When a Doctor Said My Daughter With Down Syndrome Wouldn't Look Like Me

My first conversation with my daughter Jaycee’s NICU doctor damaged me for years. When he told me he suspected Down syndrome, he pointed out everything different on her body. He bluntly said, while pointing to my husband and me, “She won’t look like your baby pictures or your baby pictures. She has Down syndrome; she won’t look like you.”

That’s when I made my first mistake as a parent. I listened to the doctor and believed his words. After that conversation, I believed Jaycee didn’t look like me. I believed we were different. When people commented on how she looked like me, I thought they were just trying to be nice. It upset me because my mind flashed back to the doctor who made me feel so disconnected to my own daughter. It probably seems silly to most people, but I was convinced the extra chromosome made Jaycee more unlike me than like me based upon that first conversation about her genetic condition.

Then it happened. When Jaycee was a toddler, I was fixing her hair, and I noticed she had a mole in her hairline in the exact place as me. Wow! That mole changed my entire view of Jaycee. She was like me! I realized Jaycee does have extra genetic information, but my husband and I contributed to it. I let go of that doctor’s tainted words and looked at Jaycee as someone who could be a lot like me.

As proof, here are some ways Jaycee and I are alike:

• We both hate dogs. Really, we aren’t into animals at all, but occasionally we will pet one if it’s cute enough.
• We’d rather be inside with air conditioning than outside in fresh air.
• We both love to watch Netflix in bed with the fan on. (She likes the fan on high, but I like it on low.)
• We both love to dance and sing in the car. 
• We’re not morning people! We’re both borderline grumpy in the morning. We’d be much, much perkier if our day could start at 8 a.m., which rarely happens.
• We can eat dessert any time of day if needed.
• We both get excited when we see a Disney princess in person. 
• We’re both scheduled, routine people. We don’t like spontaneous activities!
• We both sweat with minimal physical exertion. 
• And I guess we both look a little bit alike too!

The morale of this story?

Don’t believe everything you’re told about your child. 

Even if your child has a genetic condition, they will still be like you.

Sometimes a small thing (like a mole) can make all the difference.

The Mighty is asking its readers the following: Describe a time you saw your or your loved one’s disability, illness and/or disease through the eyes of someone else.  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.