About us

We are a hard working, family of eight. Swimming in the sea when we aren't busy on our small holding. Daddy dragon has to work away a lot, so this blog is to let him keep up with our adventures at home.

Tuesday, 17 October 2017

A new chapter

My darkest days have tended to be in hospital. I really struggle in hospital. Feeling trapped, powerless to halt the Rollercoaster of tests and treatments... And worst with neurology... The 'under observation'. Is there anything worse than spending four or five days... Especially over bank holiday weekends because it always happens over those, where you are imprisoned on a ward while they watch your child seize over and over and do nothing. While they watch them vomit again and again,  deteriorate and do nothing.

That waiting kills me every time. Then just as I am ready to loose the plot, a flurry or tests, and treatments which days earlier, I might have had the head space to cope with... And frankly I am energy less. I feel like I have nothing left. Numbness takes over as they diagnose and decide our fate and if we are to escape home. Then at home, I feel like hiding, a lot of sofa time while we try to find our feet again. With new routines, equipment, heal from a surgery. 

I tend to loose 10lbs every time we set foot in the hospital... 

This visit is set to be no different on the emotional difficulty level, I think 10lbs may be an understatement of loss this time.

And yet, and yet, for the first time in a long time we feel more confident that we are on the right path, that we have more understanding. And that our medical team are working together.

More scary diagnosise loom, but others are laid to rest.

After a long day's night, we are working, hoping, praying for gentle, calmer tomorrows.

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