A wish for Santa

Nothing would stop my boy having his day...

Published by: Laura Hinton
Published on: 13 December 2012

L ying there in the darkness of my son's bedroom,
I pretended we were in another world, full of fairy stories and make believe.
Looking up, I watched the green stars from Nathan's glitter lamp sparkle across the ceiling as the fibre lights cast a magical golden glow.
Gazing across at Nathan, three, in his bed, I smiled. He was tucked into bed next to his favourite Winnie the Pooh teddy. ‘My handsome lad,' I whispered
Here, in his bedroom, we'd escape together. I'd created this fairytale world for my lad where nothing bad happened, and I'd keep him forever...
When Nathan was born, everyone fell in love with
him. ‘He'll break some hearts,' my mum Teresa cooed. He'd already stolen mine!
A single mum to Chloe, 11, Damien, six, and Dillon, four, they'd been so excited about their baby brother.
‘We can play footy,' gushed Damien. ‘He needs to learn to walk first,' I laughed.
Nathan passed all the early milestones. He'd just started crawling when Mum came round one day. He fell onto her lap.
‘You lazy thing,' she laughed, tickling Nathan's belly. ‘You weren't looking where you were going were you!'
‘He's always bumping into things,' I giggled.
‘You're not coordinated, but you'll be a little rocker one day!' I said, scooping him up, placing him in his bouncy chair, then putting on my rave music.
Within seconds, his giggle filled the room and he jumped up and down like he always did. Every day with him was an adventure.
Nathan was so nosy, eager to be everywhere. And it was usually the fridge! By the age of one, he always wanted more food.
‘Open wide,' I smiled, waving the spoon towards him as he sat in his highchair one day. ‘Mama,' he gurgled, happily.
But as I fed him the mashed carrots, I noticed he kept going cross-eyed. His eyes flickered funny, so I told our health visitor.
‘He might have cerebral palsy,' she said. ‘That would explain why he's so uncoordinated, too.'
Before he could be tested, I was cooking dinner a few nights later when our terrier Coco started barking.
Nathan was slumped forwards in his highchair, his eyes rolled backwards. Grabbing the phone, I dialled 999.
‘Please, Nathan,' I sobbed, hysterically, as I cradled him in my arms. ‘Wake up...'
Thirty seconds later, he gasped for breath. But at hospital, once Nathan was stabilised, a doctor pulled me aside.
‘Nathan suffered a seizure,' he said. ‘We're sending him for an MRI scan.'
It turned out Nathan did have cerebral palsy, but there was something else, too.
The doctor came by as I lay beside Nathan on his hospital bed.
‘He's got infantile Batten disease,' he told me.
‘It's an inherited disorder of the nervous system, caused by a faulty gene from both parents. I'm afraid there's no cure.' So this was our fault.
‘What does it mean?' I panicked.
‘The disease will affect Nathan's movement, vision and mental capabilities,' the doctor explained. ‘He won't grow properly, either. It's a degenerative disease that'll gradually shut down his body.'
Grief clamped tightly around my heart, I felt like the air was being squeezed out of me... That cruel question stuck in my throat, but I forced the words out.
‘How long?' I gulped. I clung to Nathan tighter. ‘It's unlikely he'll live beyond four,' the doctor replied. He was just 18 months, yet his life was suddenly slipping through my fingers like the sand in an hourglass. I ran out in tears.
‘He might not have very long,' I sobbed to Mum. ‘You have to be strong,' she cried with me.
That's when I decided that I was going to give him a lifetime of love in the time that we did have. I'd create a fairytale
world for my little boy, one where he'd never have to know the cruel hand that he'd been dealt. The challenge of making this world - his sensory room - meant I could focus on something other than the deep pain.
But it grew harder to escape the reality. Soon, Nathan needed oxygen and, one night, I sat on the bed and just watched him. Every one of his rasping breaths broke my heart.
I would've swapped places with him in a heartbeat. Instead, I lay behind him and curled myself into his little body.‘I'll always be with you,' I whispered.
Every minute with him was precious, so I barely slept. My waking moments were spent just taking in each freckle on his face, terrified I'd miss something. But I was even more scared of what I'd wake up to if I slept.
‘You're exhausted,' Mum fretted one day. I knew I was, but what were a few dark circles compared to what my baby was enduring?
Still, I didn't complain when Mum booked us a caravan holiday. Although Nathan was losing his sight, I tried to bring everything alive for him.
‘Can you hear the sea?' I asked, as I pushed him along the coast. ‘And that squawking noise... that's the seagulls.'
Nathan said nothing but, for a minute, I caught a glimpse of a smile on his face.
‘Yes, my darling,' I said, crouching beside him. ‘You know, don't you?'
We didn't know if he had a day, week or month left.
I wanted to slow time down but, before I knew it, Nathan turned three.
It was time to gently tell the children. ‘Nathan's an angel,' I explained one night. ‘He'll have to go back to heaven soon.'
‘Shall I pray for him like we do at school?' Chloe asked, her eyes brimming with tears.
‘That's a good idea,' I croaked. I was lucky to have them all but, for now, Nathan was my priority.
Halloween was a month away but, by now, I was terrified my boy wouldn't make tomorrow, let alone another whole four weeks.
‘So we're celebrating early,' I told the kids. I dressed Nathan in a stripy babygro and wings to turn him in a bumblebee. ‘I just wish you could fly away from all this,' I sighed.
‘Nathan looks great,' Chloe giggled. ‘Buzzzzzzzzz.'
Nathan couldn't speak now and started suffering seizures, but I just wanted him to have fun.
Later that day, though, rushing into the kitchen, I finally broke down on my sister Natalie.
‘I don't know how long Nathan will hold on for,'
I sobbed. ‘Even Christmas feels too far away.'
‘If only we could stop time,' she wept. And that's when it hit me. We'd brought Halloween forward... why not Christmas?
‘We could hold it in October,' I suggested. ‘It will be our final celebration...'
We were both silent as my words sunk in. I felt guilty for putting a time limit. But what was the point in hiding from reality, when I could make the time we did have together truly precious?
‘I know who can help,' I added.
Recently, the local paper had run a story about Nathan. Afterwards, a charity organiser called Les Hoey had got in touch offering assistance, so I took him up on it.
I was totally determined, even for one day, to give my son his fairytale ending.
Before that though, I wanted Nathan christened. Within weeks, I was dressing Nathan in a grey suit, a pink waistcoat and tie that I'd bought from the wedding section of Matalan.
‘Is Nathan getting married, Mummy?' Damien asked.
‘Not exactly,' I said. ‘But I suppose we could call it that...'
After all, my boy would never have a big day. Later, when we pulled up at Robin House Children's Hospice, where the christening was taking place, I smiled.
All our friends and family were there.
‘Thanks for coming,' I grinned, noticing the congratulations banners that'd been put up. It was a special moment watching Nathan being blessed.
When I got home, Les rang to fill me in on all the Christmas plans.
‘We'll pick you all up at 11am in a single decker play bus,' Les told me.
‘Santa will be making his appearance at the end of the day.'
‘Thanks for organising all this,' I said, looking across at Nathan in his buggy. He was so pale, so weak. I hoped and prayed that he'd hold on for this.
Somehow, he did. Just four days later, on October 10, Christmas arrived early.
‘Is everyone excited to see Santa?' I asked my kids as they put their coats on.
‘Yes!' they cheered.
Soon, we'd bundled onto the bus. Next stop was Coltness Community Centre, a 10-minute drive away.
‘Why is Christmas early this year?' Dillon asked, confused.
‘Santa's taking a little break from wrapping presents,'
I explained. ‘He's come especially for you guys and Nathan. I thought you all deserved a treat.'
Do They Know It's Christmas? suddenly piped through the bus speakers and the kids started jiggling about. I saw that Nathan was half asleep in his pushchair.
‘I can see a grin on his face,' I smiled to Natalie.
When we arrived, the whole street had been lit up with fairy lights. Hopping off, the kids' feet crunched as they ran across the fake snow.
Then carol singers and elves welcomed us inside... it was absolutely amazing. The whole place was decked out with tinsel and there was a huge tree in the corner.
‘Merry Christmas everyone!' I laughed, totally swept up in the moment.
Before too long, reindeer arrived, along with Iggle Piggle from In the Night Garden, Nathan's favourite show. ‘Where's our special guest?' Iggle Piggle asked.
I pointed excitedly at Nathan.
‘There he is!' laughed Iggle Piggle, as he marched over.
Soon, he was fussing over Nathan like everybody else.
He was the star of the party.
‘Mum!' Damien squealed suddenly. ‘Look over there!'
Simon Ramsden, who played for the boys' favourite team Motherwell FC made a surprise appearance. Damien was now running around like a lunatic, showing everyone the football he'd just had signed.
‘That's lovely, sweetheart,' I smiled.
‘There's someone famous here for you,' I told Nathan.
Simon was crouched beside him posing with a team shirt. Despite the sadness behind the day, I was so touched.
‘So many people love you, darling,' I whispered to Nathan, as I pulled his party hat from over his eyes.
Soon, we were all tucking into our turkey dinner. Turning, I looked at Nathan. Bless him, he'd nodded off and his hat had slid over his eyes again. I just wished that I could bottle up this moment forever. Soon, the person all the kids were waiting for arrived - in a fire engine!
‘Ho, ho, ho!' Santa bellowed, hopping off. Then he started dishing out presents to all the cheering youngsters one by one. ‘Nathan,' I whispered, a little choked up. ‘Santa's here for you!' For a moment, the light behind his eyes returned. And for that second, I realised I'd given my little lad the Christmas he was never meant to have. ‘Thank you so much,' I said to Les before we left.
Now, another month has passed. Nathan's condition has deteriorated and he has to be fed through a tube.
He's permanently on oxygen and it's likely we're facing the last few weeks of his life. Mummy couldn't create a miracle, but one thing's for sure, I gave my boy a Christmas he'd never forget - the fairytale ending he deserved.

• Sadly, Nathan passed away on November 22, and our sincere condolences go out to Sarah and the rest of his family. Sarah asked us to still go ahead and publish her story as a tribute to her young son's life.


Sarah Watson, 28, Wishaw, Lanarkshire