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WHAT DO YOU SEE?

A few years ago, a headline run by The Independent completely took me aback. It made my heart stop and I felt confused. The paper ran with “M&S to feature disabled boy Seb White in their TV Ad” Disabled?? DISABLED boy?? Whaaat? The headline made […]

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PROUDEST MUM ON EARTH…

I have officially burst. Here is the examiner’s report on Seb’s reading at the Midsomerset Festival. “Thank you so much for sharing your reading with us today.  What a clever boy!  We could hear every word and you are to be congratulated on your performance. […]

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WHAT A DAY! MIND BLOWN….

A few weeks ago we had a letter home from school about the Midsomerset festival. It is a speech, drama, music and singing festival open to all schools in the local area. There are set syllabuses for each category and age. As I so often […]

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A beam of light…

The last few posts I have written and shared have been somewhat hopeless. I have been feeling an anxiety I have never known before. Defeatist too. The testing has hit us all – not the testing itself, when you really think about it it’s no […]

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More than a feeling….

My heart is broken right now. We’ve known about the #NIPT testing for ages and my life hasn’t changed at all. I still have my own family unit that I wouldn’t change for anything, the world is still turning and it doesn’t actually affect me […]

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The no biggie biggie

I’ve seen Seb’s face / photo in some pretty awesome places over the last few years. But this one is by far the best. This isn’t the front page of a broadsheet, or a packet of chocolate. This isn’t the reception of a high street […]

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Debilitating Journalism

What does the word “debilitating” conjure up to you? To me, it is a profoundly frail and sick person, unable to do pretty much anything. In my minds eye I imagine someone lying on the floor, or in a bed, desperate for help, pale in […]

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Testing Times….

Woken feeling really blue. I am fighting a wobbly lip, I have an upset tummy and my heart feels heavy. It’s a feeling similar to when we were given seb’s diagnosis. I want to scoop him in my arms and run away somewhere. Somewhere safe. […]

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BALANCE….

So often we talk about “balance”. “I am pro-choice, as long as decisions are based on “balanced” information”. Giving the WHOLE picture. Except, more often than not, us parents of children with Downs syndrome really just want to counter balance the harsh scientific and medical […]

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