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Memories for tinkerbell

We're trying to make each day with Catlin special...


Published by: Polly Taylor and Charlotte Dalton
Published on: 11th October 2010

Knives and forks were clattering, my daughter Caitlin, five, was squirting ketchup all over the tablecloth, and her sister Chloe, 10, was sticking her fingers into a mountain of creamy mashed potato.
Dinner time in our household was always a lively occasion, and today was no different!
As I placed steaming hot platefuls of Caitlin’s favourite fish fingers on the table, her big blue eyes lit up like beacons.
‘Nemo! Nemo!’ she squealed at the top of her voice, tucking in.
She’d seen the Disney film Finding Nemo so many times she used the main character’s name to describe all fish – even fish fingers!
Caitlin loved all things Disney – in fact, as she tucked into her tea, the glittery wings of her Tinkerbell costume were flapping away on her back.
Jungle Book, the Little Mermaid, Snow White – she adored them all, and my hubby Ben and me had treated her to all the DVDs.
It might sound like we were spoiling her but, for Caitlin, dancing along to Under the Sea or Hi-Ho was one of the only joys left in her life.
Six months ago, she’d been diagnosed with Sanfilippo syndrome, a condition that would damage her organs. Slowly, her body would shut down. She’d then develop learning difficulties, and lose her ability to walk and talk.
‘I’m afraid it’s a life-limiting condition,’ her doctor had told me. ‘Most children with it only live until about 14.’
Even now, I still couldn’t get my head around it. She wouldn’t see her sweet 16th, let alone make it to old age.
Now, as I tucked her into bed beside her Mickey Mouse cuddly toy, I couldn’t help thinking about all the things my baby would miss out on.
She’d never marry, never get to tuck her own child in at night…
It pained me so much to think I couldn’t protect my baby from the thing that was going to cut her life short. But, as I walked back downstairs, I realised something. I might not be able to save her, but I could do more to help her enjoy the precious time she had left.
Why should her only joy be watching her favourite characters on screen? ‘I want to take Caitlin to Disney World, Florida,’ I told my hubby Ben, 33, flopping down on the sofa beside him. ‘She deserves to have fun.’
‘I know,’ he sighed. ‘But how are we ever going to afford to go there?’
He had a point. Ever since Caitlin’s diagnosis, money had been tight. I’d had to quit my job as a bank clerk to become her full-time carer.
‘We’ll manage,’ I said. And we did, scraping together every penny we had to pay for the trip.
Later that year, as Caitlin watched the fireworks display at the Magic Kingdom, she’d never looked happier, and I knew our struggle to find the money had been worth it.
As she jumped up and down, fairy wings flapping on her back, her eyes were glued to the night sky.
‘Tinkerbell!’ she squealed, as her favourite character appeared, soaring through the darkness on hidden wires.
Fireworks shot up all around the Disney Princess Castle and, as Caitlin clapped along, pigtails swinging, I couldn’t believe her energy.
It was moments like this it was hard to believe there was anything wrong.
We had such a wonderful time. But, in a flash, the holiday was over. ‘Is that it?’ I thought back at home. ‘Is that the only bit of excitement she gets?’
Suddenly, life seemed short. Days passed in a blur. There was so much we wanted to do as a family, but had never got around to. So many holidays and trips we’d discussed, but never taken.
Now my precious girl was running out of time, and I didn’t want her to miss out on any of it.
‘I want to fulfil all of Caitlin’s dreams,’ I told Ben. ‘A two-week holiday doesn’t seem like enough.’
‘She really deserves to live as much of her life as possible,’ he agreed. ‘But we can’t afford another holiday.’
This time, I knew he was right. We’d cleared out our savings account to pay for the first trip.
‘We’ll sell the house,’ I blurted. ‘Move somewhere smaller.’
‘Are you sure?’ he asked.
He knew how much I loved the house, how many happy memories we had there. Family meals around the table, snuggling up on the sofa with popcorn for a Disney movie-marathon, the girls enjoying playing with their pet rabbit Socks in the garden…
But all of that was in the past. If we sold the house, we could give our little princess a future.
Memories from the past, or memories for the future? The decision wasn’t hard to make.‘I’m sure,’ I told Ben.
He wanted every penny for Caitlin as much as I did. So we sold up and rented a smaller house on the other side of Birmingham.
After we moved, we set up the website www.caitlinsdream.com listing all the things we wanted for her. Who knew how long we had together? I wanted to cram in as many memories as possible.
Caitlin was still obsessed with Disney, so another trip there was top of our list. But we also wanted to take her on safari in Africa so she could see the hippos, take her on lots of day trips, and create a sensory bedroom for her, full of light, sound, and touchy-feely objects.
The bedroom might not have been as fun as meeting Mickey Mouse – but as Ben and me were painfully aware, the older Caitlin became, the less she’d be able to move. She’d need somewhere she could be comfortable.
Donations flooded in and we were able to take a second trip to Disney. We also took Caitlin to a safari park and Drayton Manor theme park, Staffordshire.
‘Choo, choo,’ she grinned, as she rode the Thomas the Tank Engine mini-rollercoaster, holding her sister’s hand.
Watching their smiles, I felt a stabbing pain. I knew in maybe just months, Caitlin’s condition would stop her speech altogether. By then, Chloe would probably be nattering away about boys, clothes and make-up. It didn’t seem fair…
I try not to think about the future too much, though. It’s too painful. For now, everything I do is focused on making Caitlin’s life the best it can be. To cope, I take each day as it comes.
Ben and me are now busy trying to raise more funds for the next trip for her.
We’d love to take Caitlin back to Disney for a third time, and visit Father Christmas in Lapland. Right now, though, we’re busy creating her special bedroom.
I’ll do whatever it takes to fulfil her dreams, and I don’t care how much it costs. The memories we’re creating are priceless.

Emma Powell, 32, West Heath, Birmingham