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. […]
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 […]
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 […]
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 […]
Film Night…..
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” […]
Seb has made me cry today. Twice.
Seb has made me cry today. Twice. The first time was this morning at school drop off. What should, in theory, now be an easy thing has turned into a bit of a headache as Seb is very reluctant to go into his class knowing […]
My “little” Brother
My “little” brother…. After a fabulous and, dare i say it, easy start back to school last week we seem to have hit a few challenges in our second week with Seb. By contrast his little brother has breezed in and out with complete ease. […]
What the teachers told me about Dominic reduced me to tears
Here is a little piece I was invited to write for Scope as a tribute you to all the amazing siblings out there. HAPPY NATIONAL SIBLINGS DAY!
A Date with Fate
A DATE WITH FATE It seems an awfully long time ago now that I had Seb, my first baby. Up until that point, I had led a pretty easy life with fair few challenges. I have been quite honest about how much of a shock […]
Force of Nature 