8 Things My Girls With Down Syndrome Taught Me About Life

In honor of Down Syndrome Awareness Month, I’m sharing a guest post from Gillian Marchenko, a mom to four girls including two with Down syndrome. The family lives in Chicago. A blogger, speaker and advocate, Gillian is also the author of Sun Shine Down, a new memoir.

I know a lot of moms of kids with special needs who loved their child right away. That’s not my story. My memoir chronicles my grief process, and ends with me falling in love with my baby. Polly is now seven years old. Four years ago we adopted another little girl, Evangeline, who also has Down syndrome; she’ll be seven at the end of October. My children with Down syndrome regularly teach me things about life I desperately need to learn. These include….

1) Keep trying
I watch Polly work with her occupational therapist at writing her name. Her hand shakes as she grips the number two pencil. She’s frustrated. The letter Y is hard to write. “Take a deep breath, Polly. Try again,” coaxes her therapist. What Polly has accomplished so far in life has taken a great amount of work. Some skills she has yet to master, but she keeps trying. I think about that when I come up against hard things in my life like depression, business and not having enough mental and physical energy to complete all the tasks in my day. Instead of giving up, I try to follow Polly’s lead and push through.

2) Look past the stereotype to the person
When Polly was born, my older girls Elaina and Zoya loved her right away. All three girls taught me to look past the stereotype, to the person. “Down syndrome just means it may take Polly a little longer to learn something, right? But we love her. And we will love her, right Mom?”

3) Be grateful for what you have
Our daughter Evangeline loves her light-up cookie jar. She carries it around the house with her. It makes sense though, because 1) she’s a kid and 2) she spent the first two-and-a-half years of her life in a Ukrainian orphanage. The day we took her home, she left with nothing but the clothes on her back. Watching Evie as she plays with her favorite toy reminds me that there are a lot of favorites in my life as well: My husband, my kids, our home, the life we’ve built. It would do me some good to slow down, pay attention to my favorite things and e thankful for what I have.

4) Communication happens without words
Evangeline is six years old and nonverbal. She is starting to use PECS (a picture exchange communication system) to assert her wants and needs but really, this kid has been communicating since we got her. At first she communicated that she didn’t know us, love us, or trust us by staying away and soothing herself. Now, sometimes when I am in the kitchen or upstairs doing chores there’s a little tug on my shirt. I look down and my child is there, arms reached up to me. Love finds a way to communicate.

5) Education is everything
I’m at the park with my girls, swinging one of them in a swing. The child next to us asks her mom why Evie looks different: “Why doesn’t she talk?” Unsure of how to handle the situation, the mother shoos her daughter away and I sigh. I can’t judge this mom. What we don’t know can be scary. But education is important. If we start with kids, they get to live their whole lives unafraid of people who are differently-abled. That’s why I work to educate those around me about Down syndrome.

6) Honest questions deserve honest answers
I’m at Polly’s first grade class reading “My Friend Isabelle,” by Eliza Woloson. Afterward I ask the children for questions. One kid raises his hand. “Why is Polly different than the rest of us?” I smile, admiring his candor. “Polly isn’t different than the rest of you. But she does have Down syndrome, which means she has one more chromosome than you. Chromosomes are like directions in the body. The fact that Polly has more just mixes up some of the directions for her, which means it may take her a little longer to learn things, but she’ll get there.” The little boy nods. He understands. That’s all it takes.

7) Be a good friend
Polly sees that Evie dropped her favorite snack on the floor. She stops what she is doing, walks over and picks it up for you. “Here you go, Evie. I love you.” Of course, I would like to think that I knew how to be a good friend before my daughters came along. But the difference is this: Evie doesn’t interact with Polly very much yet, and yet Polly continues to be kind and do right by her. That’s what I mean. My kids teach me how to be a good friend for people’s sake, not for my own.

8) Choose positive
Every day I have a choice in life. I can focus on negativity—what’s negative about me, about my kids and our life. Or I can attempt to focus on the posit. My girls seem to seek out the good in situations, others and themselves. It is a lesson I keep learning. Polly’s home from her first day of second grade. She struts around the house, high-fiving her sisters, her dad and me. “Yeah! It’s the last day of school!” We laugh and tell Polly that it isn’t the last day of school, but it is the first. She giggles at herself, shrugs her shoulders and starts towards us again for another round of high-fives.

You can find Gillian on Facebook here.

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