Sunday, 16 December 2012

OMG it's nearly Christmas!

I have been so busy the last few months but if you were to ask me what I've been doing, I would struggle to answer!

This time last year I was stressed to the eyeballs with a very ill child who this year, as I type, is rolling around on the floor, trying desperately to get up onto his knees and laughing at his own attempts. I daren't say things are looking up but my Jackyboy is looking good right now.

Jackyboy looking such a cool dude

Holly has just finished her first semester at University and came home yesterday. It is good to have her back for a few weeks as I was needing a "Holly" fix. I picked her up at 12 noon and within in an hour we were in the cinema watching Breaking Dawn part 2, doing the stuff we always do. She is so grown up already and much more confident than she was 6 months ago. I am so proud of her.

My grown up babies

My house has been quieter without her but Virginia  has been a huge help in keeping me company and making me laugh. She flew home for Christmas yesterday and one of the last texts I received from her went like this "About to board flight. I think I found a man for you, SERIOUSLY!" This made me howl with laughter as it is a standing joke that I don't actually notice guys much unless they are so in my face, I can't ignore them. It's not that I am not interested so much as I am well out of practise when it comes to the male species!

Virginia, having her first High Tea

The last few months have been tied up with the Transitions event I was part of which went really well, although there were a few stressful moments! Hopefully it will do some good and there will be changes made to the way things are done.

I also had a meeting with a representative of the NHS re the treatment of Jack while he was in hospital in Aberdeen. He didn't know the full story (surprise surprise) so I took the opportunity to fill him in and by the time the meeting was over he and I had come to an understanding. My complaint was not about the nurses as they did a fantastic job but were powerless to help us as they were able to make few decisions re Jack's care even though they were the ones having to watch him suffer!

He gave me details of the new procedures that have been put in place to complain, whilst still on the ward, if you have any issues with your child's care, which I asked for in writing. He said that nurses themselves can also complain now if they feel the consultant is being unreasonable which is brilliant news. Also we discussed using Jack and I's awful experience as a learning tool to teach new doctors and nurses on how to listen to parents who are essentially the experts on their special needs children. I am keen to do this because it really is time that hospitals and consultants moved away from this idea that the doctor is God and his word is law.

It doesn't change the fact that Jack suffered so much at their hands but it does mean that any children and their parents coming along after Jack will hopefully have an easier time while in hospital.

I have been down to Edinburgh a few times to visit Holly, made an awesome Halloween costume for Jack, been on TV (for all of 10 seconds), been to Rachel House for a week in November, taken a trip up to Skye during a really wet weekend, visited my friend Kathy in Aberdeen and been traumatised by how much her son has grown and how deep his voice has become! So much so that I keep teasing him by telling him that he's not allowed to speak when I am around! Tee hee hee.

Jack's Halloween costume....I turned his wheelchair into a pirate ship
with pirate Jack

Some days I feel like I meet myself coming back! So much so that while Jack was in respite for 3 days this week, I did nothing. It was totally bliss. I soooooooo needed it too as I was just so damned tired.

Christmas is only 9 days away and for the first time ever, I am organised. How the hell did that happen? Well mostly it's cos I have allowed people to help me. Virginia helped me wrap prezzies and my sister Kathleen, who is here for Christmas, has been helping with Jack and making sure I eat properly cos I am so busy some days that I forget to eat til I am nearly passing out! My New Year's Resolution is to try and have breakfast every day.

Oops I am on the naughty list!!
We are off down to Rachel House again on Tues for three days. I am combining this with a visit to see Jack's Neurologist at Sick Kids so Tuesday will be a busy day. I am hoping that three days of the balm that is Rachel House will set me up for the festivities.

Hope you all have a lovely Christmas.

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