Comment: My amazing daughter has Down syndrome - but I believe in the right to choose
My daughter will be 10 years old next month.
After two open-heart surgeries, countless therapies and alarming interventions, we are a decade in and everyone’s still standing. Ten. It feels like an achievement.
She’s having a joint birthday party with a girl in her class. Which also feels like an achievement. Lily-Rose is healthy and she has friends. She doesn’t sit alone at lunchtime.
She laughs fully, with all of her body. She can dress herself and pack her schoolbag. She can’t tell a lie but she does tell jokes. I wish I’d been able to see ahead to now, when she was born. When I was told she had Down syndrome.
I still feel the weight of responsibility, of knowing that I must be her cheerleader and her voice. But I feel the privilege of these things too. The privilege of being her mother and of being loved so openly and honestly by her.
I respect her potential. She can be bossy and stubborn and questioning, but in the best of ways. It’s been remarked to me on more than a few occasions that she’s nobody’s fool. And I agree.
And yet. I am always watching, just in case. I know the world is not only benevolent.
I know too that the news of her birth – of her extra chromosome – was received largely as bad news. There were quiet voices and reverential texts. Very few cards though. Three, actually.
I remember the language of those early days and weeks. Everyone speaking in such gentle tones, every word meant kindly – “You were unlucky” and “I’ll pray for her.”
And of course, “I’m sorry.” A lot of people were sorry. From the doctor, to the nurse, to my relatives. “I’m sorry.”
Precious little of that time was joyful or rousing. What with everyone saying how sorry they were, and the hush that fell around me, it was difficult to shake the feeling that something terribly tragic had happened.
The silence became deafening.
Down syndrome had confused any cause for celebration, for this baby girl’s life. The sheer forever of it, of her, was not to be wished on a new mother.
But that was 10 years ago.
Look at us now! All joint birthday parties and gymnastic camps and making slime. And smiles for miles. We have survived. Thrived.
But last week, I heard those two words again – “I’m sorry” – in that same, familiar tone. Said by a friend, over coffee.
She touched my hand as she said it, and her voice became quieter as she went on. “I didn’t mean in cases like Lily-Rose. I mean in certain other circumstances. I’m really sorry. That was thoughtless of me. I don’t want you to think –” And then silence.
It felt like 2008. Back when everyone was sorry and didn’t know quite what to say.
An embarrassed woman sitting in front of me, self-conscious now for wanting the right to make decisions about her own body, about potential pregnancies, about her family’s future. And apologetic for talking about the Eighth Amendment, the subject on everyone’s lips, in my company. I am a mother of a child with Down syndrome.
I am a woman too close to the subject to hear it.
I am to be protected from the shocking reality of Irish women’s lives and shielded from emotive billboards showing children with almond eyes like my daughter’s, which have been plastered around the city by a campaign claiming to defend them.
I believe the debate about our restrictive reproductive laws is everywhere at the moment – at dinner parties, in workplaces, at school gates. In cases of fatal foetal abnormality. In all cases up until 12 weeks gestation. In no cases. To repeal, or to preserve. To strike out for change, or to keep things as they are; that is the question. The abortion referendum is what’s being talked about now. I see the commentary raging online, and I read about it every day in the newspapers. But I’m not privy to any conversation. I realise that all goes quiet around me.
Silence. It never did us any good in this country.
I want to talk about it. I want to tell you that I’m no more offended on my daughter’s behalf by a woman terminating a pregnancy because the foetus has a chromosomal abnormality than I am offended on behalf of either of my sons by a woman terminating the pregnancy of a ‘normal’ foetus for her own various and personal reasons.
Which is to say – just to be absolutely clear – that I’m not offended at all, because her choice is none of my business.
I never want you to be sorry around me. I never want women to be sorry for fighting and marching and asserting their rights over their own bodies. I never want you to be silent or feel yourself strangled by the possibility of offence. I feel relieved and joyful that this time has come, that the opportunity to remove this amendment will finally be put to the Irish people.
The possibility of no more hush, no more hiding, no more exporting our pregnant sisters and daughters to convenient neighbouring countries, and no more feeling awkwardly sorry about it is exhilarating to me.
I trust the women of this country. I will be voting to repeal the Eighth Amendment so that they can confidently use their own voices and make their own choices.
Justine Delaney Wilson is a novelist. Her book, The Difference (Hachette) deals with the topic of having a child with Down’s syndrome