The Mighty Logo

The Cliche I Heard After My Son's Down Syndrome Diagnosis That's Spot On

The most helpful emails in health
Browse our free newsletters

I hate cliches. Maybe it’s because my college professors told me to leave them out of news pieces or maybe it’s because I think too much, but I’ve really grown to despise them over the last year.

When you get a Down syndrome diagnosis, you hear a lot of cliches from a lot of well-intentioned people. I suspect anytime someone gets life-changing news, cliches like, “God doesn’t give you more than you can handle” (which I find to be incredibly off-based, by the way) start rolling in.

But I have to admit, there is one cliche that even my over-analytical mind has found to be spot on: you are stronger than you know.

Of course, whenever someone says this to you, you may be in the weakest of places. If you’re like me, strong is something you thought you were before you ever experienced a true hardship. But after going through multiple crises last year, with the help of God, family and friends, I became a better version of myself — I was stronger than I knew.

My son Anderson’s therapists continually say the same thing about him. He is so motivated. For having a moderate size VSD (ventricular septal defect), for having low muscle-tone and being a bit underweight, he was meeting milestones on the typical chart. Which seemed miraculous in itself.

Hours after Anderson’s open-heart surgery, I asked the nurse how big his VSD actually was. The surgeon came into tell us himself. What we thought was a 4-millimeter hole was actually 9 millimeters — more than double the estimated size. And there wasn’t just one hole, there were two. The second hole was 4 millimeters wide.

Which means our sweet boy was always happy, always moving and always learning new things with a heart that was failing him. He is stronger than we know.

When the books say our boy may have problems learning or communicating, we will remember he is stronger than we know. If a future school thinks his Down syndrome diagnosis means he can’t participate with other kids, we will tell them: he is stronger than we know. When people tell us to lower our expectations for his future, we will tell them: he is stronger than you know.

To the new mom out there who was just told the baby in your arms or in your tummy has an extra chromosome, who may have had a uneducated doctor (like I did) who told you your little one will likely never amount to much, I’m here to tell you a cliche I know is true now: you both are stronger than you know.

jillianbenfield-mighty

Follow this journey on News Maker to Homemaker.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Originally published: July 16, 2015
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home