Twain said, “The two most important days in your life are the day you are born and the day you find out why.” There is always one moment in life that completely alters someone’s course.When I was nine, my biggest concern in life was if I was going to be picked first at kickball during recess. Living a seamlessly normal life, in third grade, playing soccer with my best friend, sleepovers, beach days, and Sunday night movies with the family. Everything seemed like it was a perfect life that couldn’t be better. Then my mother became pregnant with baby number three, which is when my whole life turned upside down.
My baby sister was born with Edwards Syndrome or trisomy 18, a chromosome defect that affected everything down to the DNA. About 50% of babies in her condition never ever make it home, and about 90% never make it to their first birthday. Babies that do survive have serious health problems, many issues with the lungs and heart. We already knew my sister had two holes in her heart, and that she was extremely small. Doctors said she would live on tubes and never make it home. So before my sister was even born I had all these prejudgments, and preconceived ideas on how she was going to be.
But those stats and facts about her all faded away, like a fog had been lifted, on the day she was born. She was perfect, with her small pink toes and big blue eyes. One look at her and I knew we were going to be okay. That there is a person behind all these statistics and facts, and that numbers underestimate the human spirit. This was beginning of a journey, not the end of one.
She came home after three days in the hospital, she weighed 3 lbs and 12 ounces, she had a feeding tube but that was all, almost normal. Our old seemingly carefree life now became about doctors’ appointments, bottles, physical therapy, and heart meds. But it was worth it, my sister became the heart of our family, we became her biggest cheerleaders, celebrating every day. And days became months. Months became years. She learned to sit up and stand, and roll. She even attended school, graduating to first grade. Everyone loved her, and she loved everyone; she had this light about her you couldn’t ignore. Her smile could melt your heart and her laugh could brighten any mood. Even when she would get sick she would laugh and dance in her hospital bed. Nothing but joy emanated from her spirit.
My sister suffered beautiful for seven years and as I later learned, my relationship with her was that I was the student and she was the teacher. She taught me to love life and the all the people in it. That no one can define who you are as a person, you can be whoever you want to be regardless of the obstacles in your way. She helped me realize my “why”.
Broken but Beautiful 