The Special Parent's Handbook

Thanks to all the encouragement and support I've been getting recently, I've finally started writing my book, or should I say, my first book, because I really hope there's going to be time to write a load of them. Already I've pencilled together the bones of 12 different book titles, but then if no one likes my first one, who knows whether I'll be brave enough to impose the others onto an unsuspecting world. 

There are so many things I could write about, but the first one is going to be a little bit special for me, something I promised myself I'd write a very long time ago, when my son, Toby, was first born. I'm writing that book that I wish had already been written so that someone could have given it to me in those scary, lonely, bleak days when he was only ever one last breath away from being taken from us. 

Of course, in those early days, I had no idea that both Francesca and Adam would also be diagnosed with a whole host of disabilities, and how different our family life would inevitably become as a result of all three of them being not quite mainstream. 

Toby is so profoundly disabled that he is in a different league to my other two, and in a lot of ways I think that has done them some favours. If either of them had been helicoptered into another family where they were the only special need's child, I don't think they would have developed the resilience and resources that they have; Toby gave our whole family a very different perspective on degrees of disability. 

So far, I have three firm buyers for the book, but hopefully there may be a few more once it's finished. What I'd really like is that there may be some tips, tricks or strategies that I can pass on to parents still struggling at the early stages of realisation that all may not be quite right with their child. If even one family can learn from some of my mistakes, and find a way to short cut some of the wrong paths we took as a family, then I will be really happy. I think I somehow got quite a bit of it right along the way, too, though. 

Francesca and I had a bit of a laugh this evening, reminiscing over silly things that happened before she was old enough to go to school that are going into the book, but going over some of the memories has been quite difficult and has stirred up some of the long-buried sadnesses and ancient hurt, so it hasn't been a totally easy ride so far. 

Bringing up three disabled children is a bit unusual, and it's given me insight into a lot of things I never would otherwise have known. Once upon a time, in those innocent days when disability was something that only ever happened to other people's families, I didn't know a single person who had a disabled child. Now I hardly know anyone who doesn't. My "disabled mummies" are hilarious, we share a gallows humour that can make you laugh til your sides are hurting far too much. I couldn't get through without them. They also are always there, and understand in a way that others can struggle with, when things go horribly wrong. Sometimes things don't even go that horribly wrong, but you reach a new moment of a brick wall, and can't stop feeling low for days on end, and they're there with the Kleenex and cuppa just when you need it the most. 

Three of these lovely ladies are my "sounding board". As I write each chapter it gets emailed to Sian, Linda and Benedicte, who all look at it and tell me what should stay in, what should come out, what else needs to be said and how to make it better. One of the tips I've so far had back is "For goodness sake let them know that just because they have a disabled child they aren't ever going to be immune to other shit happening". 

Good point, it really does often seem that the bad-luck goblins are queuing around the block, laughing their heads off as they wait in turn to each lay a little bit more trouble at the door.  We might not be immune to trouble, but we do get fairly used to it and even calamities to happen. Having the kids I have has certainly been good training for dealing with breast cancer; I think I've somehow had to learn to deal with the unexpected, and take life as it comes.  

My secret hope is that the books lead to being asked to do more public speaking, in front of audiences where my experiences might actually help to change things for the better for parents like us. It would also be nice to do well enough to pass on a little bit of a nest egg to each of the children; heaven only knows they will have far more to deal with because of their disabilities, and there's a very good chance that I might not be around to help steer them way into adulthood either because this wretched breast cancer has decided to lay down roots in my spine.  A little bit of financial security would be lovely, and that's what's really keeping me going. 

I've just finished Chapter 7, with another 5 to go. Then there will be an introduction, a conclusion, and a huge rewriting of sections of the book before I publish. Something really annoying keeps happening. As soon as I've pressed "send" on the email to my three ladies, my head gets stuffed full of what I've left out and better ways to say what I've said already, and I convince myself that my efforts so far are rubbish. Even when they tell me they're not, I just think they're probably being nice. Last night I got two words back from one of them about Chapter 6, she simply wrote "It's lovely". That sent me to bed with a nice warm feeling, but I woke up again this morning with every insecurity that goes with this whole writing malarkey. All I can do is my best, which isn't always easy in my household. I went on a bit of a paddy this afternoon and told anyone who'd listen that they had to shut up and leave me alone..... some days I'm lucky if I get two and a half words written before the next interruption. 

Toby's in respite for a couple of days so I should be able to get my head down and concentrate, and they have promised to cook their own meals and do their own washing for the next 36 hours while I steam ahead. I'd like to get as far as Chapter 10 by Saturday morning, but I then have to squeeze in cancer treatment before collecting Toby at 2pm. The chemo room opens on Saturdays around Christmas time and they reschedule everything so no one has to go too long between treatments due to the Christmas and New Year bank holidays. 

Hey, did I really just type those two scary words, "Christmas Time"? When am I going to get time to squeeze in Christmas too?! My to-list, not even counting the book, is horribly long and scary too, so I need about 20 extra days added to every week at the moment. Crazy. Does any of it matter? Unfortunately yes. Better go and get some shuteye or the Chapter 8 tomorrow morning will be nonsense and I'll sound as drunk as a skunk on the four phonecalls I have to make from the list. It's nearly 3am already, and come what may, I have to be up at 7.30am.  Night night.