Saturday, 19 June 2010


Summer, don't you love it? I do but I hate it too as it's the time of year when every one is talking about their holiday plans and counting down the days to departure.

I like hearing about peoples holidays but I can't help but feel totally jealous that they are able to just take off without a care in the world. This is when reality kicks in and I am forced to face facts that my life is anything but normal!

This year I wanted to take Jack and Holly to Disneyland Paris. Holly and I were getting quite excited about it cos we just love it there but then Jack became very ill in October with Aspiration Pneumonia. It was touch and go for a while but he pulled through. Then in March he had to be hospitalised again for Aspiration Pneumonia and for the first time ever, spent his birthday in HDU. (A more detailed blog on that time later I think!)

I think I was in shock as getting pneumonia twice in 6 months is bad, really bad. On the drive home from hospital I broke the news to Holly that I didn't think it was a good idea to go to Paris now as I didn't think I could cope with Jack being ill in a foreign country and them not being able to understand Jack's genetic condition not to mention the language barrier!

So although Jack seems stable at the moment, it is an endless fight to keep his chest clear. Jack also suffers with refractory epilepsy and has often had to be hospitalised for that too.

We desperately need a holiday, just being in a different environment for a change. So now I am trawling the net for something in the uk, just a cottage somewhere but that has disabled facilities ie hoists, disabled shower etc. It's like looking for a needle in a haystack, honestly!

Holly is very good and totally understands but she is disappointed that we are not going to Disneyland Paris this year. I feel gutted that we are not going too but it would be crazy to risk it right now.

So forgive me for feeling jealous my friends when you are all so so excited about your holidays but I do hope you have a lovely time.

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