happy

Not dead yet

My late father in law was a great one for a saying. From the “see you at the lights” hurled at all those rushing clowns that cut you up on the road to the awesome: “he who works and does his best goes down the road the same as the rest”. My favourite by far is: […] Read more…

playgroup2

The playgroup

I had a dream last night. Not a Martin Luther King sort of dream. Alas. More the sort in which you are doing something randomly bonkers, but in a real-life setting. I was having a row with Adele in my local church hall (I can’t remember what over – perhaps me being a better singer). It was all set up […] Read more…

Gabe,undiagnosed

Let’s get this party started

Today I was invited by SWAN UK to speak at their first All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions in the Houses of Parliament.  I was asked to talk about my family’s experience of having a child with an undiagnosed genetic condition. All Party Parliamentary Groups (APPGs) are informal, cross-party, interest groups […] Read more…

friends

When friendships flounder

I went to an all-girl Catholic convent school during my formative years and boy, oh (lack of) boy, was it an education. It is fair to say that all girls together can be a bit bonkers – funny bonkers and bitchy bonkers. You wise up quick. Friendships in that environment can be transient – it only takes a misunderstanding over a […] Read more…

monster

Monsters under the bed

  It was at my 12-week routine pregnancy scan that I found out that Gabriel was high risk for a chromosomal disorder. The two days we had to wait before we saw the fetal medicine team for a detailed ultrasound were a blur of frightened tears. “We’re the monsters under the bed. The nightmares that keep […] Read more…

good parenting quote

P*ss off parents: what do you know!

There has been a call to action recently in the disabled community. One that initially made my head spin and my heart weep. One that I thought was dangerous and would do the opposite of what it set out to achieve. You probably haven’t heard of it, but it’s been rumbling on all over the festive period (ho ho ho). It’s called […] Read more…

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