Later that afternoon she had slipped off into the playroom to be with her books again and I asked my father to check in on her. When he came back to the table he had the most ginormous smile.
‘She can say “bowtie”. Did you know?’
‘I had no idea she even knew that word.’
‘I was on the sofa next to her and she took both sides of my bowtie, just feeling it between her fingers like this.’ He showed me how she had felt his favourite bowtie. ‘Then she said it so beautifully: “bowtie”. Perfect.’
It was a wonderful end to a rather more challenging day than I had anticipated. After that day I realized something, how much Iris compartmentalizes her life. This celebration at her grandparents’ house was difficult to handle because it wasn’t what she had been expecting in their home. She could handle change beautifully when it was on new ground – in fact, she relished it – but not there, not in that safe place. But sometimes there is no way to prepare her for those events. Life just happens and we have to be there to support her when it does.
I spoke to my brother about it.
‘I don’t think it’s so bad, you know,’ he said. ‘She needs those experiences – the bad as well as the good.’
I saw he was right. If we wanted to move forward, there were always going to be difficulties. And as long as we can help her through them, then that can only be positive in the long run. But my heart wanted to let her be for a while. When I used to work with horses I could tell when they needed a break; it was a game of give and take and I had that same sense with Iris.
Iris and I sat side by side on the sofa with the big heavy book on our laps packed full of photographs: bike rides, outings together, Iris and Thula in the snow, in the bath – all our tales of adventure. She turned the pages delicately, each revealing another day and another memory of how much she had accomplished and all the joy she had experienced. It was as if she was reliving those moments – her hands were twitching with excitement and she hummed contentedly. Her words were flowing – ‘knight, castle, water’ – as she saw the photographs of Warwick Castle. Thula jumped up on to the arm of the sofa and purred. We had just fifteen minutes before we were due to leave for Sweden and I wanted Iris to have all this fresh in her mind, boosting her confidence for the trip ahead. As she closed the book she ran her finger across the musical instruments that decorated the cover, saying their names as she went. I got up and Thula took my place so I left them to say their goodbyes while I packed a last few things into the car for our journey to the airport.
‘Rag ’n’ roll, let’s go,’ Iris said as she met me at the door. She was ready.
The journey had always been in my mind the greatest hurdle but Iris had coped extraordinarily well thanks to a very helpful special assistance supervisor who had found us a place to set up camp at the airport, and the noise-cancelling headphones Iris had once on board the plane. She had navigated all the ups and downs of the trip better than I could have believed possible, which gave us all an incredible boost of confidence. But when we arrived at the flat it was hot and much smaller than we had anticipated, high up at the top of a stone spiral staircase in the old town. We couldn’t open the windows without fear of Iris falling and in all my planning I had overlooked the fact that there was a world triathlon event happening that weekend only one cobbled street away. The air filled with crashing from the barricades being assembled all night. Iris couldn’t sleep and she was up for good by 4.30 a.m., so at about six we left the flat to explore Stockholm on foot in the hope that we might find a bakery open. We made our way past the Royal Palace that had turned golden in the sun, went across a bridge and came across a beautiful park called Kungsträdgården, the King’s Garden, with many fountains lined either side with Japanese cherry trees.
My intention to see Stockholm through Iris’s eyes came to life as she played happily with the water at the Fountain of Wolodarski and the ornate Fountain of Molin with its mythological characters all listening to the river spirit Nix playing his harp and six swans offering fresh water to passers-by surrounded by willow trees. Iris loved feeling the cool water falling through her fingers and the texture of the graceful bronze sculptures. I watched her climb on top of one the four lion sculptures that flanked the statue of Charles XIII. She sat there with so much confidence, like Lucy sitting on Aslan in the golden morning light. Even the noisy street-cleaning vehicle couldn’t break the spell as she inspected the curls of the lion’s mane and felt the cool bronze and the differences between where it had gone a shiny golden brown after many years of human touch to the more textured untouched green surfaces.
By lunchtime we were off on the bikes and exploring Stockholm. The city’s majestic beauty and its incredible light swept away any negativity I had felt cooped up in the rafters. We all felt refreshed with the wind and sunshine, flying along the old cobbled streets and out by the water. Rows of boats and ships were moored at the shoreline. We left our island over a bridge and on to another to reach Skeppsholmen with its views of the Baltic Sea. Iris laughed hysterically as she saw three Swedes jump into the water off a pier.
‘Splosh!’ she said as they made a big splash in the cold water and she giggled as they climbed back up for another go.
The bike rides were an important part of our trip; they gave Iris freedom but also safety. She could manage anything it seemed on the back of the bike. I was astonished to see how she managed chaotic traffic lights with crowds of tourists bustling by. We passed building works, shipyards and trams. She was safe in the slipstream of her father, her own bike lane within ours. The noisy streets and new environments were exhilarating if you were moving on through.
The following day we were all ready and dressed in good time for the wedding. Iris looked adorable in her blue and white print dress with rabbits, birds, butterflies and a white cardigan. The ceremony took place at Gustaf Vasa kyrka, a special place for the bride’s family: Carolina’s great-grandfather was a pastor there for thirty years. It is the most spectacular church with a sixty-metre-high painted dome and Baroque-style sculpted altar in green and white marble with details in gold and shining chandeliers.
As soon as we entered Iris was transported into another world filled with art and music. Sitting quietly on a pew on her own she looked tiny against the tall columns and arched windows beyond. She sat, just taking it all in for a while, looking at the figures carved into the stone and the angels in the blue sky, the perfect symmetry surrounding them. The pillars and windows provided a rhythm that excited her and after a few minutes she walked off to explore on tiptoes. She played briefly with the piano while the other guests arrived. With help from P-J she uncovered a beautifully handpainted harpsichord, then an organ too. As soon as we all started to take our seats she came and sat quietly on my lap. The dark blue sequins of my grandmother’s dress caught her attention for while, she gently ran her finger across them as they glinted in the light. Then the service began.
Watching Carolina come down the aisle in her ivory silk boat-neck dress and veil I felt a sense of calm. She looked so elegant on the arm of her father and incredibly happy, as did my brother. We were all together to witness and celebrate their wedding, I was surrounded by our family and friends, and above all Iris was with us too. We sang hymns in Swedish and in English. Iris behaved beautifully throughout the whole ceremony; she was silent and peaceful, loving the music and the happy atmosphere. When Tara, an old university friend of my brother’s, sang ‘At Last’, a forties song written by Mack Gordon and Harry Warren, I watched Iris’s enchanted face and I cried for many reasons, happy tears for my brother and for us. As Iris smiled at me, holding perfect eye contact, her face so open, the relief I felt was overpowering. It was exquisite happiness.
Outside, we threw confetti with Iris happy in my arms and then she checked out the wedding car, saying ‘beep, beep’ as she tried to turn the steering wheel. Of course, Iris was still Iris and had a book in her lap. She settled down, turning the pages with it resting against the wheel.
During the group photographs she read her book as she perched on P-J’s shoulders. Luckily my brother wanted her to be able to be herself – and the book happened to fit the colour scheme perfectly.
The next challenge was a ride in the bus towards the boat where the reception would be held. The bus wasn’t as stressful for Iris as I had thought it would be and she enjoyed the talk about Stockholm from Carolina’s brother. She looked so grown-up sitting in her seat, her hands calmly in her lap. She wasn’t fidgeting, just still, happily soaking up the atmosphere and all the information. Once on the boat Iris was in her element, surrounded by water shimmering in the sunlight as we left for our adventure in the Baltic Sea. With her hair blowing in the wind she smiled and giggled at the waves crashing against the side during the drinks reception. Of course my father couldn’t resist the odd cuddle and everyone was thrilled to see her smiling and interacting. It wasn’t that Iris’s autism had left us or that she was magically cured, it was just that she was now able to manage new environments and people in a way that she hadn’t before and for longer periods of time.
‘Iris loves boats, doesn’t she?’ my aunt Celeste said. ‘Just look at her, she’s beaming.’
‘She’s always loved looking at water,’ replied my mother.
They were right. The expression on Iris’s face was pure joy as she looked out on to the coast and the waves from the boat.
Each day of the holiday Iris asked about Thula. ‘Where’s cat?’ she would say, and on a couple of occasions she felt homesick, missing her best friend. We showed her photographs and videos, which helped, but then afterwards she became sad again, so I counted down the days for her. She suddenly had a new interest in the days of the week, and finally it was Monday: ‘Thula day’.
As we locked the door of the flat and made our way down the many steps Iris said, ‘Let’s go home’ and off we went back to the Shire, past the palace where Iris had said ‘soldier’ and ‘bye, boat’ to all the boats in the marina. As the aeroplane took off Iris said ‘The End’ and it was – a wonderful end to Iris’s first trip abroad.
Then we were home. Thula and Iris stood side by side in front of the sofa in the garden room as the rain fell heavily on the decking. Iris carefully laid out some jewellery on tiptoes and Thula stood on her back legs to reach the bright necklaces and bracelets. I watched as her best friend played with the beads, batting them here and there, then she nudged some back to Iris. She looked up and as her hair moved away from her face I could see her smile. Both were enthralled by the colours and patterns being created between their fingers and paws: two souls understanding one another and enjoying spending time together after being apart. Thula’s huge wispy ears were focused, pointing forward, as were her long white whiskers, and her magnificent stripy tail was curved upwards, completely still. There wasn’t a big moment; the pair of them reunited quietly, rather like when they first met. It was beautiful to watch: it was such a simple relationship at first glance but it had so many intricate qualities.
It had been an incredible summer with Iris achieving more than I could have ever imagined, breaking through many stereotypes and preconceptions about her condition. My mind was busy again, thinking back to the highlights of the trip: the beauty of the church, speeding along on the bikes, Iris’s face as she watched the waves.
Boats, I thought, boats … A quiet relaxed space out on the water, another possibility to get Iris talking. A simple rowing boat would probably be best as it would be more stable and easier to bring Thula along. I could look into this further and find a suitable boat, a trailer so we could take the boat where we wanted to go, the best places to take it, life jackets … I could see it now: the four of us out on the water, Iris and Thula out at the front watching the waves, feeling the wind and chatting about what we could see. Making so many new discoveries.
What a fun adventure that would be …
Whisper, acrylic, June 2013
A-Where-Wa
Page 9
Anima
Page 21
Aquilo
Page 291
Arien
Page 79
Balasana
Blossom in the Wind
Page 198
Blue Grace
Blue Planet
Page 237
Blue Water
Bluebells
Page 177
Cinnibar
Page 188
Dance to the Oboe
Page 312
Early Morning Water
Equilibrium
Explosions of Colour
Page 165
Fable
Page 93
Follow the Fleet
Harvest Moon
Hiatus
Page 74
Immersion
Journey
Koi
Page 283
Kuendelea
Kumbengo
Page 253
Kupros
Page 66
Magic Flute
Page 298
Meadow Foxtail
Page 29
Monsoon
Page 119
Motion
Music at Sunrise
Page 51
Namazzi Blue
Page 147
Octavia
Page 265
Painting a Lullaby
Page 307
Paquita
Patience
Page 174
Rain Drops
Raining Cats
Page 217
Rolling Balls
Page 166
Row your Boat
Page 131
Sea Angel
Sea Whistle
Page 256
Separation
Page 142
Secret Seahorse
Page 171
Story
Page 345
Sunflakes
Page 60
Sunny Day
Page 162
Tale of the Waterbaby
Tempo
The Tale of the Green
Page 97
Thistledown
Page 104
Tiddle Tum
Tip-Toe
Page 112
Trumpet Painting
Page 336
Tuesdays Child
Page 42
Tumpty Tum
Page 15
Water Dance
Page 185
Waterfall Bounce
Page 329
Whisper
Page 363
Willow Grace
Zin Zin
Page 319
Acknowledgements
I would like to thank my family for being a constant support for not only Iris but for me too. Their love and generosity gave me the strength I needed in those dark times. P-Js ability to see the light, to believe that anything is possible and his adventurous spirit that carried mine when I was too tired. My midwife and Iriss therapists have also been an immense comfort to me while they shared their knowledge and helped Iris through many difficulties. To P-J and my friends who encouraged me to share Iriss talent with the world and then those who follow her journey, thank you. Your kind words and thoughts mean so much to me. A community has formed around our darling girl and we are not alone any more. I am so grateful to all of the musicians who have let us into their lives, sharing their beautiful music. To all of those who help me with the Little Explorers we are all very grateful, what fun we have had. Then, of course, there is Thula, I find it difficult to put down in words how much this cat means to our family. An extraordinary cat, nanny, bath-time buddy, biker cat, boating cat, artists assistant and best friend to Iris. She goes above and beyond, an inspiration to us all.
Thank you to everyone at the HHB agency, Celia and my editor Fenella Bates for your guidance and expertise. Thank you too to the book designer Alison O’Toole, the illustrator Alice Tait, Clare Parker, Hattie Adam-Smith, Aimie Price, Zoe Berville, Fiona Crosby, Bea McIntyre, Jennie Roman and Carol Anderson. I fee
l truly privileged to have worked with such an incredible team at Penguin Random House.
Iris Grace Page 24
