Perhaps the greatest lesson Alexa has modeled for me is a pristine character with its absence of dark motives. She embodies, and thus models, unconditional love. My younger son Erol once said that Alexa taught him that a person can just be happy, plain and simple, with nothing: no material wealth or power, none of the abilities or skills that mainstream society tends to idolize. Alexa lives effortlessly in the moment, just as Eckhart Tolle teaches us to do in his book, The Power of Now. When I am with her, I am reminded of the importance of living in the moment. She also motivates me to think about how a person of golden character might behave. Never will Alexa be tempted to utter a snarky remark about someone’s appearance or spread any gossip, nor will she look down her nose at someone’s social status or personal choices. Though she will live, laugh, and celebrate with us, Alexa will never manipulate, deceive, or betray. She is immune to the sin of all of the -isms (such as racism, sexism, and materialism) and has no motives that are not honest and pure in nature. Her subtle and sincere expressions of love are given freely and unconditionally. As my father notes, Alexa loves her people. “You can see it in her eyes, especially when she’s with her mommy,” he says.
Alexa actually did give me a material gift once, when she was a teenager, probably the only one I will receive from her in our shared lifetime. It is a piece of art. The medium is black crayon on a sheet of white copier paper. Clearly, she worked hard to decorate the page from edge to
edge with bold and intentional strokes in such a dramatic color. One of the aides in her special educational classroom prompted her to say the name of someone to whom she wanted to give the drawing. “Aunt Kara,” Alexa must have said, because the aide wrote it down on the paper, even though she had no idea who Aunt Kara was. But Alexa did. Somewhere in the mysterious workings of her mind, Alexa thought of me, chose me, and wanted me to have something she had created with her own hand. My mother brought it to me after one of her respite visits to Northern California where Mark and his family live. She came to my house and announced that she had something to deliver to me from Alexa. I could tell from her tone that whatever she had was something extraordinary. And indeed, it was. It was not just the artwork itself, but Alexa’s gift in choosing to give it to me that broke my heart open in the most beautiful way. •
"Alexa has no motives that are not honest and pure in nature. Her sincere expressions of love are given unconditionally."
ABOUT THE AUTHOR:
Kara Ayik is mother to sons Erol, age 19, and Evren, age 21. Evren lives with Acid Sphingomyelinase Deficiency (ASMD), an ultra-rare genetic disease. In 2021, Evren and Kara published the book Extraordinary! A Book for Children with Rare Diseases to uplift and encourage children around the world who live with rare diseases. Kara has also published a number of blog articles about rare disease advocacy and rare parenting. Her interests include native flowers and hummingbirds, world cultures and languages, health literacy, and advocacy for children and the environment. Currently, Kara works as a lecturer at the University of California, Merced.
CEREBRAL PALSY LEARNS
EDUCATING STUDENTS WITH CEREBRAL PALSY / BY ADINE RAY USHER, EdD
"Dr. Usher's authoritative guide will provide vital information and practical tools to any teacher, administrator, or school staff member who works with and supports a student with cerebral palsy." — Kristen Backus, special education teacher
"These interventions foster improved student progress, promote greater student independence, and enhance the quality of a student's life." — Richard Ellenson, former CEO of the Cerebral Palsy Foundation