It is 2 years since I nervously sent my first unhoned musings out into the ether via the World Wide Web. Read Blank Blog Blindness here, where I talk about,
"a feeling of wanting to get something much more important,
very right from the onset.
Of wanting to create something that will lift spirits, give support, bring people together, raise a smile and encourage. Yet all the while providing practical tips and real solutions for the everyday lives of parents and educators who have a child with Down's Syndrome in their lives."
Motivation
Convinced no-one would read, I nicknamed it 'my little blogette', the sharing of our family life with 2 gorgeous daughters, one with Down's syndrome. My motivation was, and always has been, to buy precious early time for parents following a diagnosis. To show them that this path less travelled is never dull, that their lives will go on pretty much as before, and that with the right support their children will achieve great things. To dissolve and shine light on the kind of fear that consumed me in the early months after Natty's birth. An all-round Down syndrome support blog was my aim.
But what has my blog taught me? What have the unexpected lessons been? How has it changed my family? Where has it taken me, my values and thinking? And what has it achieved for others?
1 Blogging is time consuming
As the photos show, 'blogging' doesn't really describe what has become a full time unpaid job for me now. Speaking, writing, training, learning, meeting, talking. If you're thinking of starting a blog you might want to set strict limits for it from the outset. I probably spend 7 hours a day Mon-Fri on associated work, and I'm late for everything because I'm always trying to squeeze in one last call or email or Tweet.
Why do I do it? Why don't I say no when I'm asked to write an article for nothing that takes a week of my spare time? Why do I do an unplanned radio interview at 10 minutes notice which leaves me shaking with adrenaline all day?
Because when I discovered that people enjoy reading and listening, it made it all worthwhile. When one acquaintance said that before reading Downs Side Up she had felt sorry for our family and now she doesn't, I suddenly knew I was changing the perceptions of the wider public towards not just Down's syndrome but disability in general. When a new Mum wrote to me from her maternity ward bed having discovered us via Google, saying that the blog was the only thing giving her hope for her new baby with Trisomy 21, I knew I couldn't stop writing.
I'm still never prepared for the honest, open and heartfelt emails and comments that come my way, often anonymously:
"Your blog has keep me going the last 3 months,"
"thank you for showing us that there is light at the end of the tunnel",
"I hope I will one day be as positive as you are",
"I keep your newspaper articles in my kitchen drawer to boost me on the bad days",
"My friend had a termination but having read your blog she is going to try again and will not have testing this time."
A Typical Day
Wake up and drag self out of bed after 3 alarm bells
Shout 'shoes' and shovel breakfast in the girls while they create dinosaurs or similar
Do school run
Home and prepare dinner (usually chucking a stew in the slow cooker)
Check and replay to emails
Check and post on all social media sites: Twitter, Pinterest, Facebook, LinkdIn, Tumblr, Google+
Write an article for a magazine or journal
Turn down about 5 emails to do reviews
Pick the odd 1 relevant review
Plan my Special Needs Jungle and Britmums columns plus any guest editing I'm doing
Join in any live Twitter chats
Interview any guest bloggers
Chat to the latest documentary maker or journalist needing advice or a quote
Think about writing a blog post of my own.... time usually short for that.
Run out the door 5 mins late for school grabbing 'lunch' on the way
Do errands, docs appts etc
Homework, precious time with the girls, bed time and stories
Tidy up and the finish off the things that got started during the day (if I don't fall asleep before).
* I never let blogging encroach on family time, so after school and weekends are off limits.*
2 It's an emotional journey
I never for one minute expected blogging to be so all-consumingly emotional when I started. There are days where it gets too much and I have to step back, days of grief where a family I've got to know online have lost a baby, or of fear when I have had to go to the Police about a particularly nasty troll and the bigots voices surround us. A couple of days off usually brings the strength to continue shining a light into dark corners.
Then there are the times when I have been more nervous than I knew possible, frozen with fear over a live Skype BBC TV interview on a tricky subject or speaking to a room of MPs, adrenaline sending me to the smallest room in the house over and over. Then the moments of pride, reduced to tears because Natty has another modelling job or someone has noticed the reason for the long hours and nominated DSU for an award: Outstanding Contribution, Inspire, Woman of the year, Local Hero. And then the invite to Number 10.
None of it seems deserved and I am left humbled. And often crying but more determined than ever.
Yet, dear blog, I have grown a thicker skin, become wiser in so many ways.
3 Blogs have a life of their own
The work surrounding the blog has been organic. There is never a plan in mind, I just follow it's lead. Sometimes Natty's modelling or an award leads to a lot of media work. Likewise if something happens that demands attention I will write for change, e.g. getting a bigot removed from office for example, campaigning for a law change or calling for justice for someone wronged. Then I will be invited to do various events, such as speaking at conferences or Parliament. For this I research the subject matter in depth, such as the facts surrounding disability abortion law, sometimes there are facts I wish I hadn't read.
Other than that I watch my family and listen to my heart and thoughts in the quietest of moments and write about them.
Just as the direction a blog takes can change unexpectedly, the posts which are read the most is often surprising. It's never the posts that you favour as a writer, never the ones which are the most well-wrtten, but often the most controversial. I am however happy to say that my all time most popular post is the most useful. It's the one that I read at Britmums last year and made you all cry. What to Say When a Baby is Born with Down's syndrome.
4 Writing is unexpectedly cathartic, healing and educational
Writing and speaking about the complicated emotions that come with an unexpected diagnosis for our baby was intended to help other parents, to let them know that everyone adjusts in their own time and way and that a full range of feelings is entirely typical. What I didn't realise was that through that writing, you organise those jumbled thoughts until you reach a point where they all make sense even to yourself, but you will bring them to the fore again. I have spent many evenings crying over the pc, pouring my heart into a post. It's a hugely cathartic and healing process, like free therapy I suppose!
And by blogging those thoughts you enable friends and family to read them in privacy and at a time that suits them as well. You are able to explain in a way that you would never be able to face to face, and that helps them understand.
Alongside that, blogging is a learning curve. How do write this and pin that and post the other. And the research involved is like doing a degree!
5 There is so much online support
Above all of this I am thankful for the internet enabling the words of bloggers and charities and support groups and writers and forums and professionals and other parents to help others, but also to bring the support I need in to me at a moment's notice. I am grateful to be part of such a supportive online family, working together to change the world one attitude, one law, one person at a time. Thank you all. If you are reading this, it's you too.
I am eternally thankful for the friends I have made along the way be they parents of other children with Down's syndrome, wise parents of adults, professionals with Down's syndrome or bloggers who make me giggle when I need a change or give me technical advice when I am stumped. Online friends who lift me when I'm tired, authors and artists and playwrites and actors, even some lovely media folk who have remained constant advisors and friends (in between those who would sell their granny for a story). I always said Natty was a great ice-breaker, but our family has met so many wonderful others whose paths would never have crossed otherwise.
6 Not everyone will understand
I can think of one or two, no more fortunately, people in our local community who have barely spoken to me since the media coverage of Downs Side Up began. I wondered at first if they misunderstood my motives, thinking I was trying to be like Jordan and revel in the public eye. Then I wondered if jealousy was playing a part, but finally someone pointed out that blogs like mine hold up a mirror for others to see their own reflection in. And as we are bringing about a subtle change, they see this is a criticism of the way they were doing things before...
7 Blogging can be costly
Paid for every click you say? Ha! Is that one of those urban myths!?
I do get a lot of requests to write reviews, usually in exchange for a cheap plastic toy.
I say no of course.
Other writers ask if they can put a post about insurance on my blog.
I say no again.
I took adverts off the blog after a few weeks because it was distracting.
Now there is nothing wrong with blogging for payment, I just choose not to do it because I don't have time and I want the message of Downs Side Up to be clear. So yes, it costs me more than I earn. Software, domain name fees, hosting fees, train fares, blogging event tickets, accommodation, even postage.
Worth every penny though.
8 You have to do it naked
Not strictly true of course, but, spurred on by Kate on Thin Ice, getting naked to bring awareness of miscarriage, to encourage mums to celebrate their post-birth bodies and to forgive them for the losses while raising money for Down Syndrome Awareness Day was just one of the more curiously unexpected events of the year. Read Downs Side Up Uncovered here to find out more.
I wonder what the next year will bring?
I hope you'll pour balm on more hearts dear blog, open more eyes, make some real change, get our collective voices heard. I know you'll bring new friends, new inspiring plays or films or dance or books to watch and review. I will meet more adults with learning disabilities who will lead the way. We'll learn more tips and tricks to make life easier, often from medical or teaching professionals and we'll share them in the melting pot. Blog, you are now a hub, drawing inspiration to you like a powerful magnet. Thank you.
Oh, and who knows, maybe I'll find a sponsor!
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