We try really hard not to let our altered life hold us back from enjoying what is also a very rich and beautiful life. But, I cant deny that we often face some challenges along the way.
In my ‘adventures of an altered life’ series I aim to share with you the ordinary fun of an extraordinary journey. This will include accounts of our days out, holidays away and general life in the fast lane.
I’ll also be sharing the difficulty in making huge decisions for Harry and his future face and life as well as the results of those decisions – often hilarious and heart warming, always nerve wrecking and full of never ending hope.
Great to have you with us to share these adventures. Buckle up, it can be a bumpy ride!
I am quite used to explaining why Harry's face looks different to most nowadays and if facial disfigurement is something you would struggle to explain to your child then please check out my bog post on 7 ways to help your child understand facial disfigurement as the...read more
Harry recently had planned surgery on his eye socket and as ever, I found myself with time on my hands as I waited for him to return to the ward. I sat in the café and then at the side of the hospital bed and I got thinking about all the times I had been here. Waiting...read more
I never wanted to be the mum of a child with additional needs (see also – special needs, disabilities). It was never in the plan. When Harry received his second label in life of Autism (after his diagnosis of a cranio facial condition called Goldenhar syndrome) I...read more
I was recently asked to give a talk at a local college to students embarking on a career as health care professionals about my experiences both positive and negative and the impact that had on me as a parent. I have to say that I really enjoyed preparing for the talk...read more
After I spoke on radio 5 live recently about the minefield surrounding making arrangements for my disabled son after I die, I had a chat with a legal advisor Philip Warford from Renaissance Legal who was part of the team of experts who spoke on the show. Phil...read more
I was recently asked to share my experiences of parenting a child with autism for an international website called Healthline which is the second largest health and wellness site on the internet! No pressure then *gulp* I discussed some ideas with them and one aspect...read more
Dear autism, We need to talk. You knew me before I knew you. I know that you make your presence known suddenly for some families but you crept up on us gradually as I was adjusting to other news about Harrys health and I am grateful for that. There was no sense that...read more
Looking back in life isn’t always the best thing to do but often I find myself remembering a time when life was so very different and comparing it to life now. My friends’ babies came home with balloons and stuffed teddies. Harry came home with a list of professionals...read more
As a new parent, the concept of death is about as far from your mind as it possibly could be. However, when your baby has a life limiting disability, the certainty of your own death is painfully ever present. This is my reality, as it is for a large number of parents...read more