‘I felt my life close in around me’: Irish mum’s honest account on having a child with Down Syndrome

When her daughter was born, Justine Delaney Wilson admits she didn’t feel ‘proud’ like she had when her two boys came into the world. Here the mum of three gives an honest account of what it’s like living with Down Syndrome

A few people say hello to me or nod, knowing they recognise me somehow. But they can’t quite place me because something is missing. What’s missing is my daughter, Lily-Rose. Everybody knows her, because she has Down Syndrome and, unlike other disabilities, it’s written all over her face. So people look at her and then they look at me, and we fit together. But when they see me without her, like today, I’m a different version of myself – familiar, but they’re not sure why.

When the doctor in the maternity hospital told us that Lily-Rose had Down Syndrome, I felt my life close in around me. It was March 2008. He delivered this bombshell with horrifying glibness, muttering about statistics and probability and somebody having to be the unlucky one. I wondered if he meant me or her.

I had no experience of the condition and my views were outdated. Actually, I don’t think I had any views on it. I hadn’t ever needed to. I thought of the group of badly dressed men and women I saw being led around a shopping mall the weekend before. I thought of how my toddler son Reuben would serve as a terrible barometer of her non-development; how apparent her delay would be when we looked at him; how he would be burdened with her as they grew up.

I started to panic that my older son Morgan, 10 years her senior, would inherit a parental role over his middle-aged sister if she outlived her father and I. She was two-weeks-old and I was planning where she would live when she was 50.

Unlike a lot of things that can be paid away or emigrated from, there was no getting out of this. This was for life. The instant shift in priorities. The forever of it. The blood and bones of one extra chromosome.

But oh, she was beautiful. And she was here, alive, my daughter. A sister for my two sons. Grabbing my finger with her hand, just like they did. And feeding. And holding my gaze. Just like a baby. After all, I had to remind myself, she was a baby.

And yet, I found it difficult to feel proud of her, which is still hard to admit. In those first weeks, people told me I was grieving for the baby I didn’t have. The one I’d been expecting. I didn’t think this was true. And now, eight years later, I know it wasn’t. I hadn’t built up an image of a little girl – all curls and bows – in my head. The truth is more selfish than that.

I was grieving for my freedom, for the life I had up until the moment her diagnosis was said aloud and I became a woman who would always be the mother of a dependent child.

Kind, well-intentioned people told me she was an angel from heaven, or something cherubic along those lines. As though this was a great thing that had happened. That I’d been chosen. That in some cultures she would be worshipped. I remember feeling enraged. So you wish you’d had one? One of these disabled children? Given the choice, I’d have opted for Lily-Rose, minus the syndrome, every time. And if that made her less of an angel and me less chosen, then that was absolutely fine by me.

My child had what pregnant women whispered a prayer to be spared from. I found it difficult being around new mothers, feeling under pressure to take part in their proud milestone chatter, fearing Lily-Rose was already out of the race.

A mother at Reuben’s school said it was a shame I hadn’t known about her diagnosis before she was born so I could have made a decision, while there was still time.

A woman stopped me on the street to tell me my child was nothing to be ashamed of.

A former work colleague told me I was her inspiration.

I was just putting one foot in front of the other.

“I’m sorry.” I’ve heard these two words a lot since 2008. I never thought I’d come to bristle at an expression that, in the normal run of things, we might feel isn’t said enough. The first one went like this: “I’m sorry. Your daughter has Down Syndrome.” And then they just kept coming.

“I’m sorry. Your baby has a heart defect.” “I’m sorry. There is a leak in her heart repair.” “I’m sorry. The leak is growing.” “I’m sorry. But I can’t understand her.” “I’m sorry. I didn’t think to invite her to the party.” “I’m sorry. We don’t think this summer camp will suit her.”

Of course there have been great joys too, and exhilarating achievements. And the latter have become so frequent that now she is to me a lioness; a champion among little girls, playing basketball with her brothers and scoring fair and square; a pencil-chewing hero carefully reading her school books and resolving to complete her maths homework by herself, however long it takes.

There have been heart surgeries and they’ve been alarming and upsetting. But then you feel yourself exhale, you look around and you see that they’re over, and that everyone’s still standing. And on you go, never glancing back or daring to wonder how you all got through it. Again. Your child, so fragile but yet so tough, has triumphed once more and has the scars to prove it.

Lily-Rose does everything that her peers do because she watches carefully and she misses nothing. It often takes her a bit longer, but she gets there. She learns by living, by climbing, by falling down, by getting back up. By always getting back up.

It can be tempting to put most things about my daughter down to that third chromosome 21; the way she sleeps, the fact that she sometimes snores, her determination, her sense of humour, how easily and fully she laughs, her sensitivity toward others, her honesty. But my sons share most of these traits and have others of their own so who knows where Trisomy 21 begins and Lily-Rose ends? Untangling the two is an impossibility and love is the only answer.

To people who don’t know what to say when a child with Down Syndrome is born, please start with “Congratulations”. You’d be surprised how little we hear this word. And how much we want to. It’s a new baby! Bring flowers and babygros, or whatever you normally do. And if you see a family resemblance, say it. Because it is there, alongside the sweet almond eyes.

To mothers and fathers of newborns with Down Syndrome; Congratulations on the birth of your baby. Undoubtedly, there is hard work ahead but the good news is that these early days are likely to be your darkest ones, and that cloud of fear you can barely breathe through will lift and be replaced by something wondrous and affirming.

You will most probably shadow your child for the rest of your life, as we will ours. During her first months, I thought of myself and this seemed like the end of possibility for me. Now, I think of myself and love that we’ll always be close and that I’ll get to share in all of her accomplishments.

From time to time, kind strangers might approach you to share an anecdote. My favourite was the gentleman who assured me that there “is hope” because he’d seen “a Down’s girl with her friend at a Bon Jovi concert once.” So that’s something. I’m not sure what exactly, but it’s definitely something.

Down syndrome in Ireland

• Down Syndrome is the most frequent chromosomal anomaly and occurs in approximately one in every 546 live births in this country.

• It is estimated there are currently 7,000 people in Ireland with the condition.

• Heart abnormalities are common, affecting 40-48pc of newborns with Down Syndrome.

• 80pc of babies with Down Syndrome are born to mothers under the age of 35.

• Irish studies show, however, that the chance of having a baby with Down Syndrome is one in 900 at age 30. This increases to one in 100 at age 40.

• People with Down Syndrome are now living into their 70s in Ireland.

Written by Justine Delaney Wilson. First published in the Irish Independent, to view original publication click here.

Justine Delaney Wilson has written a book inspired by her daughter Lily-Rose, who has Down Syndrome. Her novel ‘The Difference’ (Hachette Ireland) is out now, click here to buy.