The Day The Roof Fell In And I Saw The Sky

Mrs Darling had a ‘perfectly conspicuous’ kiss in the corner of her mouth that everyone wanted but no one could get. No one, that is, but the extraordinary Peter Pan. I wanted that kiss, for my life to be deemed so extraordinary that I was worthy of it. Suppressed deep in the dungeons of childhood desires, I had a longing that there would be something special in store for me. Something more.

I searched the usual building blocks of adult life for that kiss; career, love, material belongings and friendships before arriving at parenthood. Perhaps it was a ‘mother thing’. Maybe if I were a mother, like Mrs Darling, I would feel that kiss, that something special.

To carry a child is an incredible thing, the pure elements of chance and timing. How quickly tiny cells can turn into a perfect little person. Then to hold that tiny human in your arms is breathtaking. So breathtaking, my husband and I signed up for another shot.

Bombshell.

‘He doesn’t look right.’ My husband said. I look at my husband. How dare he say such a horrible thing. But there is an uneasy shifting inside me like the crack of expanding wood in the heat. The baby has been given a perfect bill of health and yet something is off. The midwives haven’t said a thing. But we know. Give a pedantic father access to Google, and thirty minutes later, a diagnosis: Down’s Syndrome. The roof crashes down on top of me and the air is pressed from my lungs.

‘Low set ears, almond eyes, single palmar crease.’

I want to yell, ‘Stop pointing out the markers!'

Because maybe my husband is wrong. Maybe the internet is wrong.

They are not wrong. I know they are not wrong. I do not want this. I cannot do this. I am not the woman with a disabled child. I long for the baby I lost. The little boy with blonde ringlets, the one I’d imagined. I do not want this dark-haired imposter.

The white coat says, ‘These people can lead healthy, fulfilling lives.’

The hairs on my neck prickle. These people? Had I unknowingly given birth to a different species?

In the next breath, the white coat talks about congenital heart failure. He says, ‘Some patients show no outward signs of a fatal defect and their death can be very sudden.’ I do not hear any more. I am confused and scared and angry and sad. I am buried in the rubble of the life I thought we’d built. It’s too heavy and I can’t move.

‘I don’t want him.’ I tell my husband in the car.

He laughs. ‘If you still feel the same in six months, we’ll do something about it then.’

I feed and pass the baby to my husband. He changes the nappies. Through the wall, I hear him talking and laughing. He sings the baby to sleep. I roll over and hope it is all a bad dream. Three days on hold.

Three days and then I try to read the sonographer’s facial expressions as if the whole world hangs in the balance. Mine does. The future of my family is written there. The tiny infant’s chest is heaving as they pass a gel-covered probe over his ribs. Every flicker on the woman’s face is as indecipherable as the pulsing images on the screen. Then she turns to us.

Breathe.

Testing complete. We’re in the clear. His heart has two holes, but he is strong. I get to keep my baby. I sit in the rubble with my son in my arms and look around wondering how on earth to move forward now. Onwards and greet the world, we must.

Then comes ‘sorry’ in solemn tones. I understand. There are often tears. Nobody says, ‘Wow, Down’s Syndrome! Congratulations!’ Gradually our world changes. No, our world expands. We are embraced with open arms into a secret society – an elite club – like long lost family members. Nobody told us about this club, or that one little extra chromosome would open up a world of love, friendship and opportunity.

I start to see beyond the broken rafters. My boy – not the blonde imposter from my imagination – my real boy with his auburn curls and almond-shaped eyes is a heart thief. He turns me to look outwards and onwards, and I start to realise that actually, things are more the same than different. My boy will dance to his own rhythm irrespective of the future I envisage for him – just more blatantly than other children who sneakily swap out their parents' dreams for their own.

Our boy is extraordinary. He is the child I never knew I always wanted. There is no tragedy here. There was no horrific accident, no fault, no blame. He is who he has always been. His extra chromosome does not define him, nor does his ability. He brings a new timbre to our family. With him we live, we grow, we dream.

Now, I feel privy to a beautiful little secret only a few are lucky enough to hear the whisper of. It’s extraordinary.

I have got Mrs Darling’s kiss. It’s not being a mother – that’s an equally wonderful kiss of a whole other nature. Nor is it that extra chromosome that has brought us more than we ever expected. It is when something hits you so hard it turns your head and you suddenly realise you’ve been walking with your eyes closed. And when you open them…

The roof may have fallen in, but let me tell you, from where I’m standing the sky is beautiful.