They did not ask about
nor did they see
the quiet agony she carried
day to day
They did not feel her pain
her sleepless nights
her bitten nails, her anxiety
They strode along and talked
their talk of fancy
tea and cakes they shared
They did not see her
isolation and her fear
that one day her children
would not be here
They did not mention
her desperation, her unkempt hair
the circles dark below
her hollow eyes
They did not hear her
silent scream nor smell
the stench of broken dreams and friendships
she once had
They did not know and yet
they said how well
she coped and muttered empty promises
they did not keep
And when the circus had all but left
they looked around aghast it happened here
in their backyard with tidy lawns
and sculptured trees
We did not know
she never said.
Learning Disability Week. I have tried rolling the label, learning disability, around in my head but it seems oddly unnatural, like a man made fibre, synthetic, discordant and contrived. I tried saying it out loud to my daughter, she shrugged in a non plussed kind of way, if she could talk she might have said, ‘whatever’
I never think of my daughter as having a learning disability. She is just herself, kooky, funny and pretty. Read More…
‘I quite like angry parents, you used to be angry Linnet’
She was right. I used to be angry with the system nearly all the time but now I am angry only some of the time.
I used to be angry, defeated and exhausted. Then people started listening, then they started trusting and now they have start believing that all I ever want is what is best for my daughter. So now I still get angry but I only get angry some of the time. Read More…
A strange thing happened yesterday. We had a meeting round my kitchen table to fill in a form.
There were four of us, from health, education, social services, and me.
Most of the form we crossed out, some of it was described as bollocks and someone asked who was it for anyway?
My daughters plans were simply described in one sentence to live her life as fully as possible and to continue to try out new things that would make her happy.
How Mr Mark Neary would have marvelled.
I am still in shock.
An article I wrote for the Times in September last year… my cafe dream hasn’t quite taken off but neither I am afraid has much else…
Remember they can’t all be Paralympians
I have always loved the Olympics. I watched through the night as a child and believed one day I too could run like the wind. So when they came to my home town, I cried when Mo Farah took gold and despaired when Mark Cavendish missed his medal. I vowed it wasn’t too late to put on my running shoes, dust off my bike, swim open water in the ponds — but resolutions don’t make champions. The Paralympics were something else. I had excited texts from friends, exalting in the atmosphere and soaking up the positivity. Many left the stadium talking of the impact of the Paralympics, saying it had changed their perception of disabled people and that there must be a long-lasting legacy in our society. Sadly, my family could not join them at the Games, since wheelchair users could only have one person with them and my daughter — who has profound and multiple disabilities — needs two on such expeditions. But I desperately hope these optimists are proved right. I want the world to change from a place where my daughter lives in the shadows of society, relying on me to fight for her most basic human rights. I want that positive energy harnessed and used to make things better not just for my daughter but for all the ordinary people who happen to be in wheelchairs but will never be superhuman, in the way that I will never be an Olympian. Read More…
The light breeze caught the pale linen curtains, the dawn chorus reached its peak, the sound of giggling came through the painted floor boards from the room below. My gorgeous daughter awoke at 5.30 and started her day with some energetic bouncing, small white limbs rhythmically pulsing, head bobbing and abs contracting.
It took a few more hours till I crawled down stairs, hair rumpled, face creased and dressing gown drawn. Two cups of strong coffee and an incomplete crossword later the screaming started, the seizure began. 20mg of diazepam and 30 minutes later it came to a stop. My daughter lay spent in her little bed. Cath Kidston duvet covering and dolly cuddled, she slept. Read More…
Often in the last 2 years I have stood in rooms full of people and talked about how my daughters personal health budget has not just changed her life but changed mine too.
I was brought up in a Scottish village close to nowhere, with a view over a flat top island, silver sands, and stunning sunsets when the sky turns bronze and burnished red. A place to roam free with bikes and dens and burns, sunburned noses and freckles in the summer, wellies and woolly hats in the winter. There was one school, two churches, three pubs, endless skies, soaring seagulls and salty storms. Lobsters crawled from pots across kitchen floors, errant dogs chased sheep, and bog myrtle, sea pinks and rowan berries marked the seasons. Read More…
At Naidex last week, in a flourescent-lit aircraft hanger of a room where the air didn’t move and the colours were bright, a strangely populated world of men in suits, hi-tech wheelchairs, bolshie youth, endearing smiles and earnest faces mingled.
I was only there for the day helping out at the Peoplehub stall, a community interest company set up by people with or interested in personal health budgets. With the help of a few notepads and some Crackerjack-style pens the conversations flowed. Read More…
Why is it 19 years after my daughter first started having seizures that I am at a loss to be honest when people ask the simple question,’ So how is your daughter?’
I run through my range of responses: the downright dishonest, ’ yes, good thanks’ or the ambiguous, ‘just the same as usual’ or the deflection,‘not too bad but I heard you have had terrible flu’ or the little bit more honest, ‘ oh yes, she’s had an awful seizure,’ followed up with the reassuring, ‘but she’s just gone out to yoga tonight’ or the downright disingenuous, ‘ a little bit peaky’. Read More…
April has started with a whimper not a bang, strangled by greyness, crippled by cold and compounded by welfare, death and orphanages. That’s what the view from the hill looked like this week.
Maybe I should stop following the news, switch off twitter and bury my head in fiction and films. Maybe I should stop running and try slow walking, take a long bath rather than a quick shower and fill my days crocheting, gardening or baking. After all it might do as much good as looking at the world and watching things get worse. Read More…