When enough is enough

As I approach BBGs 2nd birthday, a milestone I thought I’d never see, I was looking back at what tests and procedures she has endured over the last year, and it got me thinking: when do you say “no more”? To me my beautiful daughter is living on bonus time anyway, she is doing things…

Next Steps for our SWAN

As readers of my social media pages may have seen we were called up to GOSH Thursday and we weren’t really sure why. We knew it wouldn’t be for a diagnosis as all the tests had come back negative and there’s no way the 100k Genome project would have an answer within 2 weeks of…

I hate this unknown 

I feel awful writing this… I hate my daughters condition. It has robbed me of her first year, her first year is meant to be exciting and yet for a year I have been worried senseless.  I feel robbed of her future!  Will she just need a tablet? Probably not!  Will she grow old and…

Getting close to an answer?

This last week we have had a big old report back from GOSH detailing their findings from the neuro muscular team; we still haven’t had the results back from our long old stay up there but that’s under the neurology team.  It said everything we knew before, she’s globally delayed, she has fluctuating skills, kidney…

Disabled bays are for the disabled

I went to my local supermarket last night to quickly pop in and buy a couple of bits. I had BG with me who is starting to be a little disability advocate and will happily tell people about disability etc. As we were walking past the disabled bays she asked about them and why they…

A letter to myself in 10 years time

I’ve seen a lot of letters that are addressed to yourself 10 years ago but I was thinking about the future so I decided I would write a letter to myself in 10 years time! To 37 year old me, I am writing this and I don’t know what has happened in this last decade….

The life of a SWAN

Swans are beautiful, and they have a certain majestic quality to them. The fact they are pure white to me always represents their innocence. My daughters a SWAN, not because she is a bird, but she is a child with a syndrome without a name.  She captivates everyone she meets with her beautiful smile, she…