Sam and Chester

by Jo Bailey

CHAPTER TWENTY-ONE

  Wedding Bells and Pig Tales

  I WANTED TO have Chester at our wedding. He was part of the family; it seemed only right that he be there. I imagined how cute he would look with a bow tie around his neck or a daisy chain on his head . . .

  Then I remembered the house-warming disaster when he stole food from our guests’ plates and peeled the wallpaper off the bathroom wall.

  Darren, quite sensibly, was quick to point out all the other things that could potentially go wrong if I let our pig loose at the civil ceremony and reception we’d planned at a country house hotel in the nearby village of Gulsworthy. We’d agreed on a winter wedding because of the magical memories of our white Christmas when Darren had proposed. It was going to be a low-key occasion – only thirty-odd guests. But even I could see that Chester could not be among them. No: I was going to have to dream up another way to include him.

  ‘I’ve got it!’ I exclaimed as Darren and I were wedding-planning one day. ‘Let’s have Chester on our wedding cake!’ Darren warmed to that idea and a plan was set in motion.

  The next thing I knew, I was taking a photo of Chester to the bakery in Dartmouth that we’d chosen to make our wedding cake. They probably thought I was crazy for asking to include a pig in the design! I leafed through their brochure and spotted one particular cake design that summed up our topsy-turvy life perfectly. It showed the bride and groom lying on a four-poster bed with all their pets around them. I asked if they could make a pig out of icing, instead of the cats and dogs that were shown in the picture, and stick him at the end of the bed.

  ‘Just leave it with us,’ they said, trying to suppress their smiles at our peculiar pet.

  Will was going to be best man and Sam would give me away. It was Darren’s and my way of including the boys in our special day. We wanted it to be a celebration of how far we had come as a family.

  Sam only had a few words to say in his role but it was going to be a massive deal for him to stand up and speak in front of all the guests. I knew he’d rise to the occasion, though, thanks to the confidence he’d gained in recent years. I’m sure it would have helped Sam to have Chester close by his side but I’d just have to remind him he was there in spirit – on the cake.

  Sam wasn’t the only one I spent time prepping before the wedding. I also warned the registrar that I had a son with autism who would be speaking during the ceremony to give me away. I wanted to know exactly what was going to be read out so I could run through the ceremony word for word with Sam beforehand. I didn’t want there to be any nasty surprises that could upset him.

  The big day finally arrived on 19 December 2011. You’d have thought I’d have been calm considering it was my second time around, but I found myself fretting over the tiniest details, such as the flower arrangements, the seating plan and the children’s entertainment. I wanted everything to be perfect, right down to the little silver Christmas crackers that were our wedding favours and the italic handwriting on the place settings.

  It was my best friend from school, Penny, who helped calm my pre-wedding nerves. As the boys got ready with Darren, she appeared in my hotel room with a bottle of champagne. Penny, who’d flown over from France with her two sons especially for our wedding, was a larger-than-life character. She looked like Cate Blanchett with her cropped blonde hair and toned physique. It was a real treat to have her there and even though we rarely saw each other, we fell back into our old friendship within seconds.

  ‘Now, I’m going to ask you what my father asked me on my wedding day,’ she said jokingly, filling my glass with bubbly. She paused for dramatic effect. ‘Are you absolutely sure you want to do this?’

  We both burst out into a fit of laughter.

  ‘Yes, I’m sure!’ I declared, still chuckling.

  ‘Well, let’s get on with business then,’ she said, dialling room service and ordering me a cooked breakfast. ‘You can’t get married on an empty stomach!’

  Penny helped me to slip into my ivory dress when the time came. I’d chosen a much less fussy wedding dress this time around; it was a simple halterneck. A team of pros did my hair and make-up, curling my long red tresses into ringlets and then letting them hang loose down my back. The finishing touch was the very pretty bouquet I carried, which was made up of heather from Dartmoor, pine cones, white roses, pussy willow and mistletoe – because it was Christmas – all threaded together with silver ribbon.

  That was the colour theme of our wedding: silver and cream. I’d picked out silver bow ties and waistcoats for the boys to wear and as they came bounding into my room with their cousins Tom and Dan, just before the service, my heart leapt to see how wonderful they looked.

  ‘Don’t you all look handsome!’ I exclaimed, straightening their bow ties in turn.

  ‘Don’t you start crying,’ Penny warned me, conscious that any sentimental tears might mess up my carefully applied make-up.

  She then ushered everyone out – everyone except Sam, because he was going to walk me down the aisle.

  Sam, who would be eight in less than a month’s time, stared up at me with wide eyes.

  ‘Mummy, you look nice,’ he said, stressing each word as he sometimes did. It was so sweet.

  Our little moment was interrupted by a sharp knock at the door. The hotel owner popped her head around and said, ‘Everyone’s waiting for you now.’

  A hundred butterflies fluttered through my stomach. This was it – I was about to marry Darren. I imagined everyone seated downstairs in the drawing room; Darren and Will would be waiting at the end of the aisle for us to appear.

  ‘Come on, Sam, let’s do this.’ I took his little hand in mine.

  Today, he was my rock, giving me strength and support. Both my father and my uncle had passed away and I needed Sam to be there for me. Our roles were reversed – I was leaning on him, rather than the other way around, for he was the man supporting me to the altar. And my little boy rose to the big occasion magnificently.

  The photographer was waiting at the bottom of the stairs to capture us on camera. She teased me about how anxious I looked, but it wasn’t because I was afraid of marrying Darren – I could barely get down the stairs in my high heels as I was used to just wearing wellies! I gripped Sam’s hand for dear life as I tottered from step to step. We made it to the bottom in one piece and both peered around the door of the drawing room at the same time. I could see Darren, nervously smoothing down his black velvet jacket with his hand. Will was also there, holding the cream leather bag containing the rings, and I spotted my mum in the front row.

  Then the bagpipes started playing – a sound very close to Darren’s heart. A lot of his colleagues on the rig were Scottish and they played the bagpipes as they walked around the helideck; he would often tell me on the phone how listening to the sound of the bagpipes drifting across the rig and out to sea gave him goose bumps, so he’d wanted the stirring instrument to provide the soundtrack to our ceremony. Listening to the haunting music, I could understand exactly why he found the pipes so moving.

  I was still holding Sam’s hand as we pushed open the double doors into the drawing room. The first thing to hit us was the scent of flowers: the room was filled with them. Then we felt everyone’s eyes on us.

  ‘You’re doing so well, Sam,’ I whispered.

  As we walked down the aisle, Sam started to suck on his forefinger nervously, and his eyes were fixed on the ground. The guests were craning their necks so that they could get a glimpse of us. Sam’s nervousness was palpable – I was so proud of him for managing to stay calm.

  Darren couldn’t resist looking back at me. A smile crept across his face.

  ‘You look beautiful,’ he mouthed.

  A blush rushed up my neck and spread across my cheeks. Sam was still sucking his finger as we came to a halt before the registrar. My eyes were darting between Sam and Darren.

  ‘Well done, Sam,’ I murmured.

  As soon as the service started, my son stopped sucking his finge
r and gazed up at the registrar, eager to say his lines at exactly the right time. The registrar cleared his throat as he prepared for the big moment.

  ‘And who gives Joanna away?’ His voice boomed across the room.

  The registrar looked down at Sam, trying his best to make my son feel important. Sam gazed back up at him with his beautiful angelic face. And everyone fell silent as they watched and waited for Sam to speak. It was so quiet you could have heard a pin drop.

  ‘I do,’ Sam said proudly.

  A smile spread across the room from face to face, the pure joy impossible to resist. All our guests knew what a big deal it would have been for Sam to speak in front of everyone – yet he had done it.

  I looked at Darren; both our faces reflected the same pride and love. Suddenly, it felt as though it was just the four of us – me, Darren, Sam and Will – alone in the drawing room. Everyone else seemed to fade into the background. For while it was just Darren and me up there saying our vows, the occasion signified a bigger union: the four of us coming together to be a proper family. As Darren and I exchanged our vows, the words weren’t just about our love for each other, but our love for our children too.

  The rest of the day went like a dream. The food was amazing, the atmosphere was incredible . . . I could not have wished for a more perfect wedding.

  We’d done our best to include the children in the celebrations throughout the day. I’d wrapped up a load of presents for them in silver tissue paper and put them under the Christmas tree for them to open once the reception got going. As I stood chatting to my mum that evening, as the band played loudly in the background, out of the corner of my eye I could see the children tearing their gifts open. We’d given Sam some Lego, a toy he adores due to the ordered step-by-step construction, which appeals to his autistic brain.

  As I kept half an eye on the boys, I saw Sam putting together his Lego toy. There was one piece left to go: the crowning glory. His cousin Tom, who was sitting close by, innocently leaned over and stuck the last Lego brick on to Sam’s toy.

  ‘Here you go, Sam,’ he said cheerily, happy to be able to help.

  Completing the toy meant nothing to my nephew – but it meant everything to Sam. The last piece of Lego going on meant the toy would be complete and perfect, and it was very important to Sam that he was the one to do it. Having Tom finish it off caused Sam huge frustration and this, coupled with the noise from the band, proved too much for him to cope with. It sent him over the edge.

  Sam suddenly took to his heels and sprinted out of the room, crying. From my experience, I knew this meltdown could be serious and my first instinct was to keep Sam safe. I gathered up my wedding dress, kicked off my heels and chased after him. I ran up the sweeping staircase, along the corridor and into the library.

  Smack! Smack! Smack! Sam was hitting himself in the face. He was crying his eyes out, his little body heaving with sobs.

  ‘Sam, stop,’ I pleaded. Within a matter of minutes, my role had changed from that of the bride to being the mother of an autistic boy who needed my help.

  I tried to give him proprioceptive input by throwing my arms around him, locking him into a cuddle. Proprioception is the concept of knowing where your body is in space and the ability to safely manoeuvre around your environment. By hugging Sam, I was attempting to bring him back to himself, so that he knew who and where he was and wasn’t lost in his raging emotions.

  The cuddle wasn’t enough to calm him this time, though: he was too far gone and his mind was now in a state I considered to be dangerous to his wellbeing. He was fighting me, smacking himself, digging his nails in . . . I wasn’t strong enough to hold him and he escaped from my grip. He was so distressed that I was incredibly concerned he might hurt himself.

  ‘Sam!’ I pleaded, as he took off down the hallway again.

  I sprinted after him, my heart pounding so loudly I could hear it in my ears. The music I’d been enjoying only moments earlier downstairs was now loud and intrusive. I wanted it to stop. I wanted Sam to stop.

  He darted into our bedroom. Come on, Jo, I told myself, you have to think on your feet. As I wracked my brains for ideas to help Sam, I realised there was no alternative – I was going to have to apply more pressure than a simple cuddle could do.

  I lay down next to him, using part of my body weight to apply deep pressure to his muscles, locking him in tight, essentially keeping him still and safe. I didn’t lie on him completely, but I held him in a firm embrace to apply pressure and comfort. The music continued to pump through the ceiling and in my mind I willed it to stop, conscious that to Sam’s sensitive ears it would have been an added overload to an already highly stressful situation.

  ‘It’s OK, Sam.’ I tried to console him.

  After about twenty minutes of me applying pressure to Sam’s muscles, stroking his hair and covering his ears with the palms of my hands to block out the noise of the band, the door burst open and Penny appeared. Her face dropped with shock at the sight of us.

  ‘It’s OK,’ I blurted, my voice muffled because my face was pressing into the sheets. She crept over to the bed, wanting to help but not really knowing how.

  ‘I had no idea,’ she said, referring to how unpredictable and out of hand things could quickly get when you had a child with autism.

  But unless you live with it, you can’t really know. Sam’s meltdown was a reminder that, no matter how well he seemed to be progressing, his autism will always be a part of who he is. These kinds of episodes are inevitable if he becomes overwhelmed.

  Luckily, slowly, the weight of my body on his nervous system worked. He stopped fighting me and I gently eased myself away from him. His breathing was deep and laboured as I stroked his hair and cuddled his exhausted body.

  ‘Go downstairs, I’ll look after him,’ Penny said insistently.

  ‘I can’t leave him.’

  Penny wouldn’t take no for an answer, though. Eventually, I gave in. By the time I finally slipped away, Sam was fast asleep in Penny’s arms.

  I pasted on a smile as I made my way downstairs because I didn’t want to let on to my guests that anything was wrong. Inside I was crying, though. I was, after all, partly responsible for causing Sam to have his meltdown. It had been an incredibly busy and different day for Sam and, as much as I had tried to prepare him for what was going to happen, it had all been too much. I always hated seeing him in distress, but this time it felt worse than ever. This time, I felt guilty.

  As I rejoined the party, Darren was quick to come to my side. He had noticed my long absence and my mum had told him I was with Sam. He came towards me with such a look of concern on his face, and I knew he had been as worried for Sam as he had been about me.

  Seeing my new husband – dressed in his wedding attire, on this day when our family had become whole at last – was all I needed to feel my spirits start to rise a little again. Being Sam’s parent was challenging, there was no denying it, but what had happened on this day – Darren and I becoming husband and wife – meant that I wasn’t alone any more. Whatever the challenges of parenting Sam, Darren and I were a team and we would do it together now, whatever the future held for us all.

  And not just the two of us. As Darren took me in his arms to twirl me around the dance floor on our wedding night, a very special pig looked on from his prime location atop our wedding cake. Though tonight had been a step back for Sam, Chester had helped him to make so many huge leaps forward – and I knew he would do so again in the future. It wasn’t just Darren who had my back and Sam’s back, Chester was there for us as well. In sickness and in health . . .

  So while Sam’s meltdown had been distressing, as the evening wore on I focused not on what he hadn’t been able to manage that night, but on what he might manage in the years to come. For all of us – all us Bailey-Merritts, as we were now named – today was the first day of the rest of our lives. And I was excited to see what the future had in store.

  CHAPTER TWENTY-TWO

  Media
Hog

  NOT LONG AFTER Sam’s episode at the wedding, he bounced back in a way that surprised us all. Darren and I went to pick him up from school one afternoon, and instead of coming out alone (he no longer needed Lynda Russell or a TA to hold his hand these days so he normally exited on his own), he ran to the gates with another boy in tow.

  ‘This is Jack,’ he said, proudly introducing his new friend.

  We couldn’t believe it; Sam had finally made a friend. I had honestly thought that this day would never come. It just showed how far my son had come: Sam had progressed from coming out of the school with Lynda or a TA, to leaving by himself, to now appearing with a friend.

  While it was a landmark moment for my new husband and me, Sam and Jack seemed oblivious to what was going on around them. They were in their own happy little bubble, laughing constantly.

  I looked at Darren with delight and he grinned back at me.

  ‘Nice to meet you, Jack,’ we both said.

  Jack wasn’t in the CAIRB but he did have special needs. That might have been what brought the boys together – an unspoken understanding that they were both a little different from the other children. They had met in one of the mainstream classes that Sam had been integrated into. They both shared a love of drawing: Jack would ask Sam to draw superheroes for him, which he did, and Jack would then enjoy colouring them in. From that moment on, Sam and Jack were inseparable.

  Lynda Russell was gushing with stories of how they did everything together. One story that touched my heart more deeply than the others was how Lynda had once caught them chatting on the fallen oak tree in the playground.

  ‘They were blind to all the other children playing around them – they just chatted and laughed until we had to drag them back to class,’ she said, looking incredibly moved.

  I couldn’t help having a flashback to when I had helped out at Manor Primary and looked out of the window to see my boy all alone, running up and down the tree and flapping his hands, so isolated from the other children. Now he was sitting on that very same tree with a friend. What’s more, he’d made this connection all by himself. He hadn’t needed Chester to help him communicate. It showed how much he was improving and it made me think that maybe one day Sam might be able to fend for himself.