• Sarah Hyland

Twenty One Three

Today is World Down Syndrome Day.

3 copies of the #21 chromosome. Get it?!

Our daughter Lizzy is 12. She has Down syndrome. When she was a baby, we were asked to contribute to a book of parents' stories about raising a child like Lizzy. These are the 600 words quickly penned between feeds and baths by my husband, Adam, in late 2009.

As I sat with my wife at our 14th wedding anniversary dinner, I had the uncontrollable urge to laugh. It was a laugh of relief at a burden that had somehow dissolved. “I don’t care!” I said. “What don’t you care about?” asked my wife, Sarah, looking confused. I smiled. “I don’t care that Lizzy has Down syndrome. I love her and she is our daughter.” It had finally dawned on me that I didn’t need to worry or care about what anyone thought about our newborn baby, Lizzy, about our family or me. We both sat there with tears in our eyes.

From the day Elizabeth and her twin sister, Peggy, were born – when it seemed that all of our worst fears had been realised – until this point at the dinner a few weeks later, neither of us had really known what to think or feel about Lizzy, about ourselves and about our family’s future.

Not only did Lizzy have Down syndrome, which was revealed to us after she was born, but she also had a severe atrioventricular septal defect – she had no wall dividing the left and right sides of her heart and her heart valves were not formed. Without open-heart reconstructive surgery she would be unlikely to see her first birthday. It almost felt like she was an alien; we didn’t know where she had come from. And I kept wondering: why was she here? For the first couple of days after she was born, it was hard for Sarah to look at her or touch her. We thought the next few months and years would be a burden of pain, worry and fear. That’s all we could see in those early days.

But that night, at the dinner, I suddenly appreciated that it wasn’t about how hard things were going to be for us as parents or worrying what others would think of Lizzy or of us. The point of it was: it’s all about what we can do for Lizzy to give her the best and happiest life we can. And that’s what we have tried to do ever since that revelation. Thankfully her heart surgery went wonderfully well. It was so hard seeing our tiny girl, who couldn’t even make it to three kilograms for the surgery, taken away to theatre, knowing we might not see her again.

We have been lucky to have had such great help from surgeons, hospital staff, therapists and friends. Lizzy is developing so well. She always seems so thrilled to see her family and friends. Her determination to do whatever her twin sister can do is wonderful. Now we really know why the most important thing in life is to make the best of what we’ve got, whatever that may be, and not to fantasise about giftedness.

We know there are a lot of challenges to come: school, teenage years, and the tensions that might develop between Lizzy and Peggy; questions of independence; as Sarah and I get older, responsibilities may shift to Lizzy’s sister and brother. We can’t meet any of those challenges now. We can only do for Lizzy what she needs us to do for her today.

That’s why I was laughing on that night of our anniversary. I realised that doing whatever we needed to do for Lizzy was never going to seem too hard.

The reason Lizzy is here is because our family can all love her, help her and make her glad she was born. We are all glad she was born.

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