Tuesday, 29 March 2016

The verdict is in......undiagnosed.

It may come as a bit of a surprise for those who know me, that I didn't really accept that we were 'official' members of the undiagnosed club until 9 months ago.  Rowan had lots of labels, which I won't bore you with again, and life over the last almost 7 years has been complicated, rough and down right terrifying at times.  I was living in a kind of denial for most of it if I am honest. On the outside it would appear that I understood and I was fully on board with the whole 'no diagnosis' thing, and I was comfortable with it.  And I was, logically.  I could say it, but I didn't feel it.  Deep down I still thought we could find out what was going on, and either give him a medication, or a trip to theatre, or the right diet or change of treatment plan and within a few months I would have a relatively typical little boy again, and that chapter of the story would have ended.  Just like had happened with Ayden and Cameron when they were diagnosed with Coeliac Disease.  I wasn't expecting a 'cure', that I accepted a long time ago, but I didn't expect this 'no diagnosis' thing to be an ongoing situation.  I mean he has lots of 'symptoms' and he has lots of 'complexities' and he has had a ridiculous amount of tests, and we are under the world famous children's hospital along with many other specialists, and professionals.  Logic says there is enough evidence, and enough professionals involved that SOMEONE would know what's going on, right?  Wrong.

We're in this 'no diagnosis' limbo for the foreseeable, it's not just while we're waiting for test results, it's not just while we're waiting for a referral to a new doctor.  There is no medication, or diet change, or surgery that will fix all the problems, and there is no 'eureka' moment imminent.  There is no 'final piece' of a puzzle that will complete the picture, we have lots of pieces from lots of puzzles, and we're trying to fit them all together somehow.  You know when you go to the doctor, with a lump.....and you go through the process of blood tests, and scans, and ultrasounds, and you're terrified the whole time, what is it, what could it be.....imagine that, every....single....day.  That anxiety of what tomorrow could bring.  What if?  What if?  What if?

With Rowan at the age of nearly 7, I think every day 'What if?'  What if today is his last day?  What if this opportunity never comes again?  What if we never get a diagnosis?  What if....this is it?  Those 'What if's?' never go away.  This 'undiagnosed' situation isn't temporary.  Our journey with Rowan has a beginning and a middle.......the end is pending.  It's hard work, it's frustrating, it's lonely, stressful and demoralising, it's depressing at times, and it's scary.  But......it's not all bad.  Rowan is Rowan, regardless of whether he has a diagnosis or not.

It has taken me a long time to come to terms with the fact that being undiagnosed isn't a temporary stage, it's not just that we haven't 'looked hard enough', it's not that we are waiting for results.  We've done the tests, some were pretty horrific, and some, as you may know, went horribly wrong.  The results are in, they have been calculated and verified, and the verdict is in.  UNDIAGNOSED.  It was an adjustment and a lot to get my head and heart around.  

So, I have finally, officially, logically and emotionally accepted it, and have come out of the closet. We are HAPPY to be undiagnosed, and we are PROUD to be a part of a pretty amazing, unique, and diverse community that is SWAN UK, every single one of us different, yet every single one of us united.  And from this acceptance, has come motivation.  Never will we let an opportunity go astray and never will an opportunity to educate a person about being undiagnosed be missed.  To you we may just be one undiagnosed family, but actually there are thousands of us.  

Friday 29th April 2016 is Undiagnosed Children's Day, this is a day where 'we' (members of SWAN UK) raise awareness for our children's situations.  To try and raise a little bit of understanding as to why being 'undiagnosed' is important to us, and some of the additional challenges we face.  All families who experience disability face challenges, many of which are similar, and yet some of which are unique to our community.  We also like to raise the profile of SWAN UK so that other families out there can find us, and we can all stick together through the good times and the bad.  Did you know 75% of parents, who's child doesn't have a diagnosis says that they feel isolated?  I am one of that 75%!  Just by networking other families together, through social media or through local meet ups and coffee mornings, that figure should reduce.  Why should we all care??  Because every year 6000 babies are born, and will have a disability that will be undiagnosed.  In 2009, Rowan was one of those 6000.  It happened to me, it could happen to you, or someone else you know!  It matters because Rowan matters.  It matters because I matter.  The 6000 babies born every year matter.
Rowan, 4 weeks old, before it all began

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