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. […]
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 […]
New Non-Invasive Testing for Down’s – Channel 4, October 2015
I was invited to appear on Channel 4 to speak about the potential implications of the new testing for Down’s. It was massively last minute and I arrived, straight from work and school pick up, at the train station with the clothes I had been […]
He’s Not a List of Characteristics….He’s My Son – Guardian October 2015
We were delighted to be involved in this wonderful piece written by journalist Olivia Kaye. It is wonderfully balanced and true to our words. Thank you Olivia and The Guardian and the other advocates involved. The full piece is here: http://www.theguardian.com/society/2015/oct/17/living-with-downs-syndrome-hes-not-list-characteristics
Seb, I’m sorry………
The Timehop / Memories apps are a nice touch. I’ve been on FB a long time and it often chucks up pictures and memories I had long forgotten, or even deleted. Photos and conversations from the past that often make me smile. But one just […]
Every year our school PTA puts on a film night. The kids put on their pyjamas, bring a teddy and a pillow, and turn up after school to watch a film and eat treats with their friends. It is a really sweet and special evening […]
TESTING FOR DOWN’S – WHY DO I EVEN CARE?
Unless you have been living in a cave with no wifi access for the last few years, you will have heard all about the new prenatal testing for Down’s syndrome. Hailed as a modern medical miracle, the fact it is non-invasive ultimately means less “healthy” […]