Mind the Gap: Parliament DCP manifesto launch

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 to see change.   [...]

By |December 15th, 2017|Categories: Uncategorized|1 Comment

Success and how to measure it.

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 this incredible opportunity. I [...]

By |October 16th, 2017|Categories: Uncategorized|0 Comments

Good parent, bad emotions. #worldmentalhealthday

“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 have cut my friends [...]

100% Attendance Awards Government Petition

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 people only because of [...]

By |October 6th, 2017|Categories: Uncategorized|4 Comments

“Please, Sir, I want some more.”

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 never read the book [...]

By |September 13th, 2017|Categories: Help, Respite, Thriving not surviving|0 Comments

The pain of sharing someone else’s joy.

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 home, it was nothing [...]

By |August 17th, 2017|Categories: garden, joy, Lost dreams, mum of child with disability, Sorrow, wounds|0 Comments