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!
What will happen to my son when I die?
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...
7 ways to help your child understand facial disfigurement
When my twins were born prematurely I had no idea that Harry would have a rare cranio-facial condition called Goldenhar syndrome. I didn’t cope very well with the news that my son had a facial disfigurement in the early days, particularly as we weren’t sure of the...
3 reasons why this autism mum can’t win
It seems that I always get inspiration to write a blog while I’m testing my bladder control at the local trampoline centre (with the boys, I don’t go alone!) The last time I was there I wrote one of my most read blogs to date – To the mother of the life I will never...
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...
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...
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...
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...
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...
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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