On 29th November I was privileged to speak on behalf of parents at the Disabled Children's Partnership manifesto launch at Parliament. It was fantastic to see so many charities and influential people recognising the struggles families like mine face daily. It was refreshing to feel seen and heard, that people are acknowledging the #SecretLivesofUs and wanting [...]
The lights were on, the stage packed and hundreds of people sat in anticipation. For months, volunteers, family and friends had supported performers to practice every week. Last night, S was on stage with an amazing group of people for Music is Magic at the London Palladium. It is the second time he has had [...]
“It’s just so hard, it's constant, not just physically but emotionally and mentally.” I muster every ounce of ‘I hear you’, with a simple nod. In slightly more frantic tones she continues, “it isn’t that it isn’t good, it is wonderful, she is deligh…” “Stop, you don’t need to explain.” Three times this week I [...]
Challenging 100% Attendance Awards: There are many important things to make a noise about. Human trafficking, climate change, malaria epidemic, hunger, and the rights of LGBT are just a few that spring to mind. But in my little corner of the world, we are affected by ableism. Bringing up a family in a society that values [...]
I was lying in bed this week and the image of Oliver floated into my head. I was debating with myself whether I dare ask for an increased care package for my son. “Please, sir, I want some more…” It's an iconic line from classic novel that has been retold to generations. I confess, I've [...]
A woman dreamed of having her own garden. She pictured herself planting and tending flowers of all shapes and sizes. She hoped her borders would brim with colour and fragrance, laced with creepers displaying exotic blooms and a winding path through blossoms humming with wildlife. When she moved in to her forever [...]
A defining moment can happen anywhere, for us it came at ten weeks old, in the Hammersmith hospital in London. It was the line in the sand that once stepped over, there was no turning back. ‘When my son was in the scanner for longer than expected, a battle began in my mind. Was this a [...]
VIRAL Blog post from July 2016 seen by over 4 million people and still creating waves. Four reasons my son won't accept his 100% Attendance Award. No. 2 son has been awarded an evening at a soft play centre because he has 100% attendance at school. He loves going to soft play, he loves going [...]
#vote2017 The snap General election, geared at making our nation more stable and stronger for the future, is here. For the third time in as many years, the UK sits on the brink, but will tomorrow bring change? There are certain experiences in life that bring out the best and worst in people. Parenthood, terrorist [...]
Events this week has reminded us all how life can change in a minute. The tragedy in Manchester has shattered the hearts and lives of so many families. For 49,000 families in the UK, we know the reality of a life defining moment. Our children have a life-limiting diagnosis and so we have experienced first hand [...]
