SARAH CADEN

‘Then, the idea of hanging out with other mothers of kids with Down syndrome was my worst nightmare’

Everyone was pregnant in 2010. Friends, family, friends’ family, friends of friends. And I was pregnant, too. It was my second pregnancy. My first-born daughter was a toddler. The summer was fine and the baby was due at the end of August. There was a lot of hanging around in parks, going to the beach, preparing for a repeat of first time around.

Then, my second baby was born. It’s a girl. Great, we wanted a girl. Someone medical in the room said, “I’m sure you just wanted a healthy baby.” I felt a bit ashamed of having wished for another girl, rather than the more noble wish for the baby’s welfare.

Then things went silent.

Then things got very noisy, after they told us that this little girl seemed to have Down syndrome. I was noisy. I think. It’s a bit of blur.

What I remember vividly, however, was imagining a clock and how it should be possible to turn it back. I should be able to look at the clock, and, just with my mind, my force of will, turn the hands back, put things right and then allow life to proceed as it should, as normal.

This, I needed the universe to know, was not my life. This was a mistake and needed to be corrected, as soon as possible. I was not the kind of person who could do this.

I think that is what I cried, noisily, explosively, as they wheeled me to the recovery ward. “I can’t do this. Not me.”

In the months after, I have no idea how I appeared on the outside. Inside, I raged, mostly at myself. I hated myself for the fool’s paradise I had occupied in pregnancy. How could I have been so presumptuous, so arrogant? How could I not have seen this coming? How could I have imagined everything would be fine?

I had to stop driving anywhere near Holles Street. I felt murderous towards pregnant women, waddling along, blithely confident their babies would be fine and probably correct.

Everyone seemed to be pregnant. Friends, family, friends’ family, friends of friends, they’d had their babies already or they were due soon. The babies came. They were all fine. Friends, family, friends’ family, friends of friends, it all proceeded as normal.

Or whatever normal is, we’d laugh. I was able to laugh. I was able to love my baby. I was able to enjoy her and her sister. I went back to work. Life went on and Down syndrome became part of it, like an amuse bouche sent by the chef to add a little unexpected variety to your meal.

In so many ways, she was just like any other baby. In so many ways, it didn’t really make much difference. And yet, socially more than in any other regard, I wasn’t there.

I hated groups. I hated groups of people who knew me well. I hated groups of people who didn’t know me at all. I didn’t want one more person to tell me that their cousin had Down syndrome and was actually doing great. I didn’t want one more person to ask me if she went to a ‘special’ creche when I was at work. I didn’t want to talk about it and yet it was all I could think to talk about.

I felt outside myself. I was a balloon and someone had let go of the string. I was floating away, above everyone’s heads, but too deflated to get away entirely.

I felt outside of an extended circle to which I had once belonged. No one made me feel that way. It was in my own head. Friends, family, friends’ family, friends of friends talked like we were still on the same track. The babies would be playmates, they’d grow up together, wasn’t it nice they were close in age? We weren’t on the same track. We had been, but not any more.

Nothing about my life was on the same track, I believed. Would my little girl go to mainstream school? Would she have health problems? Would she have friends? Would she have people who loved her and a place in the world? Who would be her gang? Who would be mine?

One thing I resolved, while still in the maternity hospital with my second daughter, was that I wouldn’t be hanging out with people in the same boat. I wasn’t going to be raising awareness of Down syndrome, or campaigning, or joining support groups or any of it.

That was not for me.

That was not me. The problem was that I didn’t know who was me.

From the start, I shrank from the well-meaning professional assurances that we’d get ‘linked-in’. It sounded like joining a chain gang, getting hitched to people whether you liked them or not. There were lots of forms to fill out in the early weeks, various health checks that stoked the fear that the life ahead would be an endless round of hospital visits, and then, after six months, the disability services invited me and the baby for our first play/coffee morning.

I don’t remember much about it. Later, another first-timer reminded me of how we lay our babies in a circle, all looking fixedly at them and not each other, for fear of tears. I vaguely recall wondering how the hell I had ended up there.

Another woman told me, months later, that she looked at me come in with the other first-timers for coffee, and recognised on my face the same disbelief and distress she’d felt on her first morning less than a year before.

Over a couple of years of those coffee mornings, I became the one recognising the distress of the first-timers who came after me. The brittle breeziness, the desire to be embraced and understood combined with the desire to get the hell out of this weird new life and back to their old one, thank you very much.

But there’s no getting out of it. There’s no putting back hands of clocks, or pressing rewind or setting the course straight and into the life you thought you were getting before your baby with Down syndrome arrived. What there is, though, is acceptance and acceptance of where I am and who I am now, which came with women I met at those coffee mornings.

Out of all the women I met, there are five who have become my solid gang. There are times when I don’t know where I’d be without them. Barely a day passes when we don’t communicate in some way. We meet with our kids at various Special Olympics clubs, birthday parties, swimming lessons, kids’ yoga and we meet as ourselves, without them. We pencil nights out in to our calendars, ideally six weeks apart, for full years ahead. We have an unspoken policy of chicken wings and drinks, full dinner having proven too involved and drinks alone too dangerous. We are always threatening to have a night away. We don’t have evenings at each other’s houses as we know only too well that everyone has enough on their plates without playing hostess. We talk about Down syndrome and we don’t.

We might not have been friends if we didn’t have Down syndrome in common, but that matters less than I would have thought when my baby was born. Then, the idea of hanging out with other mothers of kids with DS was my worst nightmare, something I imagined as a denial of my true self, a shoehorning of my personality into a disability-mother mould. At all costs, I believed, I had to avoid allowing Down syndrome to become my identity.

However, until I accepted that Down syndrome is now part of my identity, I couldn’t be happy. I was fighting what didn’t need to be fought. I could accept this new reality and still be me. There were just extra parts of me. And that extra part needed extra friends. Extra friends who understood.

And the shorthand that exists between parents of children with a disability has made my life more open, instead of more closed and limited, which was, to my embarrassment, what I would once have believed. I have had more revealing and honest conversations with other mothers in three minutes, while showering kids after Special Olympics swimming, than I have had with people I’ve known for years. The shorthand doesn’t always turn into friendship, but in the case of my gang of six, it has.

The friends, the family, the friends’ families, the friends of friends, they still have their place in my life. Even their babies have a place in my life. My life has expanded, though. It has expanded to make an extra space for that which restored me, the support group I was determined never to need.

I am that kind of person. Not better, not blessed, but not who I used to be either, and I don’t regret that change.

I’m not going to explain how great my little girl is, now nearly 10 years old. I felt shame, for a long time, about how I felt when she was born and after. Time and distance and hearing myself tell others not to be so hard on themselves made me realise that none of it was about her, though, not really. It wasn’t even about Down syndrome, really. It was about shock, and a sudden veering off of the expected path, and then acceptance and love.

It was about finding the love in a place I fought against. And it’s a great love; shared with five other women who were, like me, all pregnant in 2010.