When I was young, I don’t think I fully grasped the concept that there was something “wrong” or “different” with my brother. Joe and I are exactly 1 year and 4 months apart, so I have no real recollection of the many surgeries he had to endure or the fact that he had to be fed through a feeding tube as a baby. As the older sister of a brother with special needs, I just took Joe for how he was instead of acknowledging his differences compared to other kids.
Joe was born with a birth defect that affected the blood flow from the left ventricle of his heart, which lead to him having multiple open-heart surgeries in his infant and early childhood years. As a result, he did not have enough oxygen going to his brain, and he was put on a heart and lung machine three times before he was even 6 months old. Due to this, Joe has developmental delays.
Growing up with a sibling with special needs comes with a unique set of challenges and blessings. When we were little, we did a lot of the same things together, including playing on the playground, watching the same television shows, and playing with our toys. As time when on, I started to move on to more complex games and TV shows while Joe didn’t. I began to realize the limitations Joe had made him different from other kids his age.
Joe required a lot of special attention from my parents to deal with his many issues, whether it was bringing him to frequent doctors’ visits for his heart or seeing a speech or physical therapist. I was often dragged along to these appointments and spent a lot of my time in doctors’ waiting rooms with the most boring games imagined. But that is how things were, so although I am sure I often complained, I began to accept it as a part of my life.
At a very early age I needed to learn about the virtue of patience that comes with having a brother with special needs. Joe would often have outbursts when learning new things he felt were too difficult to learn. My parents and I would have to reiterate multiple times the simple instructions of buttoning up a shirt or removing the cap off a water bottle. It took Joe a lot longer to learn these simple tasks that come naturally to most.
As we both got older, the way the world perceived Joe started to become more important to me. I think it is natural for older siblings to protect their younger siblings; however with Joe’s issues, I always seemed to take it more personally. I hated the way people would talk or ask about my brother when it was done with a sense of pity or discomfort. I don’t see Joe’s disability as a burden or a tragic event that happened to my family. Joe’s disability is part of him, and I don’t define him based on it.
Joe is the life of every party or event my family attends. Everyone always seems to know (or at least know of) my brother. He is friendly and welcomes everyone with open arms. He makes the effort to get to know everyone he comes in contact with, even the waiter at a restaurant. Joe loves music and hanging out with his friends. He thrives in any situation that involves him interacting with people. He enjoys watching football on ESPN and knows more about the sport than one would expect.
Although there are challenges that made growing up with a brother with special needs difficult, these experiences shaped me into the person I am today. Joe not only taught me patience in any situation, but also to have empathy toward others; that what might come naturally to one person might be a challenge for another. Joe’s issues also taught me a great deal about sensitivity to other people’s situations since everyone is fighting a battle that most people do not know about.
The most important lesson Joe taught me is, even though someone has a disability, this does not diminish their capability to make a difference in the world or teach others. Joe has taught me that no situation can ever be that bad, and happiness is a choice regardless of circumstance. Without being Joe’s older sister, it is hard to say that I would have gained these characteristics or learned these life lessons that are essential to the person I am today. And because of that, I wouldn’t change a thing.
Main image: Amanda Marrone with her brother Joe as young children
Courtesy Amanda Marrone