Make every day count

I'm making precious memories for my family

Published by: Jemma Gillard and Ann Cusack
Published on: 2 August 2012

I was soaking wet from the water rapids, and my head was spinning from whizzing around in a giant teacup on the Mad Tea Party ride.
We'd eaten so many burgers, I wouldn't have been surprised if we'd turned into one!
But I didn't care. We were on the holiday of a lifetime at Walt Disney World in Florida.
As my kids waved madly at me from Splash Mountain, I almost managed to forget everything. Almost.
‘I could stay here forever,' I whispered to my husband Pete, 47. He gave me a sad smile. He knew why. Then I wouldn't have to face reality again. Face the fact that I was dying...
You see, this holiday was the last one we'd have as a family. It was a time to create cherished memories. I didn't know how many more times I'd hear the sound of my children's laughter.
The nightmare had started a year earlier, when I'd woken up with pins and needles in my hand.
I must have slept on it funny, I'd thought.
But even in the shower, the numbness didn't disappear.
‘I'm sure it's nothing to worry about,' Pete had said.
‘That's how it all started for Dad, though,' I'd whispered.
My dad had died when I was just 13 from motor neurone disease (MND), a group of neurological disorders that affected the muscles in his body.
Over the next three years, I'd had to watch this vicious disease destroy his body bit by bit. By the end, he couldn't walk or talk.
I'd been heartbroken when he'd died. Then,
a couple of years later, a doctor had warned me. ‘You know, it could be hereditary. You should get tested,' she'd urged.
‘No, I'd rather not know,' I'd cried. Deep down, I'd felt that if I didn't think about it, then it couldn't happen. I'd been wrong.
As the weeks went by, the
pins and needles spread to my legs and my co-ordination started to deteriorate.
‘You look like you're drunk,' Pete had frowned, as I'd staggered to the bathroom.
So I'd finally decided to find out the truth. I was sent for a whirlwind of MRI scans and blood tests.
Pete had been with me when I'd gone to my GP for the results. He'd held my hand so tightly.
‘It is motor neurone disease,' the doctor had explained. ‘I'm so sorry.' Why me? I'd thought.
As we'd walked out of the surgery, I'd looked into Pete's
eyes, tears were streaming down his face. They were the eyes I'd been looking into since I was 18.
We'd met through mutual friends, and loved Sunday afternoons in the pub or cuddling up to watch one of his favourite horror films.
When I'd fallen pregnant soon after we'd moved in together, we'd both been over the moon. Before we knew it, we'd had seven gorgeous kids!
‘I just have to hold your hand and you fall pregnant,' Pete would joke.
Although we didn't have much money and it was hard work, I'd never once wished for anything different.
Returning home from the doctor's, we'd opened the door and the sounds of my kids had hit me. Our five boys were watching football on TV. With them all supporting different teams, I'd normally end up being the referee!
‘Come on, Liverpool!' Alex, 17, would shout.
‘Nah, Leeds all the way!' Andrew, 19, would cheer.
‘Oh God,' I'd cried, falling into Pete's arms. ‘I can't leave them.'
I don't know how long we'd stood there, but I'd realised that all those simple moments - like listening to Andrew's girlfriend problems, watching TV with Dom, 11, or braiding 13-year-old Megan's blonde hair - were so precious now.
We'd decided not to tell them straight away, but they'd guessed something was up.
‘Is everything okay, Mum?' Shaunna, 20, had asked.
‘You'd better sit down, love,' I'd whispered.
It'd broken me watching her devastated face. After that, we'd told the rest of the kids.
Andrew and Alex were in denial, and my youngest, Josh, just didn't understand.
‘I'm so angry that I'll miss so much,' I'd sob to Pete at night.
It should've been me taking Josh, 10, to his first day at secondary school, and helping 14-year-old Mathew revise for his exams.
I was also scared that all the responsibility would fall on Shaunna. She was mum to Skye, two, and didn't need that burden, too. But, somehow, we'd managed not to let it control our lives, and I'd carried on my job as a nursery assistant.
‘Oh, Christine, I'm so sorry,' my manager Michaela, 48, had cried, when I told her the news. ‘We're just trying to make as many happy memories for the kids,' I'd sighed. ‘We're going to try to take them to Florida.'
Me and Pete had always dreamt of a family holiday there, and we'd planned on saving up over the next couple of years. Time I now didn't have.
‘Why don't you put the deposit down and we'll raise the rest?' Michaela suggested.
‘You can't do that!' I gasped.
‘We want to,' she smiled.
So, my friends started a huge fundraising campaign. In five months, they'd raised £10,500.
I was overwhelmed.
It was how we'd ended up on this trip of a lifetime.
We got back home six weeks ago. I now need a wheelchair to get around. It will be tough for me and my family, but I hope when the time comes, they will find the strength to cope.
But the scariest thing is that I could've passed this on to my children. I feel like a family curse. You can't be tested until you're 18 and, so far, Shaunna's the only one who's gone for it
We're waiting for the results at the moment, but again we're trying not to let it loom over us. Time is too precious. Forever wouldn't be long enough with my kids. I definitely don't have that - I just have to make sure every day counts.
Christine Cook, 39, Oldham