By swan uk member, blogger and parent rep for northampton, claire walton - thingsareneverhowtheyseem.blogspot.co.uk
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 two 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 seven 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 seven 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!
All yesterday morning he was counting down the hours, minutes, and seconds to the sound check. We had Remember on repeat, ALL MORNING. 3.45pm 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.
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 18.45, 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!
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!).
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 practising 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.
As published by SWAN UK member, Claire Walton: