Dear Alex, WHY??

Tarzan Lola in the garden in France...

4^th December 2012

Dear Alex,

A day at home (I’m coming in after school with the kids), of doing things and washing of catching up and cooking. Mending the washing machine, cupboard door repaired, curtain rail fallen down, and I do it, knots in the pits of my stomach, tightness in my chest, with one word flashing like a Hollywood banner blinking on and off angrily, the word is ‘WHY?’.

Not why has this happened, but why all this surrounding you, why the nightmare, the battle constant and wearing. The things I am trying to facilitate, which should be straightforward. Everything feels like a minefield, I started trying to get over night stays in place at least 4 weeks ago. Everyday I have spent since then trying to find the right team of people, the, then, right person who in fact won’t deal with it because it’s not been referred by the right person yet. Who in turn tells me they can't refer it yet because they had never even heard of you, because the person who was supposed to do it, didn’t, or people wondering how it is that I am ringing because normally it supposed to be someone from the place you're in, or acting on my behalf (who doesn’t exist) it shouldn’t be down to me (poor me!) but they would have to wait till so and so rang them with whatever they were supposed to ring them with… well you can see can't you?? Everyday, for a month I have had this, and just when I felt I was getting somewhere, everything starts all over again as they decide in fact, you need a reassessment, because in the time its taken to get that far, you have deteriorated, regressed, and you’ll need other equipment now as a result…and AGGGRRRRHHHHHHHHHHHHHHHHHHHHHHH!!!!!

I’m physically exhausted- whenever I am with you I am encouraging you, correcting you, helping your position, your posture, telling you to keep your eyes open, they are closed almost all the time these days (I feel as though you've given up). I try and help you with your speech, it's incomprehensible without the right input…and the list goes on. And so I work at you, on you, for you…but it feels like I am getting nowhere, and it all feels like such a race against time as I watch you regressing before my so-deeply-in-love-with-you eyes.

And still no news, nothing about a house…

So I take a second to try and unravel myself from the taught grip of troubles, always trying to take a moment to give thanks. That I have a phone, a paid phone bill which means I can at least make the calls…that I have ears that hear, the ability to speak, hands to dial the numbers! Well, it’s digging deep, but when you think how some people live…

Thank you that you got to come home yesterday, thank you for Mitzi flinging herself in your arms as you pick them up from school for the first time! That your smile at passing the day on our sofa at home, never left your lips…for all these things I give thanks and I am blessed…

But please, please, just a little glimmer…that’s all I am after!

See you with the kids in a few hours...

Me xxxxxxxxxxxxxxxx