Double Ed.. 

            Double Ed!

    What's normal?

    A lot would depend on where you are. 2.4 kids some places, waking up in a rainforest in others, maybe a mundane job to pay the bills or perhaps creating art and wondering how to pay the bills.

    For Harry normal is being fed overnight by tube since birth, being in a chair every day, dealing with discomfort every day. And loving Ed Sheeran. Like seriously loving Ed Sheeran!

    Harry took us on an adventure. An adventure of simplicity, of joy, of wonder. The simple pleasure of music that can transport any of us to a place we feel peace, alive, in love with life. That place shone in Harry's eyes so brightly, so clearly.


    Our adventure started with picking Harry and his mum and dad, Jill and Gary, from Schiphol airport and getting to his hotel, the art'otel which was pure icing on the cake for an art lover like Harry.


    We discovered Harry loves jellyfish. And at the hotel there was an installation by the restaurant and at one point it was a piece of jellyfish moving gently across and Harry was mesmerised. Transfixed with the beauty of both great work, but also something that means so much to him.

    The first show was special and over in a flash. Watching Harry his eyes never strayed from Ed, lips never stopped moving with each word of every song. We left to wait for our taxi to pick us up and it's then the real adventure started.

    A kindly soul from the crew told us that if any tickets were available on the day they drop around 4 if you're in the right place at the right time you might get a wristband that allowed you to buy a ticket. Harry? Want to give it a shot?

    That's a simple decision for most of us. Give it a shot to see your favourite band again and if it works out great if not, well, it was worth a go. But it's not so simple when your in a wheelchair. When every train ride needs a lift to get to the platform, the gap from the platform can't be too big and on. And on.

    Gary and Jill are so supportive of Harry, so incredibly loving and attentive and they had no hesitation in supporting this choice and it was left to Harry to make the decision. Yes! Let's try!So decision made we went of to find the cab that would accommodate Harry's chair. A cab that had been booked at 5 in the afternoon with absolute guarantees. That wasn't there. Couldn't be contacted by phone for ages and then said it was still miles away but to wait.


    We couldn't as Harry gets cold. Very cold. So we headed to the train station and found a take away joint that gave us a cup of boiling water and with napkins worked as a hot water bottle for his hands which were like ice to the touch. Whilst waiting for the train a call of nature tapped Harry on the shoulder and as he and Gary went into the stall they were surprised to find an amorous couple who'd forgotten to lock the door hastily getting their trousers back up!

    We get back to the hotel and a glowing Harry heads to bed.

    Another day dawns and after breakfast three Becks head to explore some sights and we arrange to meet later to head to the arena with fingers crossed for tickets. We meet and head to the Ziggo Dome with hope in our hearts, hope that Harry gets to see Ed again. And also knowing that even if we don't get tickets Harry is being 'normal'. He's trying to get tix to a show simply by hoping for the best regardless of being in a wheelchair, regardless of the obstacles. Whatever the outcome it was going to be a success.

    A huge success as we did find tickets! Tickets that were greeted with glee and the biggest smile you could imagine. Watching Harry at this show was very different, this time he took everything in. Looked around the arena and pointed to all the phones shining their lights, watched the crowd. And sang so much more fiercely, so passionately. Alive, so very alive.

    This time we got the train straight back and headed to the bar where the complimentary cocktails for Harry and family were drunk and after a while a very happy and weary Harry went to bed.

    It really doesn't matter what music is special to you. If it's special to you it's yours and no one can take it away. And your music, your band can heal, soothe and make everything alright. Even if just for a moment. And Harry had himself plenty of moments when absolutely everything was alright.

You could say Harry was living in his own castle on the hill.