Children are great about being brave aren’t they? They often seem to have no fear and rush into life and through life with a wanton abandon; living in then moment, without a care in the world. And really a happy childhood should be like that shouldn’t it?
But often at some point in our childhood, we all develop a fear. Something scares us and freaks us out and whenever that thing is viewed, talked of, experienced, it puts a fear in us which is so very irrational but so very real. Spiders, snakes, “monsters” (I love Monsters Inc. don’t you?)….
For me it was clowns. I was two years old, we were on holiday on the Isle of Wight and I remember clown faces clinging to the outer perimeter fence of a funfair. My earliest memory is climbing into my parents bed in a caravan on the Isle of Wight because I was having nightmares over those freaky clowns.
Oh and the Diddy Men….
True - I was scared of Ken Dodd’s Diddy Men…..for me, Room 101 would contain Dickie Mint and his Jam Buttie Mines and every clown in town!
But for many children, and on into adulthood, it’s something else, something sinister, something which invades our lives every single day, silently approaching, encroaching with every minute which goes by, keeping us awake when we want to sleep……
Who’s afraid of the dark?
Well, now I mention it, who is afraid of the dark? Really? Are you sure? Darkness is really just the absence of light isn’t it? I seek permission to suggest that actually those who claim to be afraid of the dark are not afraid of the dark at all.
Don’t argue back just yet, let me finish my theorising…
No, let’s go back to Sully & Mike – our favourite monsters in the film Monsters Inc. They used the cover of darkness to slip into a child’s bedroom to scare them and thus obtain the highly prized “scream” to help power their city.
Seriously if you haven’t seen it just where have you been?
Nobody is really scared of the dark; they’re scared of what is lurking under the cover of darkness, that which can't be seen. When we can't see something our imagination replaces the void with what we think it might look like. And the imagination is a powerful, powerful thing. A tool of extreme value and purpose to the writer, the poet, the artist, the musician. It can conjure up the most beautiful of images - the Seychelles - most of you reading this will never have been to The Seychelles but I'd like to suggest that approximately 10 seconds ago you saw something in your imagination which pictured what you think The Seychelles looks like. It's a powerful thing.
But that power can also be destructive. We can imagine people are out to get us just because there was a knock at the door, we can drift off into dark thoughts and moods brought on by a conversation which we've taken out of context and we imagine things are a lot worse than they really are.
So we lie in bed, it’s quiet, it’s still, it’s dark, very dark.
“What was that bang? That creak? Why has the room gone cold? Did you hear that?”
Before we know what’s what we’ve got a mad axe murderer coming up the stairs but we’re frozen to our spot, we let the irrational fear go on. It’s no coincidence that so many panic attacks happen at night. Eventually we either fall asleep or shout for help and someone comes to turn the light on.
So who’s afraid of the dark?
Who’s afraid of Down’s syndrome?
Really? Are you sure? Or is it just that you’re afraid of what’s lurking under the Down’s syndrome covers. Are you afraid of what you don’t know? The darkness? Afraid of what you can’t see? Afraid of the future?
What is your imagination doing? In the darkness, it's conjured up a picture painted by words of negativity, cold, clinical words which you never expected to hear and can't quite comprehend but you know it suddenly feels difficult to breath, you're feeling light-headed and the walls are closing in.
You want to shout for help. You open your mouth but no sound can escape.
It's a powerful thing, the imagination.
You know what, if there’s going to be pre-natal testing, it’s better that there’s a non-invasive test. Better for mum; better for baby. So hurrah for the new non-invasive pre-natal test.
But (there's always a but and mine's a particularly big one!) we have to be so careful about where a positive diagnosis of Trisomy 21 takes us. Any screening, testing and detecting for Down’s syndrome, or other genetic conditions, must go hand in hand with accurate, balanced, information and education which doesn’t leave parents afraid of the dark.
I skipped over to the NHS website earlier to see what they say about Down’s syndrome. Here’s what I found:
Down's syndrome, also known as Down syndrome, is a genetic condition that typically causes some level of learning disability and characteristic physical features.
Around 775 babies are born with the condition each year in England and Wales.
Many babies born with Down's syndrome are diagnosed with the condition after birth and are likely to have:
· reduced muscle tone leading to floppiness (hypotonia)
· eyes that slant upwards and outwards
· a small mouth with a protruding tongue
· a flat back of the head
· a below average weight and length at birth
Although children with Down's syndrome share some common physical characteristics, they do not all look the same. A child with Down's syndrome will look more like their mother, father or other family members than other children with the syndrome.
People with Down's syndrome also vary in personality and ability. Everyone born with Down's syndrome will have a degree of learning disability, but the level of disability will be different for each individual.
Bearing in mind this is an introduction and meant for patients, it’s all a but cold don’t you think? Science wins out over humanity. So what’s the next heading:
Screening for Down’s syndrome (science again)
What causes Down’s syndrome (more science)
Life with Down’s syndrome – oh look boys and girls a little bit of humanity; a snapshot of real life and positivity. A bit late though if you never got this far because the first three sections of cold facts scared you silly (scream gathered, more power for the scientists).
(Yes NHS I’m more than happy to re-write it if you want me to!)
A midwife recently asked me on twitter “but surely in the UK in 2015 we welcome and defend women’s autonomy over their own body?”
My response would be that in the UK in 2015 we should welcome and defend the rights of everyone to receive balanced, accurate information and education about what having a child with Down’s syndrome really means before being asked to come to any conclusion about whether a pregnancy will continue or not.
Right now, these decisions are being made in the dark, where it’s lonely and scary and horrible and it’s all a bit of a nightmare. Not even any time to shout for help.
The clowns are coming to get you...
The mad axe murderer is near the top of the stairs...
What you going to do?
IT’S TIME THE NHS AND MEDICAL PROFESSION WORKED ALONGSIDE PARENTS TO TURN THE LIGHT ON!!