Fighting for our lives
I’m just waiting for that life-saving phone call...
With nerves jangling, I wandered into my local boozer to greet my date.
It was December 2010 and a friend had set me up with Becky, 25, a teacher.
‘You’ll like her,’ my mate’s words echoed in my mind.
Walking through the pub door, my stomach flipped.
Becky was beautiful, with blonde hair and a huge smile. ‘I’m James,’ I told her. As we chatted, it felt like we’d known each other for ages, and I was soon smitten.
As time passed, we grew closer…
But there was something I hadn’t told Becky…
I was born with cystic fibrosis, or CF – an incurable condition where the lungs clog up with sticky mucus.
While I’d had a relatively normal childhood, towards the end of my teens, life slowed down.
I was hospitalised more and more – a simple cold would develop into a chest infection and see me rushed to yet another ward.
Eventually, my lung function had dipped to between 26 and 34 per cent.
I’d made peace with the fact that I might not have a long life, but how would Becky react?
‘I’ve something to tell you,’ I began nervously, six weeks after our first date. I paused, silence in the air. Then, it all tumbled out… ‘I’ll understand if you want to end things,’ I told her. ‘Of course I don’t!’ she said. We went from strength to strength and decided to start a family, but my condition affects my fertility.
As medics said we only had a 16 per cent chance of conceiving with IVF, we didn’t think it’d work – but…
‘Come here!’ Becky called one day from the bathroom.
Popping my head around the door, I saw a pregnancy test – a positive one!
We had more joy to come…
‘It’s twins,’ a nurse said at the eight-week scan.
And, nine months later, Isobel and Logan arrived. Seven weeks after, in July 2014, Becky and I were married at Leeford Place in Battle, East Sussex.
It was the best day of my life. Even knowing that, ‘Until death do us part’ may be sooner for us.
Our family complete, things were blissful.
Over time, my health got worse and I had to give up work.
Being home meant more time with the kids, which was great, but it was a reminder that the CF was progressive.
So, late last year, I met
I’d made peace with the fact that I might not live long…
up with some experts to discuss a lung transplant.
Words like ‘rejection’ leapt out, sparking a pang of dread.
The idea of suddenly getting called away, not getting to say goodbye to my family without knowing when – or if – I’d see them again, was terrifying. But the alternative..?
Fading further until, within a couple of years, I’d be gone. ‘I’ve got to do it!’ I said. While a transplant wasn’t a cure, it would give me hope.
Hope for a future, for a chance to love Becky and the children a little longer.
This January, I joined the waiting list for new lungs. What if the call never comes? I tried not to think about it, but as I watched the twins play
one day, I couldn’t stop myself.
Will they remember me if I die? Will they know how much I love them?
‘I’m thinking of making a video so they can see and hear me when I’m gone,’ I told Becky.
‘It’s a beautiful idea,’ she said.
So, one spring afternoon, I propped up my phone in the kitchen and set it to ‘Record’. And then, I talked… I talked about everything from how Isobel and Logan came to be in the world, to some of the adventures that we’d experienced together.
Walking around the house, I showed them the spot where I’d sit and read them stories, where they’d taken their first steps and said their first words.
When I’d finished, I picked a few clips and uploaded them to Facebook.
I’d been working a lot with the organ-donation charity Live Life, Give Life, and figured maybe I could help inspire people to sign up.
I wasn’t expecting a huge response from the post, but within minutes, my phone began to ping. You’re an inspiration, said one person. I’m signing up, said another. So many lovely comments. I’d made the video for my kids, but it was great to know that I’d made a difference. My future is still uncertain. The phone could go at any minute, changing everything.
While I wait, though, I’m making the most of every day.
I’m lucky enough to have two gorgeous children and a beautiful wife.
Yes, I may have CF – but it doesn’t have me.
I wanted my twins to see and hear me when I’d gone…