When all your strength has disappeared

This last month or so has been crazy. We’ve had the summer holidays which I am sure most of you will agree with me saying, that although I love seeing my kids and being with my kids for the 6 weeks, they need routine and school. Just everything goes a little off the wall regarding…

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…

So much has happened

It seems like I haven’t written a blog for years and so I thought I would update you guys as to why. Unfortunately, my husband and I have decided to separate, this has changed the family dynamic quite a bit and turned my already chaotic life upside down. We quickly learnt that the separation was…

Test results are sort of in

This morning started as any other morning. Had our specialist health visitor come round and talk about what’s happened; how BBG has developed, if there is any more support we can get, and to go through new reports and what has happened in appointments. We left on the usual statement of if/when we get a…

5 minutes of normality

I went to a birthday party with our girl the other week and it was the first time I had really been in a position where people weren’t truly aware of her condition. I had never met any of the other parents or children and so I made the decision not to talk to people…

Stressful times!

How much stress can I person take! I always thought that I could deal with stress well. My previous jobs had always been stressful and yet I seemed to be able to switch off when I left the office. I have moved internationally with 3 children, one being only a few months old, and yet…

I’m struggling, help

Today I decided while the kids were at school, BBG was having a nap and Dad was busy doing allotment things I would take a 5 minute peaceful toilet break with no interruptions! It was bliss! I came back and cried however, as had missed a phone call from an NHS scheme called Short Breaks….