I think part of it is because the book is supposed to be a "How to" guide at bringing up disabled children, which is very much my specialist knowledge since that's roughly about all I've been doing for the past couple of decades, but it still feels quite bold and big-headed to shout out to the world I'm an expert. I haven't got it all right by any means, in fact there are days when I haven't got anything right altogether, and my kids are utterly gorgeous, engaging, funny, well-rounded young people, but they, just like their mum, are all a long way from perfect.
Quite frankly, nor would I want them to be. How boringly conventional and predictable life would be then, hey? But if people are kind enough to buy and read this book when it's published, won't they be expecting me to be some kind of Superwoman with "Peter Perfect" kids? Hell, no. I really hope not.
Then there have been other dilemmas. If this book is bought for a young couple who have just been told their newborn baby has lifelong disabilities, I want it to be able to support them and make them feel it's doable and OK. So half the time I'm not putting in anything that might terrify the living daylights out of them, like what it's really like dealing with Healthcare, Social Services and Education. Then if I don't it's selling short all the parents who might be at that stage and simply banging their head against a wall desperate for some ideas as to how to go into those meetings, retain their dignity, say their piece, be heard properly, and come out of the meeting knowing that some good will come out of all that stress. I had a bit of a wake-up call along these lines this week, when two mothers asked for my help about how best to deal with social services. They are not my stories to tell, but if I tell you I was pacing up and down in a fury and they aren't even about my own kids, I think you can imagine just how awful a service they are being offered, or more to the point, not even being offered.
Then there's the whole isssue of is this a book to tell people how to access services, how to keep your sanity, how to deal with the constant, relentless demands of your child and how to still manage to bring up happy, delightful children? Or is it a chance to tell my story? Well it's supposed to be the first, but using my own experiences to illustrate various points. However, once I start telling our family story, at times I've been guilty of running away with myself, getting completely stuck into it, and producing pages of what can sometimes only be described as a stream-of-consciousness rant. Hey ho again. I need a little sign up at the top of the laptop stating "Shut up, Yvonne, this isn't about you".
The stories of our trials and tribulations are valid, and stories are a rich part of our culture and actually help people learn and remember stuff, so I'm not talking about taking them out altogether, however, there have been moments when they have become so big and so ranty that they are risking squashing the whole purpose of the book.
The other problem is that so far, the book hasn't even made me laugh very much. It's all a bit dark and a bit heavy, which just won't do.
However, the night before last I actually had a chat about all these things with WM and Francesca. They really ganged up and bullied me back into action, but in a very nice, kind, good way. Francesca just said, "oh for goodness sake, Mum, this is only a first draft, you can't worry about the style or substance at all, and it's certainly far too early to even think of editing it yet". Then Malcolm added "Just write and write and write, you can re-work all sorts of bits and pieces, and you keep saying it's rubbish, but the bits you've let me read so far are fantastic!".
They are really good at this whole thing, the pair of them, so I'm very lucky. They really made me think, and also come to terms with the fact that over the past 20 years or so, I've been running on empty for a lot of the time, turning myself inside out to find more resources I didn't even know were lurking deeply buried within me. Of course, the first time I've ever revisited some of that is going to make me emotional, and there have been some really negative emotions I've had to deal with since I started this project 4 weeks or so ago. Guilt, anger, fear, abandonment, isolation, frustration... to name but a few. So of course they've spilled onto the pages too. It's probably been incredibly theraputic and cathartic, and when I go to edit, I just know the funny side of everything will also be peeping out from between the lines and it will all be great in the end.
In the middle of all of this, I got some really wonderful, very exciting news. There is a very high-profile, lovely person who has agreed to write the Foreword for the book. I did several hours of dancing around the kitchen very badly with my creaky bones, and I was certainly far too excited to write a word for the rest of the day. Maybe that's what precipitated the crisis of confidence a little bit too - if I could tell you who this person was you'd understand how now I'm really putting myself under pressure because the stakes have been upped quite significantly, and the book is now much more likely to be noticed and taken seriously because this person's reputation will really increase my credibility. So failure is simply not an option and mediocrity just won't do. This book, unlike me and the kids, needs to be as perfect as possible.
Wouldn't it be great if this book could help parents to understand their limitations better than I was able to, and put strategies in place to take care of themselves years before I ever managed. Wouldn't it be great if they don't get Breast Cancer because they knew not to run themselves into the ground far quicker and far harder than was ever good for me. I'm pretty convinced that God, or Mother Nature, or the Universe or whatever you want to call it, handed me a life-threatening illness to make absolutely damned well sure I slowed down and stopped. Like that really worked... not. I know my time is likely to be shorter than I'd have liked it to be, so I'm trying to get everything done at a 100 miles an hour, including this book. Typing it so fast I don't have time to worry about anything else.
So far I've written about 102 and a half paperback pages, and that's about two-thirds of the way through. Some of it will. of course, need to be rewritten, and humour has to be shoved in all over the place too.
Tomorrow I'm off for a publishing meeting, all very exciting, so tonight my printer has to work to print everything I've so far done. I've also got to scribble out my book objectives, an action plan, a sketch of a marketing plan, and a list of questions to write. I've also promised Francesca we'll sit down and watch some telly, and WM has just phoned too, he's promised to bring us in a takeaway tonight.
Lovely jubbly, I'd better push on.
PS. In the book I may decide to include some useful contacts and website addresses. Which ones would you recommend? Please let me know. Thank you.
|Francesca, Adam and I with a random lady in the background.|