Just sharing a link to my new book, which is due to launch soon and available for pre-order. It is only a little book, published by Ivy Press, but I hope sincerely that it will help new parents dealing with a recent diagnosis to see […]
All posts filed under: creative

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 […]

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. […]

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 […]

The only book I ever needed to read…..
Forget the leaflets and the text books. My goodness, how I wish someone had been able to give me THIS to read the day we were given Seb’s diagnosis!!!! This is the ONE and only thing I needed to read about in those early days. […]

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. […]

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 […]

AND THE STARS LOOK VERY DIFFERENT TODAY….
The passing of British pop icon David Bowie has shocked and impacted just about every adult I know. His death was seemingly out of nowhere, even though those closest to him obviously knew it was coming, and it just felt like David Bowie was someone […]

WHAT AM I?
This afternoon whilst we were serving up dinner we improvised with a game of “guess what I am?” which basically involved doing an impression of something for everyone to guess. We had a pig, an elephant, a monkey and a police car amongst other things. […]

WAIT WAIT GRANDMA
We have just had a very emotional visit to Seb’s great grandma. At 99 (and a half!), we are never sure how we will find her and her health has markedly deteriorated in the last year. This year is the first year she will […]

MY FERAL HEART – “A FILM ABOUT ABILITY, NOT DISABILITY”, by DUNCAN PAVELING
Whilst I am not an advocate of the line “everything happens for a reason” I certainly believe that everything thrown at us shapes, moulds and influences who we are – and there is no doubt that life guides us down certain paths and chance meetings […]

“MY FERAL HEART” – Tiny Teaser (and ketchup for breakfast)
We have a running joke in our house that if Seb *could* have ketchup for breakfast, he would. Well, today he did….and chips….. This morning we had the absolute pleasure of meeting writer and filmmaker Duncan Pavelling, in my home town in Essex. A chance […]