Why Wilingness?


~by Christie Taylor

Shortly after my son, Wil, was born, we discovered he had an extra copy of his 21st chromosome. In other words, Wil has Trisomy 21, the most common type of Down syndrome.

As I was trying to process this news, I received a folder from the hospital full of multiple documents covered in definitions, statistics and specialists’ phone numbers. All meant to help, but at the time, was completely overwhelming. My head was spinning with the news and I literally felt as if the ground had dropped underneath me.

A few hours after Wil was born, a social worker walked in my birthing room. She had a kind face and smile, but in her hand, I quickly noted that she held a royal blue folder. More information was last thing I wanted at the time. I was drowning in information and I still hadn’t wrapped my mind about what Down syndrome meant for my son, myself, and my family. Even with her kind smile, a part of me instantly disliked this woman. She surprised me by not immediately handing me the folder, though.  Instead, she held it up for me to see. On the front cover there was a close-up picture of a blond girl, approximately five years old, with large bright, blue eyes. From the almond shape of the young girl’s eyes, I could see she had Down syndrome.

“Isn’t she beautiful?” the social worker asked me. I nodded my head yes as tears stung my eyes and spilled down my cheeks. She was more than beautiful. She was breathtaking.

This photo struck me so compellingly because I was shown not another definition or statistic but a girl. A blond girl with almond-shaped blue eyes. She is a person, first and foremost. I will never forget this social worker who shared with me a powerful truth that is easily overlooked when we are presented with a diagnosis.

Those folders I was given those years ago are now dog-eared from use, the phone numbers to the specialists called, the therapy appointments attended, the support groups joined. The information has been very helpful, but it is only part of our lives. What stands out in front, is my son. A beautiful, light-haired boy who loves to wear hats, kick a soccer ball and play with his friends. Wil is never too busy to give a hug or stop to watch his breath on a cold, winter day. He truly knows what it is to live in the moment, every moment.

I love my hat-loving boy, first and foremost, with all that he is, and he loves his mom, first and foremost, with all that I am, even though I am short one chromosome than him.



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