motherhood and Down syndrome

I have just finished writing a post for a lovely lass called Annie Love for Down Syndrome Awareness Month. It will be published in October at some point so I will check back in later on with the link.

I never really know where to start when I’m writing about Down syndrome and my experience of it as a sibling. All my life I feel like I’ve been forced into a position (of my own doing) to sugar coat things and combat all the negativity that surrounds disability. I never wanted people to think Emily couldn’t do things so I would scream positivity from the rooftops at anyone who would listen.

Now that I’m a bit older I feel like honesty is the way forward – acknowledging that things haven’t always been easy, but that doesn’t mean I would change anything about my life.

Becoming a mother has stirred something in me. Motherhood has taken me back to the very beginning… not just my daughters’ beginnings, but my own beginning too. Somehow parenthood and the pregnancy process has the ability to make you reflect on your own childhood, in ways which you never have previously. Pregnancy and the raw experience of it is where Down syndrome is created. During each of my three pregnancies I was acutely aware of the delicate nature of creating a human.

I was offered a number of tests during pregnancy, and it seemed like the world was trying to offer me the chance to style the perfect child. That if I found out that there was something missing, or if the child wasn’t exactly as I imagined, I could just start again. I can’t help but think, or hope, that if the community had a better understanding of Down syndrome it would help them to make decisions about their pregnancies, should the need arise. Without information and understanding a choice is not informed, it is made from a position of fear.

I didn’t have prenatal screening for Down syndrome during my pregnancies. I don’t think this is the right choice for everyone, it was just my choice. And given my lifelong experience with Down syndrome, along with a degree and career in the disability sector, I can confidently say it was an informed choice.

It worried me that during this process where I made decisions about which tests to take, and which to dismiss, I was given such little explanation of my options. I certainly wasn’t given any information about Down syndrome. I can’t imagine ever taking a test without knowing the reason why. I want to know: what am I trying to protect myself and my baby from, and why? I believe it is with information and understanding that better decisions can be made.

I hope that during the World Down Syndrome Awareness Month people can learn a bit more about Down syndrome – not just the flashy and the good and the cheerful and the “UP NOT DOWN!” and so on, but the somber side of Down syndrome as well. I hope people can learn to view people with Down syndrome as rounded, full and diverse individuals. I hope that with a little more understanding they can make better and informed choices during and after pregnancy. I hope it helps to dispel some of the fear.

Life would be so boring if we were all the same.




a phone call

Mum called me from Emily’s house the other day. Em is going to Bali with her husband and mother and father in law in a few weeks. I think it will be about her fifth trip to Bali. And yes, Em is married, her husband also has Down syndrome. WHAT? I hear you cry… Another story for another time. This time they will be travelling with her in-laws, however on previous trips they have done it on their own, with someone carefully navigating them through the airport on this end, and another meeting them on the other side. I remember it being a time of stress due to airport regulations, and how far you could get them through the system without having a ticket yourself. It was somewhat awkward, picking our way through red-tape, but they did it. And we all felt such a sense of nervous satisfaction.

So Mum rang me and asked me if I could go to Em’s house the night before she flies out, to help set out some comfortable clothes for her to wear on the plane and make sure she has the right things in her bag. I agreed and arranged a time and wrote it on my calendar. Usually I would not blink an eyelid at this. But with all this writing and thinking about her, it made me wonder what it would be like if she didn’t have Down syndrome. If, instead of me driving over to her house to help her choose a pair of tracksuit pants and a loose fitting t-shirt, and laying them carefully on the end of her bed, and checking her bag to make sure she had the right things in her carry on luggage, if instead of that she was just heading off to Bali, minus the DS and the BS. That people didn’t raise their eyebrows in shock every time it was mentioned that she was going to Bali with her husband.

Maybe she would be calling me to catch up for a coffee before she left, maybe popping over to visit me and the kids. Maybe she would have kids of her own, and we would lay together, feet touching on the couch while we drank a cup of tea and spoke about the trinkets she would bring us back, with a few kids milling around with some lego on the floor. Maybe we would all be going together, we’d drink glasses of wine by the poolside while our husbands swam with the children. We’d chat about our parents or the weather or the markets while we gently dried our babies hair with fluffy hotel towels.

Is that what it might have been like for us?

Over the years we have always steered away from wondering about this. Occasionally on long drives, or up late at night on holidays, we would wonder if there was a pill that would take away the DS… would we want her to take it? 

Of course we say no. No way. Not now. We love her so much, and she would be gone. Replaced by a stranger. Some stiff 30 year old woman who wanted to work a corporate job, who didn’t like us, whose favourite food was spaghetti marinara, when we know that she is meant to love chocolate ripple cake. It would be all wrong. But also, we would be different. If I shave away all the parts of me that have been made, moulded, shaped, and carefully manicured by her, would there be anything left of me?

Do you ever wonder about this?