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…

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