You Don't Want to Miss This Life

I remember many things about my daughter when she was a baby.

There were dozens of frilly dresses and cute outfits hanging in her closet. She looked adorable in all of them. I enjoyed dressing Jaycee up and fixing her brown strands of hair.

She made the sweetest little noises and had a weak cry that I never strained to hear.

There were early milestones to celebrate. Sitting up, walking, and climbing steps were each documented with videos and pictures. The milestones all came later than expected but were exciting nevertheless.

My husband and I held Jaycee often and showered her with love like any other baby. Perhaps, we did so a bit more as she underwent two different open heart surgeries before her third birthday. The uncertainty of her future was never far from our minds.

My daughter loved Barney as a preschooler. I got to know many of Barney's hit songs. I also became intimately aware of Mickey's need for Toodles every episode.

Though the years have passed, Mickey and Barney can still be heard occasionally on Jaycee's iPad. Hearing Barney sing about ice cream and cats takes me back. I miss the days when my daughter was little. Those times when she was light enough for me to pick up and spin around while she giggled with glee.

Jaycee is a teenager now. Her clothes are still plentiful and cute, but the frilly dresses are no more. After she chooses her clothes, she rummages around her hair basket and hands me a ponytail or hair barrette indicating her preference for the day. I obey her wishes like a good stylist.

She finds ways to communicate when verbally she can't. There are many gestures, grunts, and signs that I usually decode easily. There are some things through repetition she has learned to say. "Momma's mad like a hippo," for some reason is one such thing. Of course, she knows the lyrics to 'Baby Shark,' much to her brother's dismay. Her speech isn't clear enough to say everything she wants, but she tries hard and keeps making progress. Her cry, which occurs mainly during necessary medical procedures and tests, is now loud and breaks my heart a bit.

We have had different milestones in the past few years: the first time using a razor, first school dance, and first time cooking green beans independently.

Even though she's growing up, Jaycee still loves to be hugged and kissed. She sometimes gestures for us all to have a family hug. When she spots me sitting on my husband's lap, she yells for her brother, "Bubba, pile on dad!" My husband then finds himself holding all of us within seconds of her announcement.

Thirteen years ago, a doctor pointed out everything on Jaycee's newborn body that indicated Down syndrome. I cried about those differences. The doctor gave predictions about her life, and I worried what it would mean for she and I. When I researched Down syndrome, discouragement came with every word read.

In all the information I received, I never heard: "You don't want to miss this life." I would have benefited from someone telling me just that. My life with Jaycee would be great, and I wouldn't want to miss the chance to be her mom. I wouldn't want to miss all the love and awesomeness that lived inside my daughter.

I wasted too much time having negative emotions early on. Eventually, Jaycee's diagnosis faded into the background. She alone was what I saw and thought of, not the Down syndrome. She's more than her diagnosis after all.

If there's one thing I could tell a worried mom of a child with a Down syndrome diagnosis, it would be this: You don't want to miss this life.

It will be different and sometimes challenging. But, it is good. Our family is missing nothing.

October is Down syndrome awareness month. Down syndrome is a genetic condition when there are three copies of the 21st chromosome instead of only 2.