Today was a pretty typical day. Seb went to school and tag rugby afterwards. Nothing particularly stood out. He did the “sign” at drop off. One boy asked him if it was true that he had been to Stamford Bridge this weekend – checking with […]
All posts tagged: down’s syndrome
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 […]
SURVIVING THE SUMMER HOLIDAYS (when you have a child with additional needs)
I have to say, despite my initial dread and anxiety of the 6 long weeks stretching out ahead of us, we are enjoying our summer holidays. As usual, at the end of the term I stood in the playground listening to everyone’s exciting plans with […]
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 […]
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 […]
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 […]
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 […]
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 […]
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. […]
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. […]