For my darling wife, Lisa, and my wonderful children, Mattie, Amy and Ellie: with you beside me, I know anything is possible
Thanks also to my brothers, Mark and Gary, and my sister, Nicola: your love and support means everything to me
Finally, dear Mum and Dad: thanks for everything
‘All men dream, but not equally. Those who dream by night in the dusty recesses of their minds, wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act on their dreams with open eyes, to make them possible.’
T. E. LAWRENCE
CONTENTS
Just like any parent, I want the best for my children. I want them to feel safe, to be confident and to grow up with the understanding that life is to be challenged: to be explored and enjoyed, no matter what obstacles you might have to face. My wife and I have three great children and I am very proud of them. The two eldest, Matthew (15) and Amy (13), have grown up with responsibilities that most of their peers have never experienced. I am in a wheelchair, and being a wheelchair-using dad limits me from doing some of the things that other dads do, like football and cycling – activities that other parents take for granted. But their understanding of the issues I face makes the relationship I have with my children what it is: close, loving and, most of all, fun. They are growing up to be caring and thoughtful individuals with an empathy that belies their ages.
Ten years ago my wife, Lisa, gave birth to our youngest daughter, Eleanor. She has been diagnosed with the same condition that I have: Charcot-Marie-Tooth disease (CMT) or peroneal muscular atrophy, also known as hereditary motor and sensory neuropathy. What this means in practical terms is that there is wastage of the muscles in the lower part of the limbs. I can no longer walk and my hand strength is very weak, limiting my dexterity. Ellie is walking still but her gait – the way she walks – is affected. In 2010 she had to undergo surgery on her legs to try to straighten her ankles, as her tendons were pulling her feet inwards. The disability can affect people in many different ways.
Both my wife and I want to see Ellie enjoy life just as much as her older siblings and we are aware that she will face problems as she grows up, but what we want her to understand is that those problems can be overcome. In my life I have done many crazy and wonderful things that many people thought were beyond my capabilities: water-skiing, off-road 4x4, go-karting, gliding, diving – the list goes on. I even played drums in a band in the 1980s, reaching the dizzy heights of playing the Hippodrome at Leicester Square. Up until 2010 I was competing in the National Drag Racing Championships in a powerful Ford Mustang race car. I’ve never let anything stop me from realizing my dreams, so I want Ellie to know that her capabilities are to be explored. And it’s not just that there’s nothing wrong with ‘having a go’, either. It’s that you’ll never know what you can do till you try.
Then, one day, not so long ago, something else struck me: that there’s a saying – or, more correctly, an idiom – that we all know, which goes ‘actions speak louder than words’. And as soon as it occurred to me, that was it; I was away. I wouldn’t just tell her. I would show her.
Nigel Holland, December 2012
‘Dad,’ Ellie says to me, ‘you’re mad.’
‘Well, you knew that already,’ I say, grinning at the look of incomprehension on her face as she works her way down the piece of paper in her hand. It is a list. A list of all the crazy things I plan to do over the coming months. I can tell they’re crazy just by looking at the expression on her face.
‘Yeah, I know, Dad,’ she says, ‘but this is a big list. How