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Archive for November 4th, 2012

Since I spend most of the week days at home on my own right now, my fiance and I try and make the most of the weekends to get me out and give me a change of scenery and stop me from feeling too isolated. Even though I’m grateful for small things like actually being able to function and get downstairs,  it does get lonely at times and I wish I could get out more. So today, we visited my Dad for Sunday lunch and my brother, sister and twenty month old niece also came, which was lovely.

I hadn’t seen my niece since Easter for various reasons; mainly, that she lives with her mum in a different area. She has altered so much in that time and is now walking and talking and starting to grow the most beautiful white blonde curls, just like her daddy at that age. It made me feel a little bit sad that we don’t see her more often and are missing so much, but that’s just the way it has to be for now unfortunately.

As always, she was completely smitten with my fiance, who got far more cuddles than I did, but I’m trying not to take it personally! She was very fast on her feet but for the first time I was able to watch her and pick her up – I’ve always been on crutches in the past.  Thankfully, she’s only tiny for her age and I didn’t struggle too much, but it is always a question tucked away in the back of my mind – would I be able to look after a child myself, with all the lifting and so on? But then I think, I’m sure people with more severe disabilities manage. Famously, there was Alison Lapper, who was limbless because of Thalidomide and she raised a son?

These issues are very much in our minds at the moment and being with my niece obviously made us think about certain things. I know looking after a young child isn’t easy for anyone, physically or emotionally; but particularly for someone with such health problems that Still’s brings. Sleep would be a major concern for me, since I need a lot of it and even after just four hours with my niece, I was exhausted. And that’s with being able to hand her over to my brother to take home when she was tired and cranky and screaming.

But I still think we could do it. We want to do it. And being with my niece made me realise that even more.

Anyway, we had a lovely afternoon and evening and now we’re catching up with X Factor before I grab an early night. If I don’t sleep tonight there is something seriously wrong!

Hope everyone has had a good weekend too,

L

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