Blog post

…A Year On…

My eyes scan the screen. I read and re-read what they had typed. They are the ones who are paving the way for me and others like me. They never asked for that “job“. No one would ever ask for that “job.” Against […]

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Ethan Rocks!

Hello and welcome! If you have made your way to this website due to finding one of Ethan Rocks, I am delighted to ‘see’ you! What started as something to keep my mind busy grew into something bigger than I could have […]

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They say our loved ones can send us ‘signs’. I am sure the grief we live with can make us, the bereaved, more susceptible to these kinds of ‘signs’. We seek them out. We ask for these ‘signs’, regardless of our religious beliefs.
I have never seen so many Robins or feathers randomly strewn across any path I walk since my brother Liam and son Ethan passed away.

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Carers Week

Carers Week runs from the 7th until June 13th. The theme for this years week is ‘Making Carers Visible’.How can we make Carers visible?How many times have Carers heard, “I don’t know how you do it. I couldn’t. You are amazing.”That sentence […]

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The cold air blows through the concrete shed. It is just us in here. Still, I leave my mask around my face. I don’t want to be here, and I don’t want to have this experience. I think of my mother sitting […]

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May for us has always been a month to promote awareness around Mucopolysaccharidosis (also known as MPS. I imagine because it’s pretty tricky to pronounce Mucopolysaccharidosis!)MPS Awareness Day is May the 15th. For years, I have tried to make it a ‘known’ […]

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Who Am I?

The morning sun paints the dining room, illuminating the bright yellow walls. I sit at the table with my freshly made cup of tea.My daily routine is so vastly different these days. Sometimes I am unsure what it is I should do […]

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Summer dances over the horizon, Seven months have crawled by, Yet, seven months have sped away, I’m stuck in a sandpit of sorrow, Despite the seasons rolling by, Your smile, your laugh, your voice echoes,   All the while the sun still rises […]

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Grief- what we don’t say.

Why don’t we talk openly about the gut wrecthing loss of a child? The fact is we don’t want to burden, upset or shock, yes shock, those who care enough to ask, “How are you doing?”. I think we should talk about […]

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One of the messages that seem to repeat in my inbox are about how the book has made it easier for parents to help their friends and family understand a little bit about thier life with a child who has extra needs.

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