Dear future new mum

Congratulations! Your beautiful daughter is here.

Everyone is waiting excitedly to hear the news that you have had your baby, how much she weighs, her name, a photo… And you want to tell them, you want to tell them how wonderful she is, how she smells of vanilla and toast, how your heart is struggling to contain the love – but you don’t know how.

Because you also have to tell them that your beloved, tiny daughter has Down syndrome, which you only discovered in the moments after she was born, earlier today.

Your family are Kenyans of Indian descent, and in your mother tongue of Gujarati, there is no word for Down syndrome. There lingers a cultural fear of anyone with any kind of learning difficulty or disability. The words used to describe them are hard, unkind.
How do you find a word in your language that doesn’t exist? How will people react? You are afraid of their suspicion, and blame.

You are determined to celebrate your daughter. You love everything she is. You tell people. Some don’t bat an eyelid and relief floods you, but others – well.

Your logical, correct brain reminds you that you having a baby with Down syndrome is not linked to superstition, religion or what you ate when pregnant. It’s not a problem and so it’s nobody’s ‘fault’. Your baby is your baby. At the point of conception, the sperm met the egg, and an extra chromosome was added into the mix. That was the reason your baby has Down syndrome, a chance and nothing more.

But extended family drop round, unfiltered, and blunt as ever – a part of the Hindu background you’ve always valued, but not today.

‘Didn’t you get tested when you were pregnant?’
‘Did you eat a bad diet?’
‘Don’t worry, they can cure anything these days.’
‘I’ll talk to the priest to see if there is a ritual that will help.’
‘She looks nearly normal.’

And the older they are, the more likely they will not understand, that their inherited ignorance will dig further into your heart to make you feel like you’ve done nothing right and everything wrong.

You will feel exhausted and overwhelmed.

Hang in there. Things will change. You will change. Now you sit in silence, in pain, not knowing what to say. But soon, the ferocity of your love for your daughter will rise up and start to roar. You will become your baby’s voice and you will find the strength to speak out, and to keep speaking out.

You will become your child’s biggest advocate. You will correct people – firmly but politely! – and inform them of the facts. You will make new friends and be amazed by the support and understanding from places and people you hadn’t known existed. You will marvel at your daughter’s achievements and want the world to know her as you do.

So, congratulations, lucky new mum. You and your daughter will be the ones to break down stereotypes and challenge ignorance. And this little girl, who looks at you with such love and trust, will be the one to teach you who you are, show you your strength, and give you your voice.

Written by Toral, Civil Servant, mum to Niara