I’ve Got a New List of Down Syndrome Characteristics


Pregnant with my second child, I knew something was different. Not one single test showed signs of Down syndrome. But something was different. As I woke from an emergency cesarean section, my doctor and midwife stood by my side. “Your son has Down syndrome,” the doctor said. I was scared. Frightened too much was wrong, I worried life would never be right again.

“How do you know?” I asked as I stared at the beige rectangular ceiling. Was this good? Or was this bad? Why did I want to cry at the birth of my son? I felt jammed. The words, the feelings escaped me.

They gave me the laundry list of Down syndrome characteristics similar to this one from WebMD:

  • “Low muscle tone (babies appear ‘floppy’)”
  • “Flat facial features, with a small nose”
  • “Upward slant to the eyes”
  • “Small skin folds on the inner corner of the eyes”
  • “Small, abnormally shaped ears”
  • “Single deep crease across the center of the palm”
  • “Hyperflexibility (excessive ability to extend joints)”
  • “Fifth finger has only one flexion furrow instead of two”
  • “Extra space between the big toe and the second toe”
  • “Enlarged tongue that tends to stick out”

And then the doctor told me about four bigger problems related to Down syndrome:

“But he’s beautiful,” he said.

But? I never got the “but.” Yet, I understood the need to figure out when things don’t go as planned. What was it I wanted at birth? Healthy? Happy? What was it I wanted with parenting? After four years, I felt confident in parenting my first child. A child with disabilities wasn’t in the plans. Time to write a new book.

I’ve been told I’m strong. I guess so. But, I don’t really buy that there aren’t a whole bunch of people who can “handle” Down syndrome. My son needed a mom, so off I went. I did the same for him as I would do my first child. Yes, he turned my world upside down (pun intended). I guess it needed turning. With all the doctors, family issues, finance issues and sleep issues (to name just a few), I’m not above saying there are days I wonder what life would be like if I wasn’t a parent of a special needs child. But if the hardest challenges bring the greatest rewards, well goodness, we’re overflowing. Nothing comes easy with my son. But the weakest won’t win the World Series or take home the Olympic gold.

I’ve got a new list of Down syndrome characteristics:

  • Funny
  • Loud
  • Soft
  • Singer
  • Songwriter
  • Screamer
  • Dancer
  • Drummer
  • Pancake-maker
  • Salad-tosser
  • Swimmer
  • Baseball player
  • Reader
  • Demanding
  • Delightful
  • Free of Judgment
  • Hugger

After almost 10 years, I’ve found a basket of blessings that overflow so much, so often and so always. I’m grateful for every challenging, wonderful, annoying, ridiculous, delightful moment I have as a parent of a special needs child.

Something is very different with this child. Thank goodness. Everything is going to be OK.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.


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