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!

Is no surgery ever an option?

I recently visited Alder Hey children’s hospital in Liverpool to discuss the next steps of Harrys reconstruction with his lead consultant and other specialists. Its always a daunting time with so much to remember and consider and as I shared the day on our social...

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3 reasons why I need to let my son struggle

Recently, I watched a fantastic interview by Kristina Kuzmic (below) who you can find on Facebook as the ‘Truth Bomb Mom’. She was speaking with her friend Zach Anner about his disability and he was explaining the things that his own mother has done as he’s grown up...

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What non verbal means for us.

Recently one Sunday afternoon as I was cuddling my son on the sofa he asked “Jamas?” I said “No, you’re going to your Dads soon. You need to stay dressed” He repeated “Jamas” and then “Jamas pwease” (which I have to say melts my heart every time I hear it) I still...

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9 tips when considering special needs schools

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...

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Another option for ear reconstruction

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...

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To the mother with the life I will never know.

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...

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7 reasons why SEND education is like a snow globe

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...

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Neurotypical sibling superheroes – The Return

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,...

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7 things I never thought I’d say as a mum

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...

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