“Each year 6,000 babies are born with Down Syndrome in the United States.” This means that one out of every 700 babies is born with Down Syndrome making it the “most common chromosomal birth defect.” Yet, the opportunity to see life through their eyes, is something no one can forget.
Ever since we were kids, she loved to sing and dance. I remember dress up and holding microphones screaming at the top of our lungs. As I grew up, I began to care about what people think and stopped singing but Alex never did. Our mothers have been friends since we were born, they did Lamaze class together. Even living on opposite sides of the state we all still manage to see each other a couple times a year. One year, when we were sixteen Alex and her mother came to visit.
“Amba!” She screamed as she ran up the lawn to hug me as soon as she possibly could. Her small stature, but strong arms hugged me tight. She looked up at me sweat dripping down her face as she pushed her glasses back up, "I missed you!" I could see tears collecting in her eyes, our greetings are always raw and genuine. We Immediately ran to my room with all her things in tow. As I quickly tidied up, she opened her notebook and I knew band practice had begun.
“Alright, Amba, I have some new songs and you got to learn them, okay?” Alex had been writing songs ever since I could remember. Her father had just bought her a guitar that she was slowly learning, the newness was evident in many of her songs, but there was no lack of passion. I responded, “Okay, sing them for me."
“This song is called ‘Remember Me”’ She pulls out her guitar, adjusts a few nobs, pushes up her glasses then looks up at me, “Are you ready, Amba?"
I moved to my knees to sit on the ground at her feet. I am her audience. “I am ready, Alexandra.” She then sings a beautiful song she has written regarding the importance of being remembered, and how Jesus will remember.
"…And other days, I am alone, you are not far behind. And I will not leave here unknown."
Her somewhat off key, but powerful vocals, were sung to the strum of her desired strings. Between jumbled words, her message was clear: we will all be remembered by someone. I clapped because I always clap, but her song truly moved me. It stayed in line with her typical Christian Rock genre. Even though she only dances to Hip-Hop. “Thank you,” she bowed, “Now call the rest of the band mates and tell them to get over here now.”
I jumped up taken back by her tenacity. “What are you, uhm, talking about?”
“Joey, Peter, they say they play guitar and piano.”
“I mean, yeah, they can, I’ll see what they are doing.” My face turned red in nervousness about singing in front of my friends, even if I was singing with Alex. She gets up and walks down the hall yelling something behind her like the band’s front man.
I called Joey and Peter as instructed, and they both agreed to come over. I’d secretly wanted them to say no, but everyone knew it was hard to say no to Alex, because she really wanted you there.
Being near a person with down syndrome has taught me that people matter. I have never felt as important as I do to my friend Alex.
That weekend we practiced every day. I had been demoted by Alex from singer to maraca player. I was embarrassed, but relieved. They boys listened to her every demand and made up melodies for her to sing and yell along to. Sometimes she would get excited and sit by Joey trying to scoot really close to watch his hands glide along the piano.
Her last day in town she had called for a show. She invited all the parents, and any friends that came over that week. I always played along, thinking to myself, “Yeah right, it won’t happen, why not pretend?” But to my surprise, Sunday night rolls around and the living room was full of people. I was in shock. Never had one of our “shows” turned out like this. Alex was so excited she called us all into an important band meeting in the kitchen.
“Okay people, this is a full room and they want a good show, what are we going to give them?” as no one answered she began to glare, staring down around the circle with her lower lip disapprovingly rolled over her upper lip.
“A good show?” Peter said non-cholent.
“Yes! Okay, hands in, I love music on three. 1...2….3….”
We all yelled in unison, “I love music!”
We entered a dark living room heads down, without speaking, we stood motionless until Joey struck a cord and Alex, the obvious band leader yelled,
“Hit it boys.” I forgave her for this exclusion, but I knew how bad she wanted to say it.
The show was perfect. We threw in some tricky light effects, with a manual strobe light. Meaning I stood by the door and switched the lights on and off really quick. We played four songs then Alex’s mother chimed in cutting the show short. Knowing it would never end if it was up to Alex.
“Okay, fine, mother, Amba, can you please join me at the front.” She kept a straight face as I scurried forward with my maraca in hand. “Guys, this is my long-time, sister, best friend, always here for me, girlfriend, Amba.” Then she stepped aside and presented me like I had something awesome to say. I awkwardly waved, then it got silent. She looked at me and nods toward the microphone as she hands it to me, “together.” I was terrified as we sang, “in unison” the words to her “Remember Me” song and received a standing ovation.
Those with Down Syndrome get the chance to see the world a little different and everyone would benefit from spending time with someone who has such honest friendliness and joy for life. Most people think when someone is labeled disabled it means “normal” people need to help them, as that is sometimes the case, in my experiences with Alex she teaches me to be confident in myself unafraid of what the world thinks. I learn from her every day.