Ben had brain surgery last week. It was an elective operation, in which electrodes were inserted into his brain. These are connected to a battery pack about the size of a cigarette packet on the right side of his tummy. The idea is to try to reduce his dystonia and therefore give him a bit … Continue reading Brain surgery
Milestones are a tricky thing for parents and children like us and Ben. Many of the obvious ones from early childhood never materialised and perhaps some never will. If they do, they will be the result of years of hard work on Ben’s part, considerable therapy input and a lot of patience. This is why … Continue reading Ben can cycle!
Ben is 6! Like every year, the actual day is full of mixed emotions. While we are joyful that we are celebrating six years since Ben joined us, on the day I am also mindful that this time six years ago Ben was being resuscitated then being transferred on his own in an ambulance to … Continue reading Ben is 6!
Our family, and Ben in particular, are pretty intense users of the NHS. I breezed through my twenties with barely a GP appointment but in the last six years we have been really getting to know the people and processes that make up our national health service. In the last three months Ben has had … Continue reading Appreciating good doctors
This is my latest interview in an occasional series – A Parent Perspective – with Amy. Amy lives with her family in Cornwall, working as an artist and making beautiful pots. Her daughter, Rosa, has a rare genetic disorder and I really enjoyed talking to Amy about how she has trusted her instincts as they … Continue reading A Parent Perspective: Interview with Amy
Ben has always had abundant hair. When he was very little he had curly, light hair which his neurologist said reminded him of Harry Styles and when he was one it needed to be trimmed. He had that typical baby thing of very little hair in some areas and way too much in others. The … Continue reading Haircuts
Ben is seven! We celebrated with, amongst other things, an egg-free chocolate cake that I whizzed up in our blender and gave to Ben through his feeding tube. With every passing year I sound a bit more like my mum: “I can’t believe you’re seven years old! I remember when you were just a baby!” … Continue reading Ben is 7!
All kids look up to those older than them, and Max is no different. Ben is almost 6, Max is 3 and Max wants to do all of the things Ben does: go to school, go swimming, watch Dennis the Menace. Max knows Ben is disabled and because chronology is tricky when you are 3, … Continue reading Brothers and sisters