Full moon

and epilepsy

It’s been a while. I never got round to posting part 2 of “Champing” in a church. Can’t believe a whole month has passed already.

My youngest son, it turns out, has been having seizures for a good while and we never even knew. To think we were far away from home and sleeping in an old church miles from anywhere with barely a phone signal….. I dread to think what could have happened in an emergency.

But I know that is pointless thinking.

He’d been sleepy for a while but I just put that down to him being up in the middle of the night. Now and then he also did a little “jump scare” out the blue. One of the lovely ladies who does physio with him noticed this and referred us to the hospital for some tests.

So a couple of weeks after coming back from our camping trip he was at the hospital having a EEG where they discovered his brain was firing all the time, like crazily. Bonkers. Off the scale really.

We were called in a few days later, they said to come in quite quickly. You know how it is -t hey try to disguise any sense of urgency on the phone but I got what they meant.

Off we trundled straight away to the hospital, quite reluctantly as we’d been there many times before and you never really understand a) what the hell is going off or b) if any of it is even necessary. Oh, and also c) you don’t know how long you’re going to be in for and what are you going to do about all the other kids/house/dog etc!

In this case it was necessary. So he was in a week while they monitored him and sorted some medication. I had prided myself that he was on no meds at all until this point. But these ones have been important. In fact I would go so far as to say he’s a new boy now!! I got my old Robin back 😍

Epilepsy is a complete minefield. I’ve not got a clue about anything but now need to learn and it’s surprising just how many people have it after speaking to folks I know.

His brain was firing so much that it was affecting his learning and development. And thus he was also so sleepy. The low level seizures are still there now and then but, according to the follow up EEG, his brain activity has totally changed. He is awake and alert and is my old Robin again! (completely crazy, bouncy, playful and alert).

It is amazing how much I had just got used to him being sleepy.

While we were in the hospital it was the full moon and I had to cancel my last full moon walk (due on Saturday 6th). The night of that walk, though, I could not believe my eyes when the moon rose exactly in line with the small slither of a window we had there.

It is incredibly disorientating once you get inside the Queens Medical Centre (QMC-Nottingham’s main hospital). You go round and round in circles and back on yourself so many times that you’ve no idea which direction you’re facing out the window!

Here is little Robin in his hospital bed as we watched the full moon rising last month. I had organised one of my full moon singing walks and, had it gone ahead, I’d have been up the pit tops at this point where there is no light pollution for miles around. You get a full 360 view of what would have been the collieries of Newstead and Annesley - a very different sight back then.

I think they’ve done a grand job of bringing this place back to nature.

I was lucky enough to live in Newstead village when the big kids were small - what a great place to grow up. It was really old fashioned - they could go play out om their own and most of our home-ed days were spent over the fields cooking breakfast on the rocket stove or making fires in the woods (don’t tell anyone - people get rather funny about this as though I am going to burn the whole of Sherwood forest down!).

These two are so grown up now!

I’m not daft. My dad was, after all, a pyrotechnic and I used to help him with his displays sometimes. (I feel sure there’s a book called “The Firework Makers Daughter”.)

I only really started building fires as an adult as my dad, quite understandably, had a fear of us being near fire (his little sister died tragically after catching her dress in a garden bonfire, sadly) but I’ve let my kids chop wood and “play with fire” since they were young. Important skills to have .

Anyway I once again digress. The moon is full and a whole cycle has passed. Again. Robin’s one more month bigger and, well of course, we are ALL a month older, wiser, stupider, cleverer, closer to death, etc!

In Robin’s case now that his brain works ‘properly’ again he’s grown that much more and is so much more awake!

(Video from a couple of years ago in those same woods where we were always making fires - he’s loads bigger now!)