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 [...]
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... [...]
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 [...]
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/
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 [...]
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 [...]
It absolutely pains me to say this but I just haven't really felt Christmas this year. We took a short break away with some friends at the beginning of December and when we returned I couldn't wait to buy and put up our Christmas tree but that's where it stopped. Ever since I was a [...]
I haven't had the time to write recently and there has been so much happening, I wasn't sure what to write about first. As the first day of school draws near I have so many mixed emotions. The school holidays have dragged and at times have been extremely difficult. I have zero strength left to [...]
