere else to turn.

And that support is vital.  Bringing thousands of people in the same situation together is important.  Having representation for us as a group is important.  Whilst I would love to believe that ‘what about the undiagnosed?’ regularly pops up on health and social care agendas; without a recognised and respected organisation advocating for us, I doubt it does or will.  

Breaking the isolation is vital.  Because whilst not everyone will share opinions or interests, whether you are passionate about green tea and yoga, or partial to white wine and patchwork; when there are enough people there, you will find someone to talk to.  And much like patchwork, the thread that binds makes the distinct pieces flow, no matter how different they may be.
And for us, that is why Undiagnosed Children’s Day matters.

Because with the right support, you will find people to talk to.  You will find people who understand.   You will do things that you would never have done otherwise.  And most of all you will find it a little easier to answer that voice when it whispers ‘you are different.’  Because we all are.



If you would like to donate to SWAN UK, you can, by texting SWAN11 £[amount] to 70070 or via their Virgin Money Giving page.