Undiagnosed Children’s Day 2020…

Today is Undiagnosed Children’s Day. Did you know that children who have no formal diagnosis are called SWANS? Syndromes Without A Name. Most of the time I’m not troubled by the fact that Edith is officially undiagnosed. Since birth, Edith has only ever shown progression and I think this helps me a lot. However, it’s [...]

Another kind of normal…

So it’ll be 5 weeks tomorrow since we started our family lockdown. Edith’s school wrapped up on Wednesday 18th March and she didn’t attend that day due to waking at 4am and my nerves being shot to pieces. I am still struggling to get my head around this whole thing to be honest, I mean... [...]

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 [...]