My opinion, love Isabel xxx

Dear Doctors,

I know that you have the quality of life debate with many parents and parents-to-be, so I thought it important to let you know what I think on the subject. You see, I know you just see these happy photos of me with my family, enjoying life, going on holidays, but its time you knew the truth and some of the real problems I have in my life.

First of all there’s school. I know it looks like I love my school, and I do, but they close at the weekends and in the holidays. I am NOT happy about that. AND although we have a lot of fun they do make me work hard. They make me work on my standing, my sitting, my balance and stuff – they even make me sign for things like “more” instead of just letting me have it.

And then there’s my brother. Yes I know it looks like he adores me, and I think he does, but when I demand his lego he only gives me the stuff he isn’t playing with. He KNOWS what I really want is the lego models he’s made – what fun I could have bashing them on the table, taking them to bits and exploring all the interesting pieces. But NO, he refuses to let me do that.

But that isn’t the half of it. You see, then there’s my parents. First of all they make me brush my teeth and my hair EVERY day even when I tell them quite clearly that I don’t like it. And, like the other day we were in a cafe and they KNEW I wanted an ice cream but they made me eat my dinner first. And look at tonight. I was happy, just playing in my bath and they said no, its time for bed. They set this ridiculously early bedtime at 7.15 these days when really a girl like me wants to party until at least 11 or 12. And I can’t even do the slightest thing without the whole getting-excited-look-what-Isabels-doing-now-let’s take-ANOTHER-photo malarky. Honestly a girl can’t even go to the LOO in peace.

And then there’s the holidays. Yes, I love them, but really last year I was TOTALLY shortchanged as I only went away for three holidays. Quality of life bah, what IS going on?!

I know you tell some parents that their children will be like vegetables. Honestly, I don’t even LIKE vegetables – which is another thing – they sneak them into my food trying to tell me they are GOOD for me.

So, please, when you are discussing quality of life and all that, make sure my point of view is made loud and clear. As you can see my complaints are TOTALLY different to any other 6 year old, and obviously justify having these long debates about whether to save children like me. Obviously I absolutely know who is boss around here, but I think my mum and dad might be getting a teensy bit frustrated that they keep having to let the medical world know all this stuff, like there’s something special going on.

So if you can just fix that so other people don’t have to fight to let their children live perhaps we can all get together and sort out my ISSUES!!!

In hope always, Isabel 🙂 xx

Ps the photos are just so you know how hard done by I am actually.

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