This story first appeared in the Information Point newsletter Our World in 2010 when Mikaela Manny, was a junior at Claremont High School, in Claremont CA, USA. Her brother Luke, diagnosed with x-linked myotubular myopathy, was soon to be three years old.
Mikaela wrote a paper about Luke, as an assignment in her Advanced Placement Composition course. Her instructor then submitted the essays to the City of Claremonts annual all city essay contest, a contest for all ages sponsored by the city, in which Mikaela’s essay was chosen as a winner. Mikaela was presented with her award on 30 October at the Claremont Library. She was asked to bring her inspiration, Luke, to the ceremony, where she presented the piece publicly. Mikaela’s prize winning work can be found below.
December 28th of 2007 was the most life changing day of my life, I just didn’t know it. Itwas around five o’ clock in the afternoon when my grandmother called me frantically. She was so upset, her words were slurred into an foreign unknown language. I could barley understand the words coming out of her panicked mouth, but the words I could hear shocked me beyond belief. From what I made out of it, I heard my grandmother saying that my brother, Luke was being born, but there were serious problems. I waited for more information to process but, I couldn’t make anything of what she was trying to tell me. Me and my aunt were clueless. Nobody called to update us for hours. Once midnight hit, we received a more calm call. It was my grandmother again. My aunt answered the phone, only to be disappointed, and she was. After she had got off the phone with my grandmother, she told me to take a seat. I knew something had to have been wrong. She told me not to panic, but my brother was in the Neonatal Intensive Care Unit (NICU). Luke was born blue, but had a pulse. He was rushed down to the NICU within seconds of birth, leaving my family panicked, and distraught. Brain tests were ran, and Luke scored a flat zero. Yet, my parents still believed there was still a baby within the blue, weak body. They demanded for a second test, and those results showed a hundred percent brain activity. Luke was a “miracle baby” as said the Neonatologist.
From that moment on, Luke lived in the NICU. He spend six months fighting for his life, to find out that he was struck with a life disabling disease called Myotubular Myopathy, a rare, cousin disease of Muscular Dystrophy, that traps the muscles in an embryonic stage. He will never walk, he cannot breathe on his own, and he uses a ventilator to breathe through tracheotomy (hole in his throat), uses a wheelchair, and depends on everyone to take care of all of his needs. Yet is the smartest little boy I know. From this moment on, my life has never been the same.
At only twelve years old, my life was turned completely upside down. My house had transformed into a hospital. I never thought in a million years that I would ever have a brother who has special needs, yet it happened to my family. Dealing with this new lifestyle was a challenge. Sacrifices were made that I thought I would never have to make. New people were forced into my life, as my brothers’ nurses around the clock. These new things scared me. I had never seen a person on life support before, and now I will have someone on it, living with me. All the different medications and tools sounded so weird to me. Not to mention all the bells, whistles, and alarms that come with all his medical equipment. I felt like my life had turned into a course in medicine. I hated the thought of change. I enjoyed my previous life, and all the things I never had to worry about. Yet, there was no turning away from this.
The first days of Luke’s arrival at home, took a toll on me. The beeps and pops pushed buttons that I never knew I had. I would get angry at my family about the stresses of my new lifestyle. I never crossed my mind that I was in the wrong for complaining about my life. However, I never took into consideration, all the pain my mother and father felt every time they had to stick a tube down his throat just to help him breathe.
I soon found the compassion for my brother deep in my heart, when I saw other kids look up to me because my life was so abnormal. I never thought about how important my brother was to me, or how much of his life was mine. It changed my way on how I saw things. My new lifestyle opened my eyes to a new world. I had a new appreciation for the smallest things. I developed a new stronger love to sing and dance knowing that I was lucky enough to have the benefit to do so. I learned to cherish moments with my family, knowing that some people don’t have the chance to walk down stairs to say a small, simple “hello”. I also changed how I treated myself and my body. Having this new perspective on life benefited me beyond my eyes.
Before Luke, I saw life as just another day. Another tedious, annoying, day. I never appreciated anything, and I couldn’t take no for an answer. Luke opened my eyes to my mistakes. I soon learned, and still continue to learn, how to not take life for granted, because you never know when your time is up. He opened new doors to different and exciting paths that I would have never seen without him. Luke let me see how grateful I truly am to be able to do the simplest things in life. Luke became the biggest part of who I am today. He made the compassionate, caring, selfless girl everybody else see’s. I would never regret the pain and suffering we went through in a million years. Because in the end, my troubles made the successful, strong person I am today. Who would have thought their life could be flipped, twisted, turned, and stretched all in one day. That day was the day of the invincible.