Dear Alex, Today...

12 th June 2013




Dear Alex,



We wake, the kids and I, the alarm startles me after a night of tossing and turning with nightmares and cold sweats.

I want the world to stop.

Breakfast complete, four kids dressed and ready for the school run. I stay in and help out in Esmie's class for an hour before putting my foot down and getting to you. You call after requesting the carer ring me on repeat since you woke. I tell you I am nearly there...

When I arrive you have astonishingly calmed down. You seem extremely tired, your voice croaky from crying for the hours since you woke. Three hours they inform me.

But whilst I am there I get through, we talk and I find Alex, the Alex from before this period of time began. Eventually after I give you a massage and you get I get you into bed you are still calm, peaceful almost lying there and tiredness washes over me. I lean over and kiss your almost sleeping head.

'I'm going to pick up the kids now, I'm back as soon as I can be in in the morning'

'Ok,' you say drowsily, a soft smile on your lips.

'See you tomorrow, I love you, will you marry me and have my children?'

'What more kids?' I ask laughing, you smile a big smile, eyes closed

'Yeah!'

'We'll discuss it again tomorrow ok?!'

And I leave satisfied.

I drive back for the school run, getting flashed for speeding on my return. Not hugely speeding, 3 miles over the 40 mph limit, but I know I am done.

I have 20 minutes before school pickup and prepare the picnic tea for the kids.

We get home at 3.40 and are back out within 10 minutes for Lola's dance class. Popping into town whilst we wait for her with the others I get milk.

Then the 3 big kids have St John's ambulance training. On returning to the house, a tidy up, time doing puzzles, a bath and reading with Esmie. Picking up again and arriving home at just before 8.

They're in bed, in their sleeping bags camping on the floor in my bedroom that sleeps us all.

Calling the care home I hear you are asleep finally, finally after 6 phone calls to me from the care, again at your insistence and me unable to calm you via the phone.

Washing and dishwasher and putting clothes away, a final tidy and I crash.

A lavender tea to hand, pillow doused in lavender oil I hope to sleep better tonight...

I relaxed a while with you today as you were calm, I thought to myself 'is this it? Is this all over? Have you finally come through this time?'

Only to be called so many times with you unable to talk, too distressed.

Back to where we have been for 6 long and lonely weeks now...

And I want the world to shut tonight.


Just for one night.

But I know I have to keep on doing this, hoping we are not here forever...


I'm back in for a crisis meeting about you tomorrow, where the neurologist, nurse, carers, we all shall be present in the hope someone can shed some light.. That somehow, someone can do something.



Me xxxxxxxxxxxxxx

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