I heavily anticipated sisterhood all throughout my mother’s pregnancy. So when my brother Ethan came into the world four weeks before we expected, I was thrilled.
Just home from the hospital, I pleaded with my mother to let me hold his tiny body. Reluctantly, she placed the warm bundle in my arms and his presence overwhelmed me with certainty that I would never leave his side. I squeezed him softly and our souls melted together.
The months following Ethan’s birth, he had a doctor’s appointment nearly every week. There seemed to be things that weren’t right. When he was home with me, I chatted at him often while his earnest blue eyes panned all around the room. They never stopped to focus on anything, yet he always seemed to listen. We kept each other company, although I did all of the talking.
Nearing my fifth birthday and Ethan’s first, my parents sat me down to talk. Tears collected under my mom’s eyes while my dad wore his stress in the form of dark circles and a furrowed brow. They held hands tightly and their worries radiated onto me as the tension built. I always knew Ethan was different, but that day I learned my baby brother had cerebral palsy; a type of brain damage that prevented him from being able to talk, walk, see, or functionally use his arms and legs. I would realize as I got older that what that meant was he would never bicker with me, or slam his bedroom door in my face, or deny stealing any of my things. But at that moment, as my family sat motionless, confusion began to fester in my head as I wondered what this meant.
Times have been tough for Ethan over the years. Sometimes his muscles get so tense that it seems as if cement fills all of his joints. He has had to undergo several surgeries with nights in the hospital and weeks of recovery. Despite all the reason to whine, my cheerful little brother doesn’t let any of this hardship get in the way of his fun. He never lets being trapped in his own body stop him.
With support of agencies like The Arc of the Triangle, Ethan is able to do most of the things a typically developing twelve-year-old would do. He has support at home so my mom and dad can work. They help him with eating and dressing as well as playing- just being a kid. He evens plays soccer and football with support. He attends school and loves every minute of it. Obviously he has a modified education, but he never fails to contribute to the class discussion with his own way of communicating. We take him in the community often, pushing him around in his glossy green wheelchair, meeting new people everywhere we go. Kids are often drawn to Ethan like his core is designed of intense magnets and they have no other choice but to flock to him. Adults smile softly and stare, while others look at us sympathetically. Unaffected by people’s opinions, my brother just blabbers away in his own made-up language waiting for someone to respond. He loves the attention and is smiling all the while.
I wouldn’t change my brother if I could. Although his life is not typical, he chooses to live his fullest every day. His genuine spirit paints the life of each person he encounters and I am incredibly grateful to continue working on that masterpiece together.
The Arc of the Triangle provides a myriad of supports and services to children and adults with disabilities all across the Triangle. Your support enables The Arc to help an adult with a disability find a job in the community, or get a group of seniors with disabilities out in the community exercising and enjoying life. Or help a child like Ethan, just be a kid.
