Camping!

Just a quick update on our camping trip with Lucie.  Despite it being her first time without the (in her mind) life support systems of wifi connection and TV, Lucie did good. We went to Kendal for a couple of nights and it was gorgeous. The weather was kind and the forest site, just the thing. Lots of hooting owls at night and in fairness to the Caravan Club, their pitches are always well spaced out. The Caravan Club are also of-course famed for their rather old fashioned values; a throw back to the 1950s, when gay was just something you where when the sun shone and sex hadn't been invented yet. Good thing they didn't spot our tent then. It was intended as a bedroom for me (Mimi is a two person only campervan), but failed because the airbed we brought wouldn't fit in it. My fault - obviously. The tent's outside is emblazoned with the words - FULLY ERECT - and well, see below... you get the idea! We hid it behind Mimi and just hoped no retired colonel passed by too close!

The first night was magical. As parents of autistic children, we always say we don't complain about the extra difficulties, its more those 'special moments' we miss which hurt - the passed driving tests, helping with homework, exam results, etc. But just every so often.......we are rewarded and the first night was lovely. We all went for a walk in the forest and afterwards Lucie giggled away in the campervan. Owls hooted for us and we sat outside with some wine until it got dark. Even being huddled together in Mimi was fine - yes it was cramped, but with all the windows open, sharing the summer night air and listening to forest sounds was divine. Okay - Helen went for the longest tiddle ever at about 3am, but I'm a Creative Writing tutor, I just thought of forest streams and indulged in the feel-good-Disney fest a little longer.

Day two was decent too - although the spell had been broken - probably by the shopping trip into Kendal. Nu-look isn't very 'Disney' - nor were the crowds. But at least we'd had a good time and will always have the memory of that special first night. This is all we ever ask really - just the odd 'moment'.

Lucie did enjoy herself, I am sure of that. But her summing up of the experience:

'Premier Inn next time dad!?'  Oh well - at least I won't have to hid my embarrassing erection.......!

Thanks for reading.

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