hands

a glimpse of sunshine ...

A short glimpse of sunshine to brighten a cold winter morning.

My daughter brings her two sons through to our bedroom.  I haul eldest aboard, and he waits expectantly for the first biscuit of the day.  Each morning for the last three weeks it's been the same ritual.  The muffled footsteps of a sleep-suited toddler, the warming comfort of a hot mug of tea and then the book.   "My Grandpa is AMAZING!"

We've read it together these past three weeks until we both know it by heart.  He even knows the page on which to find the tiny mouse.  "Eeek, eeek!", and the second biscuit of the day is consumed.

And then Twitch arrives.  He's smiling, he's moving ... he's alive. Had you asked me a month ago if he would see Christmas, then I would shake my head sadly.  Yet he is very much here - a glimpse of sunshine on a thin, wintery morning.

Autumn Leaves

Returning home

I hold him in my hands and rock him to sleep, a spine curved now relaxed.  We are safe here in dreams.  I sway from side to side and sing a low Northern lullaby.  And tears of joy form.

I hold him in my arms, and he fits.  My daughter scoops up his drugs from the young nurse and we return home.

"I can sort it,"  she says.

And she does.  She reaches for a pad of paper and a pencil, and fifteen minutes later she's sorted a Drug Programme, administered five separate medications and is feeding him.  Immense.

I am in the hospital with my daughter, a chattering TV screen sequined and dancing on a Saturday night.  My daughter danced once.  I want her so dearly to dance again.

He fits, once more.  The nurse comes and times him home.  Eyes rolling and shrieks, then he's back with us.

Twitch

by the light

the twitch texts - vol. 4

my daughter

Looks like twitch might be let out today!  Yeah! Just got to see the expert n discuss a plan of action.  What are the odds?

my daughter

The vampires are out to get him.  They want his blood!

my friend, Ric

Hi.  Just wanted to see how it's going. Ric

my daughter

Twitch successfully registered.  Just picking up little lamper now and then home.  G is already there.

my daughter

Well twitch has had a week of being at home and has been doing really well until the doctors decided to mess with his medication.  He has started fitting again.  Just got to see how they want to change his medicine.

my daughter

I think they got bored with us here.  Off to addenbrookes on mon if they have a bed for us.

my daughter

Well twitch is so excited about going to addenbrookes that he is trying to beat his record number of fits in a day.  So far we are on 12 and his record is 14.  Lets hope the extra meds kick in soon.

my daugher

Looks like the doctors really like the pictures twitch draws with his brain.  Addenbrookes want to see them 2 so another eeg it is.  They also dont think he is enough of a druggie so more medication as well.  At least he wont need to dabble with drugs when he is older, he will already have the tee shirt!

my daughter

What a performer.  Sleep, fits and awake time on the eeg.  What a good boy!

my daughter

The hospital have a new tactic.  Turn twitch luminous!  His medicine is bright yellow and stains everything it touches, clothes and skin.  Twitch has a lovely shade of lipstick at the minute.

We dream endlessly of flight ....