Down Side Up
"Concentrate on things your disability doesn't prevent you doing well, and don't regret the things it interferes with. Don't be disabled in spirit as well as physically."
Stephen Hawking
Last Wednesday was World Down Syndrome Day - if I'm honest I missed it.
It only really came to my attention yesterday through a social media and then again this morning when the Beeb ran an article highlighting a video featuring 50 mums with their Down Syndrome Kids rocking a carpool karaoke version of Christina Perri's, “A Thousand Years”.
To say it’s beautiful is an understatement, here it is;
Whilst searching for something to write about Down Syndrome I came across the transcript of a Ted Talk presented by Hayley Goleniowska, the author of the well known blog Downs Side Up.
This is her story;
Overcoming the Fear of Down's Syndrome
This is my personal and sometimes emotional story. Yet in many ways it’s an ordinary story too, with elements which may be shared by many of you.
11 years ago, I was expecting our second, much-wanted baby. The one we’d imagined in our mind’s eye, the one who’d clung to pregnancy as so many before her had not.
So big girl Mia and I toddled and waddled around, chattering about the new baby in Mummy’s tummy, as we washed and folded tiny clothing in anticipation.
We "didn’t care what the sex of the baby was, as long as it was healthy", and naively we thought that was all that was important.
Scans, expensive multivitamins and a doula on stand-by had bought us the ‘peace of mind’ we thought we needed.
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Two weeks before her Christmas due date, our youngest decided to make an early entrance into the world and we calmly put our plans for a home birth into action.
Mia went to stay with her beloved Godmother, and Bob warmed our draughty old house... and for some reason took it upon himself to spread industrial plastic sheeting over all the furniture. I'm not really sure what he was expecting - presumably some kind of ‘baby cannon’ 😮
A nest of pillows and gentle words of encouragement welcomed our little one into the world.
She arrived easily, all at once, but floppy, silent, and blue.
There was panic in the air from the professionals. Or maybe looking back it was ‘urgency’. An Emergency.
My mind froze, I was unable to ask a question, my subconscious was doing what it felt best to protect me.
Bob waited in his shorts in a freezing December lane for the ambulance he’d been instructed to call, but it wasn’t just his breath that froze, time too stood still as he waited for medical assistance, not knowing whether his newborn was clinging to life inside the family home.
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On arrival at the hospital, Bob proudly carried our baby in from the ambulance, where she was taken to NICU so that teams could work to stabilise her. He insisted on staying nearby and I was left in a side room with our doula to recover from the birth.
After a while I began to realise that I was being avoided. Midwives’ floated through my space attempting jovial small talk and wearing that kind of smile people use when they feel sorry for you… Or, when they are nervous about telling you some unexpected news. It had to bad news?
A desperate panic steadily rose in me. I urgently asked: Was she alive? What was wrong? Where was my husband?
After what seemed like an eternity but was probably around 5 hours, we were finally rejoined, in that clinical maternity room, distant and physically removed from our precious baby. A consultant arrived and formally uttered the words we had dared not allow ourselves to contemplate:
‘I’ve looked at your baby… and I think she has Down’s syndrome… ‘
Our midwife cried.
(A congenital heart condition was later identified, the cause of her early fragility.)
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At this point my body went into physical shock, but my brain went into overdrive:
Had I forgotten to take a vital supplement?
Was it my age, or the shell-on prawns I’d craved?
It had to be my fault after all.
- I was consumed with wanting to know what the impact on Mia would be.
- Would her daddy leave us?
- Would we ever have another family holiday?
- Would she marry?
- Would she even go to school?
- I imagined she’d be forever quiet and ignored, wearing a uniform of a Mickey Mouse T shirt, glasses that slipped to the end of her nose and a national health haircut J?!
My ableist subconscience had taken over.
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It’s important to pick through why and how I came to feel this all-consuming fear, because I was so very wrong.
As a society we have created a tragic myth with a protagonist called ‘Down’.
Medics say they are "sorry" as they tell us "probabilities of risk" for our baby having Down’s syndrome and describe the condition as a list of medical characteristics which they like to cheerily call co-morbidities.
When pregnant, we women pass the baton of fear from one to another without any real lived experience.
Our society either pities, patronises or punishes those with a disability, and the mainstream media depict Down’s syndrome like a cancer to be eradicated.
And, in my case, there was the distant, and slightly unsure memory of my grandmother, Gladys steering me across the street as a young man with Down’s syndrome and his mother walked towards us, their heads bent in realisation of what was happening...
‘He’s not quite all there…’ I think she whispered.
Words shape our thinking and the picture painted for me was certainly one of no hope.
Not because of an additional chromosome, but because of a constrictive narrative created around that one aspect of our baby's being.
It stole the unconditional element of my love. I decided that if I could somehow not love our baby with all my heart, then I would be spared the pain I imagined I would feel if we lost her.
It took a wise midwife to tell me to pour that love out, because our baby needed it whether she lived or died.
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That midwife was the first of a safety net that was immediately thrown around us by those who cared…
NOT the folk who told me special babies are only born to special parents… or that God wouldn’t have given me any more than I could handle!
Nor those who taught me the hard way that this is a condition everyone has an opinion about. And that even though you don’t ask for their outdated nuggets of misinformation – you will get them, mostly within the first weeks of your baby’s life:
“Ah, they’re so cute, musical and loving. I wish I had one.” ( I wonder if that person has ever heard Natty sing! Or if she's bought herself a puppy)
“Babies with Down’s syndrome struggle to breastfeed but don’t worry, your milk will soon dry up after the shock you’ve had anyway.” (Natty did learn to feed after 3 months of expressed milk through a nasogastric tube.)
“One lived up my road and died when he was 40. That’s really old for them you know!”
(It wasn't appropriate to discuss the life expectancy of my newborn, and also the figure is into the 60s these days with many people with Down's syndrome living into their 70s with the right care and support.
And the comment that still stings from a pregnant acquaintance who proudly announced, while pointing at Natty in a pushchair; “I’m having all the tests going, ‘cos I wouldn’t have time for one of them.”
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Sorry, I digress, No - the true mentors were wise parents further along our journey who told us it would be OK.
Family such as my Mum and brother who drove through the night to be with us.
Friends who turned up uninvited with food to cook us a meal and celebrate our baby’s arrival, while others faded away, not knowing what to say.
The medical angels who not only saved Natty’s life but helped us believe we could do this, (usually during late night chats over mugs of milky tea.)
But the greatest of all teachers of course have been big sister Mia, and Natalia herself. Natalia Hope as we decided to call her.
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These 2 small children dismantled our fear and replaced it with oodles of love, pride and acceptance.
Natty of course was unaware of the stigma strapped to her genetic makeup and she melted our hearts in her own inimitable way.
The words Down’s syndrome weren’t laiden with any meaning for Mia and her only question at two was when her baby sister was coming home from hospital so she could help me bath her for the first time.
These two girls had an immediate bond and whilst I was trying to map Natty’s entire life in her first weeks of being in our world, they took each moment as it came.
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Together we have learnt that Down’s syndrome is:
- Beautiful (Natty was to become one of the UKs first models with a disability, featuring in a national supermarket back to school campaign 3 years ago),
- Caring (Natty just knows when someone needs her wisdom. Like offering a knowing calm smile, a hand on the knee and ‘it’s OK’ to me this morning.)
- Brutally honest with hilariously funny outcomes (“I like your breasts” “The lady has a nice dress you say?” “No Mummy, I said nice breasts.”)
- Determined and inventive. Natty took longer to reach milestones but her favourite phrase is ‘I can do it BY myself”. Before Natty could say I Love You she made up the signed phrase "You happy me" using Makaton.)
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Of course there have been challenges. Natty underwent keyhole heart surgery at the age of two, the most terrifying time of our lives.
Natty is also small for her age and needs support when communicating, but what we have learnt is that very little will prevent her from being the best she can be when given the right opportunities and when the limits that exist in others’ minds are lifted.
Natty is not ‘inspiring’ or ‘special’, but she is an essential part of our family which makes me reassess what we all value in one another.
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Why is IQ so much more important than EQ (emotional intelligence)?
In the perfect blend, surely there is a role for everyone in society, so the ability to pass exams with flying colours and the skill required to make a room erupt with laughter with a silly dance, a funny expression and a well-timed comedy fart, should be equally revered!
What frightens me is that I might have missed out on being a Mum to such an incredible little girl, that this might not have been what I 'chose' to sign up for.
And more than anything I wish that grandma Gladys had lived to meet Natty.
She’d be boasting to all who’d listen about her great grandchildrens’ achievements, and their photos would be displayed proudly on her wall.
She would have gloated over how they all took after her in some way or another and her life would have been enriched by having each of them in it.
But most of all I know that Natty would have taught her not to fear those on the other side of the road...
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No pictures today – this is my World Down Syndrome Day. To celebrate and yes, I think celebrate is the right word, please find below three videos that have inspired me that have been published as part of the #WhatIBringToMyCommunity campaign;
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