What I Want To Say To My Former Self Upon Receiving A Down Syndrome Diagnosis

by Jillian Benfield
Jillian Benfield

Dear Me,

You’re about to receive the news that deep down you thought was coming. Ever since the ultrasound which revealed soft markers for Down syndrome, you feared you would get this phone call; the phone call that will ultimately bring your 20-week pregnant body to the cold, tiled floor of your new unpacked rental home.

In between the sobs and the near-incoherent words you’re muttering to your mom, you start flashing back to every single negative thing that you ever thought about Down syndrome. You think back to the 8-year-old girl who was silently afraid of the teenage boy who brushed up against you while doing laps in a hotel pool, you think back to an intoxicated picture of yourself in college when a friend commented that it looked like you had ‘downs,’ you think back to the time you told your mother-in-law that you thought it was amazing that her son was so good with kids with special needs, but that it was not a gift you possessed—adding that you could never be a mom to a child with special needs.

Well, now you are. You feel like everything is coming apart, but what you don’t know is that this baby inside of you is actually pulling everything into place. Those deepest parts of yourself that you hate, he will change those.

The doctor you’re about to meet, he’s going to tell you that your son’s biggest hope in life is to mop the floors of a fast food restaurant one day. You’re going to believe him for a while. For a while, you’re going to grieve like you never have before. You’re going to spend some nights on the shower floor. The mornings will be worse, because you will realize it wasn’t a dream—the warm Southwestern sunlight peering through the windows inviting you to take on the day will make you sink into an even darker place.

But then, you will feel a part of you re-emerge. A part of that you like. No, you can’t use your journalism skills at a job in this small dusty town, but you can use them to dig you out of the hole you think you are in.

You’ll learn about school inclusion, you’ll discover that there are college programs for young adults with Down syndrome, and you’ll meet a mom who will introduce you to the Down Syndrome Diagnosis Network—an organization that is aiming to change the diagnosis experience, like the one you just had.

Dear you, I hate the pain you are feeling right now, but I’ll tell you this: I wouldn’t take it away from you if I could.

This pain you are experiencing will springboard you into new passions. You used to tell other people’s stories, now you have your own story to tell. That story will somehow gain a following of several thousands that look to you for a bit of encouragement. This pain will start you down a road of advocacy—volunteering, taking disability courses, and writing to play a small part in making a difference for those with Down syndrome and their families.

I wouldn’t take this hurt away from you because your son is not your son without his extra chromosome. And you are not going to be who you were intended to be without him.

Most of the fears you’re having—fears about how this will affect your daughter, will you ever be able to travel again, or can you do this without family around to support you, are unfounded. That is to say, it will not be easy. Your life is about to become busier with more appointments, you will be stretched thin, you will have to give more of yourself. Ask for help when you need it, but know that this busyness will be for the benefit of your son and will end up refining you further.

On New Year’s Eve, you’ll give birth to that almond-eyed boy. He will look straight at you, his eyes will instantly pierce your soul and change it simultaneously. There will be two births that day, the one of your child and a re-birth of yourself.

Dear you, your life is not ending, instead you are getting a new and better beginning.


You — three years later