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So much to learn….from Seb

We have just returned from our summer holiday. It has been a lovely break for us all, no schedules to follow, days of simple pleasures – swimming, reading, playing cards, chatting, eating and relaxing. Whilst we undoubtedly were able to relax a lot, lot more […]

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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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