It was dinnertime on a Friday night. Ruby asked me why her sister, Lydia, had her tongue out. I replied, ‘Lydia’s muscles don’t work like ours. It’s a part of her that makes her special. She has an extra chromosome.’ Ruby’s response was, ‘Can I have one of those too, mum?’
Having a child with Down syndrome was a shock at first. It was very hard. She wasn’t what I expected. I felt everyone in society was looking and judging. She wasn’t ‘perfect’, but what child is?
Initially, I thought no one had any idea of what I was going through. When people asked me about Lydia’s disability, I was very defensive. I didn’t realize that they were trying to understand and be empathetic. My viewpoint as a mother was different. I was very protective, both of her and myself.
My first year with her was my version of hell. I expected a lot of myself. I was totally responsible for how she developed; what I did would have so much impact on how she would be later on in life. I put a lot of pressure on myself for her to thrive in the right way. This pressure really took its toll on me.
Over the years my husband, Murray and I have learnt a lot. We have learnt that as individuals we can’t actually understand everybody’s journey because we haven’t been through it ourselves. We also learnt that acceptance is an ongoing thing. Over time, we’ve found that it’s easier to accept and understand other people and not expect them to do the same for us. We are a lot better now at being more open-minded and embracing differences rather than putting people into little boxes. Hopefully, in time we can stand back and see that we have given Lydia a fantastic start in life and all our hard work has paid off.
I don’t agree with some things that society focuses on. For example, when you are pregnant and you get a 12-week ultrasound scan, it is possible to diagnose if your child has a chromosomal abnormality. You are required to sign a form to authorize the sonographer to perform the test. From the start, the stigma is present. This paperwork does nothing to build understanding. My experience tells me that having a child with a disability can lead to hard times, but it also has taught me a lot about myself and my family. Having a child with a disability is okay and it is different, but often different is a good thing.
“I would like to be a ballerina, or maybe to be an ice cream truck driver. I could eat all the ice cream I want.”