LEADERSHIP: Blogging from the Heart: Downs Side Up

Categories: 

Attending last year’s glitzy UK Blog Awards event I felt inspired, excited to be amongst you all as a Health and Social Care finalist, yet a little lost and alone in a professional world where blogging means big business. I hovered nervously at the edge, clutching my glass of bubbles and daring tell no-one why I was there.

Apart from being old enough to be most attendee’s mother, I’ve always thought of myself as an accidental blogger, one with no idea about tech and very little interest in stats. My site has a welcoming, if homemade feel, and my words flow onto the page straight from the heart, rather than to fit an SEO template. I publish as and when I have something to say, when I know I should really track when my readers are most likely to engage and a refuse to monetise my blog on principle.

So what do I fill my pages with? Why did I start writing? Who reads my musings?

Well, just over 10 years ago our youngest daughter was born. A day that should have been one of the happiest in our lives, yet which turned out to be one of the most challenging. She was identified as having Down’s syndrome and a heart condition which was to later require surgery. I am ashamed to say that this unexpected news felled me completely, literally turned my life upside down. My ignorance got the better of me.

Outdated stereoptypes of what I thought the condition meant tumbled through my head as by body went into physical shock: We’d never travel again. People would stare. She might not go to school or learn to talk. She’d have a National Health haircut! She'd die young. She’d be musical and loving, but not much else…

Looking back the overly tragic way that we were told the news, amid sorries and tears from medics, shaped the way we felt. I can truthfully say that we were wrong on every single count. Our daughter Natty has very much proved us all wrong and our lives indeed turn out to be Downs Side Up.

Herein lies the motivation for my blog, which started as a place to buy precious bonding time for new parents by removing the fear, showing them how their families will shape in the future. I cannot go back and re-live that time knowing what I know now, but I can help midwives and doctors change their language, attitudes and support new parents differently. Down’s syndrome is not merely a list of medical symptoms, but a type of person and each person is different. Natty is certainly a wonderful, funny, unique person who has taught us so very much and who contributes enormously to our community, not the 'burden' we were led to believe she would be.

Over the years the blog has grown in following and attracts an international audience. It has become merely the hub from which other work has sprung, such as writing for medical journals, The Huffington Post, Firefly and Special Needs Jungle, speaking at medical conferences about our experiences, working as a tutor with student obstetricians at oxford Uni, attending events in Westminster to improve support for prospective and new parents as well as campaigning for equal healthcare for all. There’s been a documentary, lots of appearances on national TV and radio, a request to write on special needs travel in the Telegraph and even tea with the Queen.

What I didn’t anticipate was that blog writing would be cathartic and healing for me too. Many nights have been spent opening up my soul, tears plopping onto my keyboard. I have literally blogged through my emotions, my guilt, my fear, my acceptance and come out the other side.

Unexpected too have been the scrapes with trolls that the blog has drawn in, the times I’ve almost given up writing for good. But my online blog family have always had my back, and somehow the messages of thanks from around the world have persuaded me that the good our little site does, far outweighs those unlpasant moments that send me running for cover.

Today Downs Side Up is a mouthpiece for those with Down’s syndrome to share their experiences. It’s been described as educational, inspiring, gently campaigning. Our eldest daughter Mia helped write a book for children about having a sister with a learning disability called I love You Natty which has sold around the world and she’s been known to take to the mic at conferences too.

And Natty herself, well, she’s quite the little ambassador at only ten years old. She was the UK’s first model with a disability to appear in a supermarket Back to School campaign and she’s the star of our nightly Facebook Live broadcast quirkily entitled Chatty Natty. She has a following of tiny tots with Down’s syndrome who follow her lead in living life to the full. One day maybe she’ll have her own well-known blog and speak for herself.

Being nominated for shiny awards is very humbling and does make me incredibly proud of what our words can achieve, but the drive remains the same, to gently change perceptions of a much-misunderstood condition and to educate the world that everyone has worth and that we can all achieve if given support. And if my blog reaches just one person and gives them a different perspective on life, gives hope to a new Mum on a maternity ward in the early dark despairing hours, then that is its measure of success.

And, as I learnt throughout the evening at last year’s event, the blog world is actually full of really wonderful, supportive people, many of whom I have stayed in touch with. Our blogs may be as unique and varied as we are, our reasons for blogging poles apart, but what counts is that blogging makes our worlds collide so that we may learn from one another. We are all one part of the bigger picture and we all play a vital role.

You can follow us on Twitter or read our blog at www.downssideup.com