A couple weeks ago I wrote a post that focused on an aspect of this culture that I believe is quite harmful and wrong: jealously and gossip. Today I’d like to focus on another aspect that I find quite beautiful and compelling. But first to understand why, you must understand a little bit of my story.
I was an only child for 10 years. From the time I was five years old, I prayed every single night that God would send me brothers and sisters. In 1996 my first brother came along. I was ecstatic. In 1997, my mom found out she was pregnant again. I was being home-schooled at the time, so I would accompany my mom to her doctors’ appointments. It was a long time ago; I don’t remember all the details but I have a very clear memory of standing in the elevator after one appointment. My mom had tears in her eyes as she stared at the closed elevator door and informed me that the doctor thinks my new little sister might have a brain tumor. Oh, and she has Down syndrome too.
I’d only met one Down syndrome girl in my life. I was eight years old, in a dressing room in JC Penny’s trying on a new Easter dress when this girl busted into my dressing room! I was terrified. And this is what I was working off of with my sister’s diagnosis.
Amy was born in November. She didn’t have a brain tumor, but she did have other health problems. I can’t list them all or in what order they happened. She spent several months in the hospital with severe pneumonia when I was thirteen. We fed her out of a feeding tube in her stomach for a long time.
During this time, my second brother was born, healthy as a horse. In 2000, my mom found out she was pregnant again. She opted for no amniocentesis this time because she was not pleased with her obstetricians and the advice they’d given her with her two previous pregnancies.
The day Jenna was born my dad came and picked me up at my high school. With her birth, my prayer for brothers and sisters was finally answered. I was fifteen. We drove away from my school and he looked over at me in the front seat and said, “The baby is healthy but she has Down syndrome.” Huh. I don’t remember what I said because it just wasn’t that big a deal. Three-year-old Amy was a normal little girl. She did little girl things- maybe a little bit more slowly- but she just didn’t seem all that abnormal to me.
Fast-forward thirteen years to where we are now. Amy is boy-crazy sixteen year-old. She loves to sing. At the top of her lungs. Very badly. She’s opinionated. She loves cheerios. She loves dancing. She craves attention. She is so annoying. I love her to death.
Jenna is girly thirteen year-old. She has long hair that she refuses to let my mom cut. She has a bazillion Barbie dolls but she carries around a select few. Their hair is always fashioned like something you might see in the Hunger Games capital. She eats fish sticks for breakfast every morning and will put ketchup on almost anything.
The girls ground my family. My parents can’t jump on a plane and visit me in Africa because of their responsibilities to my sisters. The girls are more susceptible to sickness. We’ve gone through the wringer more than once regarding their health.
But they bring constant laughter and joy into a family dynamic that really needed it. They are resilient. At times they are able to calm the hotheaded males in my family. They are integral and I can’t imagine having lived life without them.
Many people in America are making that very choice though. Down syndrome is the most commonly diagnosed genetic defect in the US. Eighty percent of women who are told their child will be born with Down syndrome choose to abort. Fueled by misinformation and sometimes selfishness, they reject a beautiful gift.
Though my sisters are completely unique individuals and I love them for them, I do carry around a special place in my heart for any person with Down syndrome. Which is why I was so touched last night.
I attended a wedding ceremony with some friends from another town. This particular ceremony is mostly made up of women. Women compose the entire drumming circle and sing the traditional songs. Dancing women make up the audience. The men of the bride and grooms family sit on the stage. They are outnumbered twenty to one by women, at least.
I wasn’t really looking forward to attending because it didn’t start until 9pm, the music is loud, I never understand what’s going on and my only role is to be stared at and give money at the end. Therefore, I was pretty stoked when I got to sit in the drumming circle and play a drum. Sure that probably meant even more eyes were on me, but at least I had a purpose.
An hour or so into the ceremony, I noticed one of my friends grab a chair and put it in the center of the drumming circle. Then in saunters a man dressed in a ratty t-shirt and shorts. He sits in the middle of a giant circle of women, bold as brass. He has Down syndrome. The leader of the drumming circle immediately stood up. I sat transfixed, waiting for her to shoo him away, treating him as worthless like I’ve seen in many of the countries I’ve visited. Instead she walked up to him, leaned over to give him a hug and gave him a drum on which he immediately started beating…completely on rhythm. Tears filled my eyes. I tried not to be rude as I picked up my iPhone and started snapping pictures.
He stayed in the circle beating away at his drum the rest of the night. I asked a friend about him. Who is he? Why is he here? His name is Ely and he’s a town favorite. No, she amended, he is an island favorite! He has a family but he is welcome to eat wherever he wants in town. Families welcome him into their homes and spend time with him. He has even accompanied the drumming circle to the main island to play at a wedding there. Ely is well liked and well treated by all in this town.
“Blessed is he who has regard for the weak.” Psalms 41:1.
I could do nothing but marvel and bless the Clove Island people last night. They do not hold to Darwin’s survival of the fittest. Despite his disability, Ely is given respect and an honored place within the drum circle. He is not feared or treated with kid gloves. He is treated like the exceptional, talented human being he is.
To Amy and Jenna and Ely, you are a special gift. God gives special children to special people. May all future mothers and fathers of these special children remember that too.