Ring out the old....

Hope everyone had a great Christmas! Elin sure did. Without wishing to cast the inevitable curse that comes with grandiose statements, I've got to say I think it was her best yet! Aside from a bug she was always bound to get, which thankfully disappeared well before Christmas, Elin has been the happiest, healthiest and most relaxed we've ever seen her. That is ALL we ever want for Christmas.

Its surprising, looking back through my posts, how many Christmases didn't work out so well for Elin. I have just realised that three years on the run we had a stint in hospital over Christmas and in other years, she was either coming down with a bug or getting over a bug on the big day itself. One Christmas Eve, a seizure landed her on Children's Ward. Another year she had to stay at home with me whilst Paul did our annual London Christmas visit because she was too ill to travel.

The reason this is surprising to me, is that I don't really remember them. They haven't stuck in my memory as you would presume they would have. As we enter a new decade, I thought it would be nice to reminisce about my ghosts of Christmas past before I sat down to write my Christmas blog post and the only imagery I could conjure up in my minds eye was joyful. I remembered Elin laughing at the wrapping paper on her presents, Christmas balloons, her school concerts, visits from family, cuddles with friends by the Christmas tree, outings to shows and concerts, meeting Father Christmas, I even remember her various gorgeous outfits over the years! But until I really, really focused and checked back through this online diary of mine, the bad times (of which there have been many it seems!) were strangely mute in my memory. 

This is going to sound as trite and glib as anything, but it has made me remember that truly, life and feelings and struggles and bad times are fluid, which is a reminder I really need sometimes.  I'm not trivialising these issues. I have been beyond miserable during these times. I still have really, really, hard moments and struggle to keep my anxieties and emotions in check, which I am not good at admitting or dealing with (but I'm working on that!) Sometimes,  I make lemonade from my lemons and sometimes the only thing I can do is chop them up and put them in a massive gin and tonic!! Unending positivity just isn't always possible.  However, when I look back on the important times of our life with Elin, like Christmas, I can STILL only really remember the good things. Despite the absolute agony of the bad times. I love the human brain for doing that, against all the odds and even when you are pre-disposed to overwhelming worry and anxiety,  it still tries its best to filter out the overwhelmingly painful stuff. Maybe it's partly our determination as a family to focus on the positive, although as I've said god knows that is not always possible, or maybe it's because we know that ultimately, as long as we have Elin happy and healthy and by our sides then the rest of the pain we experience will be muffled, if we can allow it to be.

I know this is not specific to us. I know that when it boils down to it, nobody really cares about presents or turkey or Christmas trees. All any of us want is our health and for the health of the people we love and to get to spend another Christmas with them. I am unbelievably lucky to have some utterly amazing friends and family surrounding me, none of whom I could navigate this journey without. On new Year's Eve this year I will be wishing for a healthy 2020 for everyone we know and love, everyone who cares so much about us and everyone we care so much for in return. It is after all the ONLY thing that will ever really matter. 

Happy New Year folks. Dina Caroll said it way better than I could:

"Ring out the old

Bring in the new

A midnight wish to share with you.

If you're with me, next year will be

The perfect year"

See you in 2020 everyone!!

Special

We're going to be in a book!!

I'll start at the very beginning (it's a very good place to start). A couple of years ago I received an email from an Australian journalist, Melanie Dimmit.  She explained that she was writing a book, which would collate stories of SEND parents to help new parents of children with learning and/or developmental difficulties. After her son Arlo was diagnosed with Quadriplegic Cerebral Palsy, she became acutely aware that there was no reading material out there around coping strategies and positive thinking for parents grappling with life-changing news. In a nutshell, Melanie said her book hoped to become something parents would turn to in order to feel better and access strategies (that have worked for other parents) to redirect negative thinking around their child's disability. She had, in googling the subject, come across my blog and was inviting me to contribute to the book with my own words of advice for new parents in my position. 

Wow. I was SO pleased! This has been a bugbear of mine for all time. When you are pregnant, there is a plethora of books you look at for after the baby is born. You buy a couple and excitedly put them on your bookshelf, maybe even in the baby's room. These will help you with ALL SORTS of things!! Things have moved on from the days of Dr Spock and they are even really trendy and funny now with advice about when you can start drinking red wine again and hilarious match stick pictures depicting frazzled life with a new born. These types of books are written by everything from well known celebrities to ordinary Mums with a way with words. They cover every topic from breast vs bottle to weaning, right up to potty training and everything in between.

These books, of course, were worse than useless to me when I got MY baby home. Not a word meant anything to me or our situation, they may as well have been written in Chinese. Social media groups were not a 'thing' then either. The internet was nowhere near, 11 years ago, what it is now in terms of the knowledge we have at our fingertips and the connections we can make. Neither could I turn to my other 'Mum friends' for advice. They weren't just in a different world to me they were orbiting a whole other universe.

So, I have often wondered why there couldn't be a book out there for parents like me. Not even necessarily new parents, as some children do not receive a diagnosis until they are older. Just any parent really who had the rug pulled from under them, who'd had their life turned upside down and with no idea what to do, how to feel or what to think. Melanie had obviously, after the birth of her son, thought the same. Being clearly much smarter and organised than me, she had actually managed to begin to put one together. I of course agreed to be interviewed by her, and then forgot about it completely. 

This weekend Melanie got back in touch. Her book which she has titled "Special: Antidotes to the obsessions that come with your child's disability" is going to be published by Venture Press in Australia and New Zealand in September, available on Amazon. She is hoping that following this, it will be published further afield. The blurb reads "Special is an uplifting, candid companion for parents in the early stages of navigating their child's disability. Combining more than 50 interviews with parents to children with wide-ranging disabilities and professional input from psychologists, researchers and specialists, it hopes to soothe and surprise very stressed and sad people"  So I am totally honoured to be included, albeit in a very small way :-) It represents a pleasing "full circle" moment for me. From those dark days when I had to angrily shove my 'baby books' into the shed because I could no longer look at them, (such was the way they seemed to almost mockingly represent a path I agonisingly never got to travel) right up to receiving Melanie's message this weekend and hoping that maybe my words could give some small comfort to another Mummy or Daddy throwing daggers at the bookshelf in the Nursery. What a circle we have followed, what a path we DID end up travelling. 

How special. 

Hope you've had a great weekend, folks.

Ruth xxx

For more information, follow @the_special_book on Instagram.