Developing ICT skills and networks of support.
That was the week that was…
Posted: 7th Nov 2012
That was the week that was…Exhausting. Amazing. Unexpected. Emotional. Unbelievable.
Now that the madness has settled, I can sit and reflect (and finally enjoy) the craziest ten days of my life.
I am utterly exhausted. Mainly from being on my best behaviour, receiving scores of media requests and calls from excited friends, thinking of what to say, what to wear, and relentlessly tidying the house and welcoming new people into our lives.
I have always known that if people could see our lives, see Seb, they would realise that Down’s syndrome is not the big deal they thought it was. This notion was prominent even in the days when I was still coming to terms with it. I knew that if I could carry on regardless and not make a fuss, it would impact positively on those who met us. This is one of the main reasons I took Seb to Waterbabies, to baby sensory, to Soccatots and a whole host of other things. If I am being honest though, it started off as a pride thing - not a conscious attempt to change attitudes.
It was just over a year ago that I had an idea to write about my experience and then post it on my Facebook account for my friends to read, to see how far we had come and how ‘normal’ our lives were. It was a very honest account and I didn’t want to make my friends feel uncomfortable or embarrassed. Down’s Syndrome Awareness Week arrived. I sat nervously at my computer. I very nearly didn’t post it. Would the people I went to school with want to read this? I doubted it. I doubted me.
The daredevil in me overrode my brain and recklessly pressed the ‘post’ button. I remember having palpitations and was on the verge of a panic attack thinking, ‘if nothing happens I will feel like such an idiot’. This was it. Me on a plate, laid bare (metaphorically speaking, thankfully!). The response was instant. The messages had me welling up. Everyone loved my honesty and I loved that. I felt relief. Out and proud.
I thought if those people who had loved my honesty could see our ‘normal’ every day lives then they would learn a little more. I would make it light-hearted, a window into our lives – posting amusing things that had happened with the occasional serious note. The last thing I wanted to be was worthy, or cheesy, or soft focus.
Seb came up trumps, providing all the material I needed, particularly during potty training (pardon the pun) - by smuggling trains into his pants and dropping them into the potty and demanding chocolate button rewards. Not to mention the time I gave him a round of applause and he stood up off the potty and took a bow.
Later on that year I was invited to talk at the DSA’s Tell It Right, Start It Right midwives conference in Yeovil. It was a huge honour. I am really passionate about this campaign, which aims to give both pre-natal and post-natal diagnoses in a more positive, more informed way. It was here that I learnt about the Jojo Maman Bebe involvement in the Workfit scheme and prompted me to contact them about Seb modelling.
He did the modelling, we had a small amount of coverage but I would lie awake at night frustrated, thinking it wasn’t enough. I needed a bigger audience to see Seb, to see how cute he was, how ‘normal’ he was. As reported in the press, I contacted several major retailers’ head offices. Nothing, aside from a few fob-offs. I knew my emails were landing in generic inboxes and not getting to the right person. I tried production companies and, whilst helpful, they pointed me to modelling agencies. ARGHHHH. This wasn’t about Seb being a model, as such, it was about an idea, a message, an original campaign and I really had faith that someone, somewhere, would grasp it and have the confidence to do it.
We carried on with our lives, excitedly preparing for Seb’s first ever days at school. When we were shopping for a school uniform in M&S, the back to school leaflets in store marketing ignited a spark.
Facebook has evolved so much - every day we are bombarded with other people’s ‘likes’ and ‘shares’ and ‘comments’. I started to think that actually Facebook was the perfect forum. It was a massive risk, one that I knew could make me look stupid. I felt really uncomfortable doing it as I knew my friends would all see my post. I posted a warning on my status just before I did it... and then, I DID IT.
I posted on M&S’s Facebook page. The second I did it, I felt really stupid. Uncomfortable. Awkward.
I carried on with some work on the computer. Slowly, but surely, the responses started coming in. I wouldn’t quite say a snowball but a very gentle ripple. By the time I went to bed, the momentum had built a little more. I barely slept that night. My phone was going bonkers all through the night. It was a real adrenaline rush. People believed in the idea. I still could never have imagined what was to follow. The call. The invite to the shoot. The front page of The Times.
So there are two sliding doors moments within the last two years that so very nearly didn’t happen. Two posts on Facebook. Two posts on Facebook that have undoubtedly shaped my life a little more than I ever could have believed.
Seb on TV!