- Amanda Niszczot Riemersma's twin toddlers were born with a rare genetic mutation, Williams syndrome.
- Officially it's termed a disorder - but Amanda has come to see it as a "magical gift."
This as-told-to essay is based on a conversation with Amanda Niszczot Riemersma, whose twins have Williams syndrome. It has been edited for length and clarity.
At 10 weeks old, my gorgeous identical twin boys, Mason and Jordan, were diagnosed with a syndrome so rare hardly anyone at the hospital in Newcastle, Australia, had heard of it.
They had respiratory problems, and after looking at them, the cardiologist said he thought they had Williams syndrome caused by the deletion of the elastin gene. I stupidly assumed it was a heart condition.
He said, "It's more than that," and I asked him if I should Google it. He said "yes, just stick to the reputable websites.'"
All I saw were the negatives: the health abnormalities, such as heart problems, and also potentially with their eyes, teeth, kidneys, and bowels. People with Williams syndrome can have mild to moderate intellectual disability. I saw pictures of people with elfin-like facial features frequently including a broad forehead, underdeveloped chin, short nose, and full cheeks.
It wasn't so comforting.
I was this crazy mother shouting from the rooftops: "What is this syndrome? Can somebody help me?"
I was angry
I asked the cardiologist if he had seen this before. He had. I demanded to know: how old is that person? What is their life like? Do they have a job? Are they married? Are they disabled?
He couldn't tell me. I was angry at the cardiologist. At the world.
I ran out of the room and vomited. Then I fell to my knees and prayed this wasn't real. I just wanted to hear: this will be mild. They'll have a good life. But nobody could guarantee that.
Instead, what I heard every time was they may never drive because of their poor spatial awareness. They may not live independently because they can't deal with money or getting from A to B. They may look extremely disabled. Each was like a bullet.
Now I feel like the luckiest mom ever
Afterward, I sat on my couch, staring at them for weeks, asking myself over and over the same brutal question: "How do I fix them?"
You can fix hearts, eyes, or teeth. But you can't fix cognitive intelligence.
I now know it was shock and grief speaking. It's incredible now to look back at those feelings because I couldn't feel more different today. I honestly feel like the luckiest mom in the entire world.
Because what I was overlooking were this syndrome's common, magical, positive traits.
As the months passed, these unique character traits emerged from their first smiles. It lifted me from the darkest place of my life.
Those with Williams syndrome commonly have extremely outgoing personalities, unrelentingly happy dispositions, an unending openness to engaging with others, very little social inhibition, excellent linguistic skills, and a natural intuitiveness and empathy.
The more I read, the more I got excited, even obsessed with my twins. Because these little pixie-like fairies were blossoming before my eyes, and they still amaze me daily.
I recently took a pic of Jordan looking so much like an elf it blew my mind. I'm not angry or scared of their condition anymore.