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.