Following the visit Immi and I headed half an hour North to the hospital for an EEG. Her last experience of an EEG was the video telemetry at Birmingham which she doesnt remember with particularly fond memories. However I prepared her well, or so I thought! I wasnt quite ready for her reaction.
When we reached the room she sat down in the chair but suddenly a penny must have dropped because she leapt out of the chair with het hands o er her head screaming "never! You are never doing that again" and dropped to the floor crying. What followed was a mixture of tears and good cop/bad cop parenting from me while the technician and doctor looked on. The tears flowed, with us sat on the floor and Immi lamenting that no one understood what it was like to be her, and that there was no way anyone would ever be able to fix her "nightmares" (what she calls her seizures). No negotiation would convince her otherwise, so I switched to bad cop mode and told her that if she wasn't back in the chair by the time I counted to 3 then there would be no pancakes this evening, no ipad all week and no pizza and film night ritual on Saturday (woe betide anyone who messes with Sat night video and pizza!). I was apparently "evil" and "the worst parent in the world" at this point. To which I told her "I know darling." All the while actually feeling such a mix of emotions; humiliated that I had to deal with it so publically, frustrated with Immi, compassion - I wouldnt want to go through the crap she has to go through either, deep sadness at the despair she feels about her lack of healing and feeling that too and cracks under the determined "tough love" exterior that I was showing.
At "2" she said "if you put the fingers down Ill get up". We follow a scheme called 1,2,3 magic from the States where I count on my fingers without saying anything so she knows consitently how long she has and what will happen next.
I stopped, she got up, I breathed a sigh of relief, she put her hood up! It was her last ditch attempt at defiance, but she gave up quickly when I started to count again. She did however scowl the whole hour...quite a feat!
The rest of the session was readonably uneventful apart from them being able to see constant jolts on the screen that were either undetectable or just very slight when watching Immi.
When we got home Immi went straight up for a shower. I obviously have to stay close at this time. And today I was very glad I did. No sooner had we put the shampoo on than there was an almightly crash and immi lay in the bottom of the shower tray, seizing. I am very thankful the glass didnt break and that it wasnt a hugely long seizure. To be honest I wasnt sure what to do and in the end decided it was the best place to stay. I turned the water off and covered her with a towel and eventually she came round and we finished the shower. As she finished up she said "You dont deserve a girl like me" I replied "I know, I.am so lucky!" "No, I didnt mean it like that." she said. "I know". I reply.
She is clean and cozy and looking forward to pancakes now.
Are there lessons to learn from today? Well one is that consistency pays off. If we hadnt been consistent over the years, following through with doing whag we say then there is no way we would have got that EEG done this afternoon.
A friend wrote and said that is sounded like I need a good nigts sleep. Yes, that is probably true, but days like this are pretty commonplace for us now, so no more than normal. I dont normally post a lot of what goes on on social media etc. But sometimes I think it is good to part the curtains and let people see a glimpse of "normal" life.
So if you know someone who is parenting a child with a special need of any kind, please remember; the snap shot you see is the day in, day out, suck it up buttercup, batton down the hatches, set sail and don't give up life, they have to lead every day. Somedays are tough but good, somedays are tough and bad but every special needs parent knows that their child is worth it.
