Tuesday, 25 October 2016

Dreams Really Can Come True!!

So, it's been a while since I blogged, sometimes there is just so much to blog about, that you don't end up blogging at all!  Not to mention that there seems to be absolutely no time to sit and actually type.  Sometimes however, something happens, and I am just compelled to write about it.

So, Rowan, as some will know, absolutely loves music.  He loves nothing more than to put his headphones on, turn the tunes up really loud, and sing as loud as he can.  He says it helps him with his pain, and when he feels a bit sad.  

Rowan's got quite an eclectic taste in music, ranging from Piano Guys, to Queen, Coldplay to Christina Perri and everything and anything in between, more recently adding in Taylor Swift.  However, if you look at Rowan's 'most played' list, there are just 2 bands on that list.  One being Imagine Dragons, the other, Sunset Sons.  Who? You may ask? (don't ask Rowan, he gets very cross if you don't know who they are!).  Yes, a band called Sunset Sons.  

We first heard them about 18 months ago, when checking out the supporting act for Imagine Dragons who we saw in Birmingham.  They were an instant hit with Rowan, and he absolutely loved seeing them as the supporting act.  Since then, his love for Rory, Pete, Robin and Jed has just grown and grown exponentially.  The release of their first album (Very Rarely Say Die) cemented Rowan's love for the band. In the height of any hospital admission, or rough day, while feeling frustrated, upset, in pain, and exhausted, he plugs himself in, and listens to September Song.  'hang on, it's not over, we can find a little somewhere to be, hang on, it's not over, just take a little moment to breathe'.  Being only 7 years old the lyrics for this song may, or may not, be meaningless to him, but it's amazing to watch him try to distract himself this way.

In August of this year, ironically during a hospital admission again, Rowan was listening to his favourite song, Remember.  We were waiting for doctors, and tests, and a plan, he was nil by mouth, and he was in pain.  As he has done a hundred times before, he plugged his headphones in, and turn up Remember so loud, I could hear it word for word, through the headphones.  I snapped a quick picture, and tweeted it to Sunset Sons, I thought they would like to know how much their music helps Rowan, genuinely!  To my utter surprise Rory tweeted us back!  A day or so later, Rory appeared in Rowan's bed space in hospital, while we were waiting to go to theatre for surgery.  I won't divulge the conversations they had that day, but I can say I think it was enlightening for everyone!  The nurses may have all been a bit weak at the knees (after spending 24 hours being briefed Sunset Sons and every single song by Rowan) but Rowan was the epitome of cool, calm and collected.  The one thing Rowan kept saying was that he only had to wait 7 years to come to a gig.  You see, all the gigs so far have been 14+ (except the festival ones) due to licensing and venue rules.

A few days later, another message pinged through twitter, 'How would the big man like to come to a sound check?' I knew how much that would mean to him, but I didn't want to get his hopes up, in case things didn't quite work out for him.  Turns out, it DID work out.  The long awaited sound check day was yesterday.  We came to Helen House for a few days respite, the plan was, we would go to the sound check, come back, put Rowan to bed and then Denise and I would go to the gig in the evening at the O2 Academy in Oxford, leaving Rowan literally around the corner at Helen House.  It was all set, and planned to perfection, as has to be done with a child with complex medical needs like Rowan!

Sound check time!!
All yesterday morning he was counting down the hours, minutes, and seconds to the sound check.  We had Remember on repeat, ALL MORNING.  345pm arrived, and off we went.  Rowan was SO excited, he had even picked a top he thought Rory would like!  As we approached the O2 Academy, we had a welcoming party!  Up the stairs we went, as the band were continuing their sound check, Rowan announces 'it sounds really real'.  We're not really sure what he expected, but he was in awe.  As we walked in the door, the reality of the situation hit him, and he just didn't know what to say, standing right in front of him, was the band he listened to every single day.  Priceless.  Rory asked Rowan which song he wanted (even though we know Rory already knew!!)  Remember, obviously!  Rowan sat on the stool, bouncing his feet in time, taking it all in.

Once the checks were all done, the band descended from the stage to say hi to Rowan.  Somehow Rowan ended up on the stage! Playing the drums and keyboards with Rory.  It's hard to explain how it feels, as Rowan's mum, watching a guy that doesn't really know us, or Rowan, or a whole lot about our 'back story' see Rowan for who he is.  Many, many, people shy away from Rowan, with his backpack, and tubes everywhere, drainage bags etc.  But not Rory!  I deliberately didn't want to give a whole sob story about Rowan, I don't like it when people feel sorry for him, or pity him. Rowan doesn't have it easy that's for sure, but that's just not how we see things, and that's not how Rowan sees himself.  

My favourite picture of the afternoon!  Drumstick up your nose Rory!
As Rowan was banging away on Jed's drums, and Rory was teaching Rowan the beginning bars of Remember (by the way Rory if you see this, can you let me know the notes, Rowan is trying to practice it, I can 'play' piano so can teach him it), under the watchful eye of Pete.  Dave and I had a little chat.  Dave said something to me, that no one has ever said before, and it is something that will stick with me forever.  'What are they treating him for?'.  Dave did not ask me 'what's wrong with him' which is what I usually get asked, and I hate it when people ask that, there is NOTHING wrong with Rowan, his body may not work like yours or mine, but there is nothing WRONG with him.  So I gave a little more information, while trying to watch Rowan.  He was in his element, quiet, taking it all in, cool as a cucumber.  It was time to go, and as we walked back to the hospice, Rowan was singing, and chatting, and he was just amazed.  He said it was the best day of his life, ever.  His dream literally had just come true!

On return to the hospice, Rowan was telling everyone, whether they were busy or not, where he had just been, and who he had just met.  At about 1845, Denise and I were getting reading to head out to the gig, when my emails pinged.  Amongst it, was a Twitter notification,  I quickly checked it.  Went and got Rowan as quickly as I could, and got him to read it.  'We've sorted it so that rowan can come to the gig toni-' Rowan stopped reading, ran around, screaming, jumping up and down, he was SO excited, it was priceless.  I videoed it.  Suddenly he was getting in the wheelchair, barking orders at nurses for medicines, and jumpers, he was over the moon to say the least, kicking his legs, and squealing!

Waiting for the gig to start!!
Off we went, where we found a lovely security guy from Showsec, who handed us a pair of ear defenders that had already been waiting for Rowan, and escorted us upstairs, across the room, to the foot of the stairs to the stage.  Harriet from the O2 Academy also appeared, and got Rowan a chair so that he was comfortable, and introduced us to another security guard, who stood with us the entire gig!  It was amazing!  Rowan was exhausted, Sunset Sons didn't start their set until 915, but after a power nap from Rowan, he was blown away.  The shout out to Rowan when Remember was played, was something he will never ever forget, watching Pete play the bass TO Rowan, was amazing.  The high fives, and fist bumps as they entered and left the stage, Rowan really was treated like a rock star (we are working on the black Rory!).  

Thank you so so so much Dave!
I spent some of the gig watching Dave, watching Rowan.  Rowan was just a little boy, clapping along, singing every word, completely immersed in the music he loves.  Dave was watching, and smiling at him, you did that!  Dave, you made Rowan's dreams come true, and for that we will be forever grateful!  You may never truly understand what that experience meant to me, as Rowan's Mum, it's not something I can put into words. I honestly felt like you guys didn't see his disability, his difficulties. Last night Rowan was in so much pain, his muscles literally gave up holding him up, we had to support him. But there he was, singing his heart out, enjoying himself, something far bigger to concentrate on than his painful legs, and back.

When the gig was over, we headed, escorted, down the back stairs, avoiding all the tipsy crowd, where we were met by another Showsec security guard, and Rowan's wheelchair, Dave took a selfie with Rowan, which is on Twitter! We walked back to Helen House, and Rowan was absolutely exhausted in every possible way, but buzzing!

This morning he got up, and has played the album ALL morning. He even sang responses to questions, in the tune of various sunset songs.....it's amazing how he can turn 'I need, fluconazole, it's already 8 o clock' to the tune of 'I win, you lose, it's only for us two'. He went into the hospice's music room, and was practicing the drums, and trying to remember the keyboard part Rory had taught him. Rowan said to me this morning 'I don't really have any friends at school, but it's ok now, because Rory said I am his buddy, so now I have a friend'. It's hard to explain sometimes, how lonely and isolated Rowan can be. He doesn't get invited to birthday parties, or play dates, he isn't included in many things children his age are doing. People don't always understand Rowan's needs, and he has to miss out, because the forethought wasn't there, or people are too afraid to just ask. Yesterday, Rowan's needs were thought about, nothing was too much trouble for Dave, Harriet, or the Showsec team. Rowan was treated like a VVVIP!!

Dave, thank you so much, words will never be enough. You made one little boy realise that dreams really DO come true if you just be yourself. Sunset Sons, you guys made Rowan feel important, and loved, and gave him an experience he will never forget. Rory, you are absolutely amazing with Rowan, don't ever change, and thanks for making Rowan feel like he has a friend in this world. Harriet, I have no idea what strings were pulled to make last night happen, but we are eternally grateful for everything you did, I mean EVERYTHING! And to Showsec, for ensuring Rowan was safe, and looked after, from the minute we arrived, to the minute we left, and not making us feel like an inconvenience!

Dreams really DO come true.

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

Tuesday, 9 February 2016


Better late than never.
Isn't that how the saying goes?  I have been itching to write this post for 2 weeks and I have had all the right intentions, however between the demanding children and their needs, and university work, and meetings, and appointments, plus trying to factor in sleep it just hasn't happened!  Until today that is.
A couple of weeks ago, whilst Rowan was an inpatient at GOSH, I got the opportunity to go to the Rare Disease AGM.  I had absolutely no idea what that was, but, Lauren (from SWAN UK) invited me to support another SWAN Mum, Lisa (Click here to see Lisa's blog), who was speaking.  To be honest it's everything I hate.  People, strangers, new environment, and a real lack of what exactly it was, however Lauren can be somewhat persuasive when she wants to be, and off I went, leaving Rowan at GOSH with the nurses.  It was time to practise 'adulting', but do I know how to be an adult?  I wasn't so sure!
We arrived at the venue, found where we needed to be, and got a coffee.  There was a bit of 'hanging around'.....which I believe other adults may have called 'networking' but, you know, I am new to this game, and yet to learn the rules!  The AGM then began, there was quite a lot of paper!  Lots of lists of names of attendees, and I think the thing that struck me most, was all these names, and then 'who they were' written next to them, there were lots of people from lots of different organisations.....I was sat in a room full of professionals, me, and them........professional adults.  Crap, I was still a beginner to this 'adulting' and here I had landed myself in a room of 'professional adults'.  I felt like a fish out of water.
However, Alistair Kent, who is the Chair of Rare Disease UK, began to talk.  Rare Disease UK is an initiative of Genetic Alliance UK, in a similar way that SWAN UK is also an initiative of Genetic Alliance UK.  Rare Disease UK supports those people with a 'rare disease' and SWAN UK supports those who 'have no diagnosis'.  There were technicalities around the AGM that went over my head, but the whole experience was mind blowing.  As Alistair Kent began his speech, there was a realisation on my part, he GOT IT.  Everything he said, was true.  Everything we discuss, as parents, privately, within SWAN UK, came out of his mouth.  I got goosebumps.  There was this big realisation that, SWAN UK, is not just a little desk in the corner of the room somewhere, in the dark.  SWAN UK is a part of something far, far bigger than I had ever considered, going right up to the government.  Whilst living without a diagnosis does have some unique challenges, specific to a lack of diagnosis, there are also a number of similarities 'no diagnosis' shares with 'rare diseases' and this was echoed by Alistair Kent.  A man I had never met, was talking about some of the struggles, and the complexities that we face. 
In that one singular speech, from a stranger, I suddenly felt validated, that someone cared, that someone was looking out for us, that someone was trying to make things better for us, that rather than just being 'us' over at SWAN UK we were just one part of a very big community, rallying for change, shouting loud at the right people to be heard.  It was amazing. 
There was a lot of technical information, lots of damning statistics, lots of comparatives from a previous AGM, case studies, a discussion about a new centre opening up at BCH, lots of very impressive adults, talking about very adult issues, and plans.  And I just sat there in awe, inspired.  I literally felt like the world just opened up, and I wanted to be a part of it, but how could I be a part of it?  I was still only practicing at being an adult, and I don't like people, and I don't like new situations, and I don't like anything that would be required to get involved in anything.
However there was this overriding emotional response to the day, that I just wanted to DO something, I want to be a part of something that was bigger than just me and the kids at home.  I wanted to be a part of the change in those statistics, and I wanted to become more experienced at being an adult.  Throughout this complicated, stressful, frustrating, journey with living with a child without a diagnosis, the times I have felt most proud, are the times my knowledge has helped someone else.  I'm not talking about 'solving' someone else's problems, but by fighting my way through the system, it means the next person doesn't have to fight so hard.  That is what I want to be doing, trying to make future generation's lives that little bit easier.  But how can I do that?  How can I get involved in that?
Thanks to the Rare Disease AGM, and Alistair Kent's inspirational speech, I am tackling all those things I don't like, all those things I struggle with, head on.  I am going to be a part of the change, whether I like it or not.  I'm not saying anything else about this right now, but watch this space........
And a big thank you to Lauren, without your persuasion, I would never have been inspired.  You may regret this in the near future, but thank you for letting me practise at being an adult, for a little while.  Who knows where this may take me! 
And if you want to find out more about Rare Disease UK, here's the link Rare Disease UK