Downs Side Up produces its first support book

Mia and Pippin dream up a new title for her first book

Just over 7 years ago I sat in front my computer screen in the late evening whist expressing milk with an industrial pump that would service a herd of cows, and I Googled 'Down's syndrome' for the very first time. 

Our new baby girl lay in a Neo-natal Intensive Care incubator, where I had left her in the loving hands of nurses for the night after sitting by her side for the last 10 hours, as I did every day. Each night I dashed home and played at 'usual routine' with our firstborn Mia; cooking dinner, playing, doing puzzles, reading stories. How could she, at 2 years old, understand why Mummy and Daddy were spending long stretches of time at the hospital? why Grandma was shipped in to help look after her? why her new baby sibling was not at home? why Mummy and Daddy looked so very very worried?

The results of these first Google searches revealed factual help and support from charities such as the DSA and I spent hours poring over their sites, desperate to know how life would be for our precious daughter. They also revealed depressingly outdated information, falsehoods and prejudice. On balance they were not happy hours.

I sought something that would help us explain those difficult questions to Mia at a time when we were just learning too. I uncovered a few trusty titles, that we still read to this day; Paint the Octopus Red, I Can, Can You?, My Brother has Down Syndrome, and my sanity saver for parents A Minor Adjustment.

The children's books were either a touch dated or written in American English (nothing wrong with that but it was a little confusing for Mia), so I vowed there and then, to one day create something parents could enjoy together with their children, something that would educate, support and become a vehicle for family discussion. I vowed too that I would write, and write to make a difference, which is how the blog itself began. I am glad today when new parents Google Down's syndrome they often stumble on Downs Side Up alongside those charities and outdated nonsense. Their grateful emails that our heartfelt words throw them a lifeline give me the daily motivation I need to keep going.

2 years ago Mia began leaving little notes for her sister here and there, by her bed, in a jotter, in a homemade card. I collected the seeds of words, slowly, without an idea of where or how they would grow.

Gradually things took shape and Mia suggested images to go with her words. We filled any gaps and drew the stems together. Nervously I showed a few friends and family. I was persuaded that we had a something that would help many. But still I sat on the project for 6 months, partly busy with the usual speaking and writing and charity work and training and blogging and having a family, and partly because launching a first book needed research, time... and guts.

4 months ago we submitted the text to dear friends who would work on the look of the piece, and finally this week, amid my frenzied preparations for World Down Syndrome day, writing guest articles for this charity or that, fundraising, helping stage Disability Rocks festival in Cornwall, the odd media interview and an MRI scan, we saw the first of a couple of proofs. 

Mia bounced and beamed with pride, seeing her words of love for her beloved sister in print and I was filled with hope. The vision was being realised after all these years.

The obvious initial title 'My Little Sister Natalia', was suggested by Mia herself, after all it is a phrase she uses daily as an older sibling. The name was instantly changed within minutes of the similarity to  the name of the unique films by young Agi Productions being pointed out, and this was confirmed in a personal email to her Mum. The new title (shown being worked on by Mia above) has nothing to do with 'sisters' or being 'little' (although we still haven't quite finalised it yet). Apologies to Agi, who I have always supported and spread the word far and wide about in my columns.  I look forward to her future projects. 
Thank goodness for initial proofs, I say! 

(What a shame none of my fellow bloggers or writers or charity workers who had glanced over the book initially spotted the overlap of the phrase that is common parlance, for any repetition certainly did not cross my mind at all. And double shame that it wasn't brought to my attention in a personal email rather than angrily on a public forum, thus being easily and privately resolved in minutes, but such is the peril of modern online life, and proof that one must check one's accounts every minute of every day, even when it's family time.)

Nonetheless, with the upset behind us, I look forward to announcing the launch of our not-for-profits book. I thank each and every one of you, for those who have written of your support in the last few days, parents and siblings and bloggers and charity workers, those who have put in many hours to make this happen, those who dedicate their free time to creating lasting change for our children through whatever medium. 

To all of #TeamT21 we raise a glass of squash or bubbles. 

Mia, I am so very proud of you and what you have achieved at 9 years of age. I hope this book will sit alongside many other inspiring titles for children by a wide variety of authors in years to come, and I hope it will bring the focus back onto siblings at what can be a difficult transitional time. 


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