Looking in the mirror I don’t recognise the person I’ve become. This relationship is not what I thought, but there were tell-tale signs all along. As a dormant instinct casts a new light, ominous shadows creep into view and I realise abuse doesn’t always look like violence, sometimes it’s dressed up as care. The isolation started [...]
Would you be able to squeeze into your morning routine a 30-minute school drop off (each way) – at a school in the opposite direction to your other children’s local school? Would you still make the school start times? Did you see the range of articles scattered through media outlets following a Reform UK Freedom of Information request about [...]
Today I was at the Labour Party Conference with the incredible Hayley Charlesworth of Harry’s Pals, speaking about Every Parent’s Worst Nightmare. This isn’t about disability.It’s about the mental health of parents and carers who are told their child has a life-limiting condition. No parent ever holds their newborn and imagines being told their child may [...]
CONTENT WARNING: This blog contains ableist slurs with the purpose of understanding and challenging how our ableist attitudes shape and form our language. For ableist slurs not to evolve attitudes need to change. We give words their power. The negativity of our words depends on our attitudes not the letters it contains. Words surrounding disability [...]
Hmm, this feels a bit unusual: Advice for Healthcare Professionals When Dealing With Something Rare By Jo Holmes Once again it’s ‘Rare Disease Day’. While I don't love identifying Lucy’s genetic diagnosis as a disease, I do find belonging in the rare community that builds up around the 28th February each year. You may gather from [...]
Holidays 'Same S*!t Different Location'. That's the title of an episode of 'The Skies We're Under' podcast, a podcast by and for families of children with complex disabilities. It's true... as parent carers wherever we go as a family the routines of daily care don't stop because we're on holiday. Feeds need making, syringes washing, food [...]
In promoting the 'Don't Call Me Mum' initiative and asking practitioners to #CallMe, I often hear the excuse that a hospital professional is simply too busy. It is easy in the bustle of the hospital ward to mistakenly regard the details as unimportant. Like the panoramic view of any hospital stay might include the admission [...]
I’ve heard it said, that children come first. We say it in lots of different ways; ‘It's the kids that matter.’ ‘You need to do what’s best for the children.’ Although I am passionate about the rights of children and their well-being, in our family at least, children don't come first. I have come to see [...]
“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 [...]
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 [...]
