Come in....

The time is 11:45 last night and I am inviting you into our bedroom. This is what you see.  (no, sadly the guy in the picture isn't me!)

Helen is lying the wrong way round on the bed, head where her feet should be. The reason? That bedside cabinet on the right is full of nail varnish, nail varnish Emilie found and tipped out into the top drawer. The smell pervades the room, but is particularly strong where Helen's head should be. I try and breath through my ears.

The floor is strewn with clothes. You noticed that, huh? Thought we lived like slobs, perhaps? Well Emilie needs clothes on the floor to feel secure for some reason only autism can explain. Look behind you - the landing is the same. Of course you are a privileged visitor, you don't normally see this, those of you who know us in real life might have noticed we never let you upstairs. Now you know why - although the toilet can be pretty scary too!

Back in the bedroom. You will have noticed by now that there is the sound of a mountain stream, rushing and gushing. Even Emilie can't divert a stream through our house, although she once brought down the kitchen ceiling by blocking the bath overflow with Tinky Winky (or was it Dipsy?) The sound is of-course coming from the stereo next to Lucie's bed, where she lies with industrial (literally) ear-phones on. The stream CD and ear-phones mask some of the sounds of Em as she shouts delightedly in the room next door, still bouncing on her bed. As you know, the children are made anxious by each other, this is why we want to convert the garage into a bedsit for Lucie, to keep them truly apart and lower their stress levels. Lucie sleeps in our room because she got frightened on her own in the study. She went there to escape the noise of her sister, we even brought her bed down and converted my study - which is why I'm typing this from furniture with heart-shaped motifs! Her epilepsy is another reason for keeping her close. Her original bedroom stands empty. Logic has no role to play in this house!

Me? Yes, that is me in the corner. You can only see my lower half poking out behind the curtain). I am shining a torch into the front garden, watching our beloved and much spoiled (special food, water, hogitat) hedgehogs playing in the garden. Sometimes I wish I were a hedgehog. Anything but this day after day, night after night.

Yes - Helen and I are shattered. Not through any single incident, these summer holidays have been remarkably incident free, just the one epileptic fit for Lucie and even that happened at the Glen. We are shattered because caring, quite simply, is bloody hard work. The repeating the same conversations over and over. Keys being stolen and hidden in the garage, us having to search. The dealing with Lucie's anxiety about things we cannot change and watching her tremble as a result. Emi getting distressed because the primary school clothes (two years old now) no longer fit and replacements cannot be bought. The smell of nail varnish, the smell or poo. The blocked toilet (more bastard teletubbies, I suspect!). The constant pressure of watching the children cause each other distress just by their presence. Emi comes downstairs, Lucie immediately marches upstairs. Lucie spending all her time in a small wooden summerhouse and Em seeing this as excluding her from the garden. All of us trapped in the house, slowly driving each other insane.

Yesterday, I asked Helen to sum up in one word what parenting our two daughters is like. You will understand here that it was the end of the day and we were both exhausted. The words we chose were not what we really think - human emotions react temporary circumstance, not just reality. But I chose, 'futile', Helen - 'unbearable.'

You see, tiredness is a funny thing, there are moments when you almost 'hate' your child. Hate how they demand so much, until you are on your knees and then they demand twice as much. Last night for instance:

Back in the bedroom, it is 11:50pm, I feel a little less stressed now and no longer need hedgehogs. Back in bed, head next to Helen's feet I start to unwind, you watch me close my eyes.

BANG!

Emilie bursts through the door - lights are switched on, Helen jolts awake, so does Lucie. Apparently, Em's toy shark has run out of batteries - she is distressed and demanding it be sorted.

'Shark broken, shark broken, shark broken' - she complains loudly in her strange monotone. Lucie clamps her ear phones tighter.

I immediately pray there are some batteries in the kitchen drawer otherwise she won't settle and a midnight trip to a late-opening garage awaits. Like I say, you can hate them. Hate them in that moment. They ask so much. So often.

But really you don't hate them.

This morning I am refreshed (batteries indeed there were) and you appear to be still in our bedroom! As the light streams in through the curtains and the hedgehogs sleep, you see me looking refreshed, ready for a new day. I look across at the still sleeping Lucie and smile, a smile all parents will recognise.

How can you not love them? For all the trials, the nail polish and exhaustion - we love them and are (no false sentiment here, we mean it), privileged to be their parents. They give us so much - just in different ways.

Not that I'd want it to be six weeks ago, mind you..........not for all the nail polish in China!

Thanks as always for reading.


Mark.