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... [...]

A week of mixed emotions…

This week I have once again learnt to never take a moment for granted, as things can change in the blink of an eye. Edith went back to school this week and I have to say, it was a welcome relief. She loves school and we both struggle in the holidays. Routine is of the [...]

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 [...]