Stormy Seas

Well the fair weather and plain sailing of this holiday couldn't last forever and sure enough, after a lovely afternoon with friends on Wednesday, we came home to a message phone-message.

'Can you please call us at the Glen'

The Glen, of-course, is the respite-centre Lucie and Em go to one night a week. We always take our mobiles with us whenever the girls are there, but for some reason (lack of signal?), the message had not got through and it was with a sense of foreboding that we dialed the number.

As it turns out, our guess was correct, Lucie had had another epilepsy seizure and whilst we knew she had come round okay, the drive through rush hour traffic to get to her was pretty stressful. When your children are ill, you forget about respite-breaks and planned adult evenings - you just want to get to them. Long time since I've felt the tug of road rage, but I came close in the heat as I struggled through the roadworks, queues and other grumpy drivers. Oh for my own emergency siren! Finally though I arrived and the stress melted as I was able to give her a hug and re-assure her. The Glen staff are wonderful, as always, and had packed all her belongings ready to leave.

Today and after a good sleep, Lucie is back to her old self. But we are just so disappointed that after three very hopeful months without a seizure, the drugs she had been taking are no longer the miracle cure we hoped for. Maybe we knew this would happen, epilepsy is something you control, not cure, but Helen and I had just started to relax. We weren't racing out of our seats at every bump from upstairs, whilst Luce had stopped worrying about whether her 'legs were broken'. Poor girl; she makes sense of it all by thinking that if she falls over (during a fit) - it must be because her legs are faulty!

To make things harder, Emilie then returned this morning from the Glen and was extremely difficult. As her ranting upsets Lucie, I took Em for a walk round the village - but she absolutely howled. At any moment I expected arrest, we looked a dead ringer for one of those kidnap warning documentaries - 'shout, scream, kick, create as much noise as possible and bad man might run away'. This man felt like running, I can tell you!

This is not a picture of me!

But - as I type now, things are calmer. Em is playing and bouncing on her favourite armchair (the one with springs so destroyed, you need a stepladder to get out of it!) and Lucie is in her beloved summer-house. Tomorrow Em is back at the Glen (she visits one weekend in four) and the rest of us are going camping, trying our new awning out for the first time. Things can only get.......more complicated! But we've had a good run until today, so lots of energy left. :-)

Thanks for reading,



Mark