If I could pick one thing to fix - this would be it.

There is nothing quite so paralysing as watching your daughter have a seizure.

Immi's epilepsy started about 4 years ago now.  She was in Reception with an awesome teacher, who became a great friend. There were no signs, no headaches, no aura.  One day she was walking into assembly at school and when the class stopped ready to sit down, she just kept walking into the child in front of her and then went into a seizure.  Her brother who was in year one at the time watched the whole thing; her uncontrollable shaking, the teachers' panic, wide eyed friends around.  The ambulance came and took her to the hospital, we met them there.  She was already undergoing tests for her Dystonia, so this just started another round of testing and the start of what was to be a long journey of trialling different drug combinations to try to control the seizures.

After that day she continued having seizures which lasted at that point up to about 2 or 3 minutes.  I cannot explain to you the feeling of helplessness that comes over you as a parent watching that.  I am so thankful for prayer, that I can lay my hands on her and pray for the Holy Spirit's control.  We definitely started seeing a shortening of duration when we started praying like this.  
Our son in the early days would wander off during a seizure, he just couldn't cope with watching Immi go through something that he couldn't do anything about, so he would run off to his bedroom, and come back when it was over.

At the beginning all the medical staff refer to her seizures as seizures, but suddenly somewhere down the line someone started to refer to them as Epilepsy.  We don't know who or when, but suddenly she had epilepsy.  No one sat us down and explained the difference, no one sat us down and told us what to do.  We didn't want the diagnosis and so we didn't ask.  It was actually months later when I finally asked how long a seizure should go on for before you call an ambulance, and 'can the short 1 minute (seem like eternity) seizures cause damage in her brain?'  Apparently if a seizure goes on for 4 minutes that is when you call an ambulance.
Every time we return to the hospital they ask detailed questions about the time and nature of the seizures.  We keep a diary now of when and how long they last; whether it was a seizure or a jolt (not the proper name, but it is like an electric shock goes through her just once), or just being sick - also linked we think.  But they also ask us, was it one side? Was it her whole body?  which way does she look? etc etc.  What I really want to do I yell at them, 'I'm her mother, I don't stand back an observe her at these moments!  I am willing her to get out of it.  Everything inside me is screaming at it to stop! I don't notice which arm is twitching, or whether it is both, all I am aware of is that she is uncontrollably shaking, stiff as a board and I want her well.'  
But I don't.  Instead I cast my mind back to the last few seizures, all indelibly etched in my mind, and try to become an observer and tell them what they need to know.

There was one seizure where I realise I did become an observer.  It was our son's swimming lesson in the local pool.  He was getting changed and Immi and I had gone to reception to sort out the next term of swimming.  She cannot stand still, so I told her she needed to stay at least where I could see her, there were about 3 others in front of me.  To the left of the reception was an area set back with tables and vending machines, she wandered in there looking at the crisps in the machines.  While she stayed at the left I could still see her.  Suddenly I was at the front talking to receptionist, arranging the lessons.  Imogen had moved to the right, I could no longer see her, but I was in full flow and would only be a minute, my mind was in the lesson arranging.

Suddenly, there were sirens going off and staff running everywhere, it took a second and then I realised. It was Imogen.  I ran round the corner and saw 2 mothers of other children and  2 staff workers all knelt on the floor around a person shaking, jerking, moving uncontrollably.  It must have only been a few seconds, but in that time I was suddenly an observer, suddenly I was watching an epileptic person having a seizure, like watching a programme on TV.  I saw for that second, what other people see when she is having a seizure.  Horrid in its nature, but separated, for a split second there was distance, and then it kicked in, I rushed over; embarrassed that I had left her for a second, angry (I don't know who with, myself? God? the Mum's who were helping?  The receptionist for taking so long to get to me? I don't know, but I was!) I politely explained that this was part of life for us and that she would be fine in a few minutes; waited for her to come round, waited for her speech to return, waited to see if I needed to change her clothes for her, waited to escape the concerned looks and curious stares.

I hate epilepsy, I hate the unknown nature of it.  I hate what it does to my daughter. I hate that she can't have a bath or go swimming without me watching her like a hawk, never leaving her side.  I hate the fact that at present she is taking a cocktail of 3 drugs which don't quite control the seizures, but do make her incredibly tired; so tired that if she slept every hour there is she would still be tired.  I am amazed at how she never complains, never asks me 'why?', she just looks up at me after a seizure with a big smile, searching her brain for my name, searching her brain for any words.  Rebooting, ready to get going again - she is amazing.

As for me - If I could pick one thing to fix - this would be it.