Living with Cerebral Palsy 🍋🍋

Saturday, 29 May 2010

;-(

WARNING: This post contains extreme 'feeling sorry for yourself' sentiment and may cause nausea in those of a more positive disposition.
At the moment I am not 'living with cerebral palsy' as the title of my blog suggests, merely existing with it. Things are tough, on many levels. I feel completely and utterly defeated. Somebody up there is sure taking the mick out of me and having a bloody good laugh at my expense. What's up big guy? Was there nothing on the telly tonight? Did you think you would hurl a few more problems at me and watch how I react for your own amusement? Actually, what I feel like-not to martyr myself in any way you understand- is the Terminator. He of the first film, who kept getting shot in the chest and getting back up again and taking more shots. I have been taking hits for two years- longer than two years actually if you chuck the IVF into the equation- with nothing to do but get myself back on my feet again. In an out-of-body experience way, I wonder how much of this one person can take, how many upsets and how many stresses. At what point does the Terminator stay on the ground?
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Monday, 24 May 2010

Hair today.....

RARRRGHHHH! Tough day on Saturday. Elin had been a little twitchy all week but nothing major to report. She was grand on Saturday morning- albeit a little sweaty on the hottest day of the year bless her! However, then came the time where Paul had to go off to visit his Dad out in Runcorn and as I had a much-needed hair appointment Nanny and Grampy once again stepped up to have some quality Elin time. I had arrived in town a little early for my appointment and so was happily browsing the New Look shelves when my phone went, my heart dropped into my stomach when the word 'Mum' flashed up on the screen. Apparently Elin had decided she didn't want me to have my hair cut and had responded by having a big fit. I can't tell you how scary it was to leg it back to the car and burn home in order to give her the rescue medicine- very aptly named I feel. Luckily she did respond to the meds and so a trip into childrens ward was not necessary, but there were a few minutes when I thought the fit was not going to subside as it was quite violent. Pretty scary for my poor Mum and Dad, who would have needed to call an ambulance had I not answered my phone in time, as you only really have a certain timescale to treat her when she goes into a big fit like that. Lesson learned- train Mum and Dad up in using the rescue medicine. Also and perhaps a more important lesson- don't leave it until the last minute to get your hair done!!!!
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Thursday, 6 May 2010

Elin responds to light..!

video
Elin doing what impressed the opthalmologist so much- i.e clearly seeing the light (and inexplicably finding it hilarious!)
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Saturday, 1 May 2010

Wheels on fire.....


Today we took Elin to town in her brand spanking new NHS buggy/wheelchair. Yup, that's right, we chanced it because the sign up to that point had been good. Guess what? We weren't disappointed!! Woweeeeee she sat in that chair all the way around the shops without so much as a sniffle. Now Im not saying this was just the chair. Mornings are always better for Elin, because she has her medicines in the morning which can take the 'edge' of things a little....but, staying positive, I think we're onto a winner. I could get used to this, I told her, wheeling her around like everybody else, taking my time, actually stopping to look at things. A joyous occasion which I hope can be repeated! One other thing has changed. The chair is fairly obviously a specially made chair for a very special little person. This meant LOTS of 'looks' from other shoppers. Far more than I expected (and I had expected some). But I wasn't bothered at all, at the end of the day people are only looking out of curiosity, it's not often you see such a little person in such a special chair. I cannot believe anyone would ever look out of malice and so I am happy for people to look and to see that not all children are the same, and some children do need special equipment just to get around. Maybe I won't always feel that way, maybe some day when Im rushing and tired and cross I will be sick of other people's stares, but not today. Today nothing can touch me because I took my daughter shopping and ENJOYED it and that's 22 long months waiting to do that. If patience is a virtue I think I should be cannonised by now!!
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