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!
My son Harry was born prematurely at 32 weeks along with his twin brother Oliver. Not only was he tiny (3lb 9oz) and very vulnerable but at his birth we discovered that he had a rare craniofacial condition called Goldenhar syndrome. You can read how I coped (or didn’t...read more
Ear reconstruction seems quite a strange topic until I explain that my Son Harry was born with a cranio-facial condition called Goldenhar Syndrome. One of the aspects of this syndrome include a small (or in Harry's case completely missing) ear. In discussing the...read more
I see you. Enjoying a life I had expected a long time ago. You’re sitting at the edge of the trampoline centre reading a book. You look totally engrossed in it, glancing up occasionally and topping up the tea (maybe coffee) from your flask. Your children have their...read more
I do love a good snow globe as does my son Oliver. I’ve brought three back for him from various holidays. It appears that the magic of ‘shake and wonder’ appeals in the sunshine as much as it does in the winter time. Recently, I was at Harrys school for his Christmas...read more
I recently wrote about the 5 reasons why my son Oliver is the unsung hero of our story as the sibling of Harry who has a rare cranio facial condition and autism. I proudly recognised his patience and acceptance, empathy and maturity, forgiveness and understanding,...read more
Before you became a parent, how did you visualise your role? Did you see yourself as the fun mum/dad or did you see yourself as firm but fair? And at what point did you hear yourself turning into your own parents by echoing the words they’d muttered to you in the past...read more
If you follow my blog you will know that I have raved for ages about the book called Wonder which tells the story of August Pullman who has a cranio-facial condition called Treacher collins syndrome. I explained why reading the book touched me more than it might...read more
Choosing the right school for any child can be overwhelming and stressful. Add in the extra considerations of disability, in any form, and the process becomes even harder. Harry has Goldenhar syndrome which is a rare cranio-facial condition but that alone wasn’t the...read more
Recently, I wrote a blog about the best parenting advice that friends had been given before or as soon as they became parents for the first time. There weren’t any big surprises in there (although there was a plug for Tena ladies I didn’t see coming!) but as soon as I...read more