Thursday, 24 April 2014

Two boys, a book, a baby & a birthday

It's been a great week for me, and I haven't bumped down to earth yet! Firstly I'm a Grandma. Here's a picture of my baby boy with his very own baby boy, and every time I see them together I just nearly burst with pride.




Then it was Toby's 20th birthday, and he came home for 2 whole glorious days and nights and we threw a Birthday Party for him too. He moved into the lovely Residential Care Home across the road 8 weeks ago, and although we see him nearly every day, he has struggled with homesickness, and there have been some heartbreaking moments which have been really tough. 

About a month beforehand, someone told him he would be coming home and that it was his birthday soon. Ooops. Toby is the undisputed Birthday King of the Northern Hemisphere, but with his severe learning disabilities he simply cannot comprehend time and waiting. He got very stressed, and wanted to come home for his birthday every single minute of every single day for the whole next four weeks. His teacher at college was brilliant, she made a calender with little pictures of him in his new house on velcro, one for every day, like a non-Christmas Advent Calender. Then there were two pictures of  "Mummy's House" at the bottom of the calender, and he had to pull each picture off, one by one, every night at bedtime to help him understand the timescales involved.  

This helped enormously, but it was still a very long few weeks to keep him happy when all he wanted was "Presents", "Party", "Birthday", "Candles", "Cake". He doesn't have many words, he can't have a conversation, but when it comes to birthdays his vocabulary is as good as anyone else's! 


Here is a photo of a very happy Toby at our house on his birthday. Adam is holding onto him tightly so he didn't set his hair alight when blowing out the candles. You may also notice our family tradition - a cling-filmed cake. This ritual started many years ago, when Toby, who blows out candles so magnificently well and with such gutsy enthusiasm, would always cover the cake in so much saliva that no one would want to have a slice.

We were all rather concerned about how Toby would react about going back to his new home after his couple of days at home. The manager of his care home came up with a lovely idea - they would have another Birthday Party for him the minute he went back ....... smart move! 

Best of all, Toby seems to be in a completely different mindset now. He's been home to Mummy's House, he knows that he can come home again, he knows that everything is exactly in the same place just as he left it, and now that he's back in his new house, he's just somehow loads more settled and happy. So it's taken a while, and I can't be sure that we're definitely out of the woods entirely, but he seems to understand and be fine about his major life change. I can't tell you how proud I am of him too. His resilience, good humour and resourcefulness in coping with major changes puts most of the rest of us in the shade. 

Then, on top of Adam's news, and Toby's successful settling in, something else has happened that is like the icing on the cake with the cherry on the top for good measure.

The Special Parent's Handbook is available to pre-order on Amazon already! 

It's really exciting to see the book cover, my name and my very own Author's Page, there for the whole world to see on Amazon. It was hard to stop grinning for a day or so when I first saw it there, and my grin got even wider when I realised that it's selling really well already! 

If you want to see it there yourself, here's the link to the relevant Amazon page:

The Special Parent's Handbook - Amazon Page

So, who should read it? 

I've written it primarily for any parent whose child is different. Those differences may be disabilities, serious illnesses or a child who is a little bit quirky. All three of my children have disabilities, and one of them had a series of life-threatening illnesses. Along the way I've learnt so much, and I've basically written the book I wish someone had been able to give me all those years ago when I was struggling to cope and close to the edge.

 In the book I share the strategies that have helped me cope with the relentless 24/7 round the clock caring on very little sleep. I also share the coping mechanisms I eventually learnt to adopt so that I was no longer crushed and undermined by every professional at every meeting. These are the the very professionals and the endless number of mindless meetings that were supposedly there to help me manage, but which often, instead, just piled on intolerable extra stress and ate away at my confidence. I've written about how to tame and harness the never-ending related paperwork that goes with the territory of children with disabilites. Most of all, I put the children at the very centre of the book, because above all else it's all about them, and  how to make sure all your children have the happiest possible childhoods as well as how to get the very best services for all our children. 

I've had to learn the hard way about bringing up children with difficulties, and with no rule-book or guidelines to help me know what to do next and how to do it, I largely made it up as we went along. It was seldom easy, but we still had a lot of fun on the way through their childhoods. It was tough, and with the public spending cutbacks already having a severe impact on the vital support that families like ours rely on,  things can only get harder for this next generation of parents. It would be great if reading my book could take the pressure off and lighten the load even a little bit. 

I think you'd also enjoy it if you work with children with disabilities. I hope you'd learn a little too, and get a good insight as to how very bleak things can sometimes seem behind our closed doors, even when we are determined to put the brightest of faces on our circumstances. I've been very honest about how the services designed to help often simply don't join up, and how tiny little mindset changes could make all the difference. So often it's not about spending more money. It's often the smallest no-cost or low-cost little tweaks that can transform lives and make everything easier, but no one ever thinks of them, or thinks to ask those of us on the front-line for our thoughts and experiences. 

The book is also the story of my family and what's been thrown at us and how we've coped. I hope there are funny bits in the book, I find it so hard to be serious for too long, and sometimes the humour just creeps out onto the screen all by itself while I'm typing. 

A handful of people have already ready it, and the feedback has been incredibly encouraging. Rosa Monckton read it and has written an amazing Foreword in the book. Her writing is passionate and powerful, and Rosa goes so far as to call the book "A story of our Time". Rosa has been so encouraging and supportive throughout, and she simply couldn't have been kinder to me. 

There's still a load to do before the book is available to buy. I'm trying to get my head around setting up my own website following a step-by-step guide I bought on Kindle. I've somehow developed a completely pointless daily routine in trying to get the website up and running, whereby  I stare at the screen, stare at the Kindle, then stare at the Keyboard, then I repeat these three steps all over again, hoping against hope that something will happen. Nothing's happened yet except for another layer of confirmation that I'll never be a techie. 

Then there's the whole PR stuff to do, and Rosa has very kindly offered to help me out with that too. I'm a total beginner, but  I'm actually quite looking forward to this aspect of the whole thing. I've already got a few definite interviews in the bag and I haven't even sent out one press release yet never mind a review copy of the book itself. The review copies of the book itself should be here by the end of next week and then they need to be sent off to journalists and the like who may be interested in the book.

Somehow I have to make the website come together before I can move onto the PR side of things, so hopefully the penny will drop and I'll suddenly master the language of gobbledigook. 

Finally, it's setting up a Facebook Page especially to support the book, and making a really important decision.  Should I have a Book Launch Party, and if so where should it be? It would be loads of fun and a great way of saying thanks to all the people who have helped, but can I afford it and would it actually help to sell more copies of the book? 

So altogether a wonderful week, even though it's nearly that miserable "remember I've got incurable cancer" time, with a PET scan looming followed by those horrible few days when I convince myself they'll have found I've now got cancer everywhere. I successfully manage to tune out the whole cancer stuff most of the time, but the reality is that it's lurking there in the shadows of my very being, and one day it will decide to rear it's ugly head all over again and come out to play Russian Roulette with my life. I just hope it gives me time to write a whole stack of books before it starts taking me over. Fingers crossed.

PS Francesca wants the world to know that tomorrow is a mega day for her too. She is going to see McBusted at the O2 arena. Busted and McFly were her first loves, and 10 years ago, not only did we go to Wembley to see them when she was only 11, but we also met them for real when a neighbour managed to get us tickets for SMTV Live, the Saturday morning kids show. I was a grown-up woman, already well past my prime, but I went just as jelly-kneed and star-struck as any of the 11 year olds there watching with me. Tomorrow, Adam's going with her instead of me, because I'm just not well enough anymore to be a proper teenybopper, and anyway, I'm saving myself for The Osmonds in the summer.  I'm not sure Adam really knows what he's let himself in for, but I just hope they have a fabulous time out together. They certainly know all the words because they've been singing their hearts out to all the songs all the time I've been writing this! 

14 comments:

  1. dear Yvonne,

    oh, my goodness - so much excitement! and your new baby Grandson is positively adorable! congratulations to you and your entire family. I hope you can bundle all the joyful parts of what is happening - the new baby, Toby's incredible successes, Francesca's impending great adventure, the new book being out, et. al. and just hold onto them tightly. then let the have-to-do's stay put somewhere else - you'll get to them when you get to them, just as you always do!

    as for the looming Pet scan, just know you are not alone, and that you are surrounded by so much love and BIG, BIG hope - and lots of warm and comforting hugs.

    much love, light, laughter, and celebration,

    Karen xoxoxo

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    1. Thank you Karen. I really haven't stopped grinning from ear to ear for over a week! It's been such a happy few days, and this joy is preventing me from obsessing over the PET scan entirely. You are so lovely, always choosing such lovely and appropriate words of encouragement and support, and I hope you know how much it's appreciated. Here's to you Karen, that you may also be having some lovely things going on in your life this week too! Yvonne xxxx

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  2. Oh Yvonne, I am so happy to be reading this. Am so excited about your book and congratulations on becoming a grandma - I am sure the new baby will bring your family much joy. Hugs - Marie xxx

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    1. Thank you so much, Marie. Baby Kian is adorable (hope you like the Irish in his name!), but so many other lovely things have been happening so thick and fast that I haven't caught my breath yet, but it a very very good way! Hope all is great with you this week too, Marie. Yvonne xxx

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  3. Such a lovely blog post - new baby, Toby's birthday and great to hear that he is settling i his new home.n Not to mention the excitement of your new book. Comgratulations!

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    1. Thank you Bridget, wouldn't it be lovely if every week was just as much fun?! Toby is magnificent at the moment, and that has such a huge effect on my happiness-versus-stressed-out continuum, that just him being more settled on it's own would have me dancing with joy around my kitchen, never mind everything else! Hope you are having a magnificent week too. Yvonne xxx

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  4. Hi Yvonne, Many Congratulations on the birth of your new grandson Kian, (good Irish name:-)) He is a gorgeous baby and I know he will bring many blessings into your life. I'm delighted to hear Toby seems to be settling in, that was a really good touch to have a party for him in the care home, must have been very reassuring to you. Great news about your book, hope it flies out. As usual you astound me with all the things you have going on at the one time you really are quite a unique woman with an amazing ability to cope with many things together. Sending you positive vibes for your pet scan, hope all goes well x x Adrienne

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    1. Thank you Adrienne, thought you'd like our little lad's name! He is adorable, and Toby is just so content and calm suddenly, everything is sort of falling into place. You have no idea how much your lovely, warm and kind words mean to me, thank you. The pet scan is on the 6th May, so there will be time to fit in a wobble or two, no doubt before then! There's still so much to do before the book is properly launched though, I'll be kept very busy for the next few weeks. How are things with you? Please give my love to Dublin. Thank you again. Yvonne xxxx

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  5. Beautiful!! I would love to talk you about you posting for Cure Diva. email me ann.marie@curediva.com xo

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  6. Thank you Ann-Marie, I'll email you soon. x

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  7. All such good, good news. Congratualtions on your book, your new grandchild and birthday success. What a wonderful week. ~Catherine

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  8. Thank you so much, Catherine, it really was a magic week! Hope things are good with you too. Yvonne xxx

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