November. It’s that time of year again when Pudsey is dusting off his eye patch and schools around the country are asking children to come in wearing spots (because we all have spotty clothes in our cupboards) to raise money for Children in Need. What could possibly be wrong with [...]
Medications 7 times through the day and night isn't cancelled. 24-hour PEG feeds aren't cancelled. Hoisting and toileting isn't cancelled. 24-hour postural care isn’t cancelled. Personal care isn't cancelled. Cooking, cleaning, educating, playing, resting isn’t cancelled. Contacting and negotiating with professionals isn’t cancelled. Visual stimulation, sensory stimulation and active movements aren’t cancelled Trying to keep your [...]
What is easy about a weekend? I often get that Monday feeling on a Friday afternoon. It marks the start of me juggling the expectations and responsibilities. The struggle to rest, relax, have family time and 24/7 care. The Commodores classic 1970’s hit song, Easy like a Sunday morning, was a song on a jazz [...]
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 [...]
For about three seconds in 2005 (the year I became a mum) I thought I could be a SuperMum. It didn’t last long. Unfortunately, I spent a few years trying to pretend to be a Supermum. Every morning I donned my Lycra suit and tried to trick everyone into thinking I’m Superwoman. Having a son with severe disabilities meant [...]
Is it just me? Or does anyone else feel like they are desperately trying to keep their house in order whilst stopping themselves from falling over the edge? I’ve always enjoyed living life a little on the edge. I love travelling and feeling like the foreigner. I’ve even been known to eat something that is a day [...]
"Grown-ups write letters to the council all the time but nine-year-old boys don't," I assured him. "We all need to say what we think is right, no matter how old we are."
It is a common phenomenon for parents of children with complex needs to hear 'No' from professionals and councils. A universal experience is our need to fight for our children.
There is something I’ve discovered, no matter how hard I try, moments still only last a second. Over the last year I have tried really hard to soak up life but time still just flies by as moments effortlessly slip through my fingers, no matter how hard I grip or how deeply I breathe.
The debate about the ‘Down Syndrome Blood Test’ is raging. Unfortunately, I think a lot of it fails to question whether any blood test can accurately measure the value of a life.