Surviving the S**t Storm…

A really honest and raw account of going through cancer whilst supporting a disabled child. It’s a long one so maybe put the kettle on first. It may not be the worst experience but it’s my experience. If you need help; https://www.mind.org.uk/ https://www.jostrust.org.uk/ https://contact.org.uk/

A bit like a unicorn or a mermaid…

Today is Undiagnosed Children’s day💕 To date we still have no definitive diagnosis for our Little E. At times, this is incredibly difficult. I’m not saying having a diagnosis would be any easier but it may give us some answers; some connections. What we know is that Edith is Hypotonic (floppy), she has developmental delay [...]

A day to remember…

Two years, ten months and seven days ago around this time Edith fell backward and bumped her head and had an hour long tonic clonic seizure. I was placing her on the floor and positioned her absentmindedly and she fell backwards between my legs and bumped the back of her head. She cried for about [...]

An Angel of Sorts…

At the end of last year I began another bit of "Dr Googling" after speaking with a mum about her daughters diagnosis of Rett syndrome. I noticed that Edith mildly embodied some of the characteristics or symptoms and began to question if she had ever been tested. Rett syndrome is most common in females and is [...]

This time next year…

It's kind of hard to believe that this time next year Edith will be at school. Being born in February is actually a great advantage for her as it means she will almost be five when she starts school, this gives her a little extra time to develop before she starts full time education. Before [...]