My brother, whom I will always see as five years old, embodies a state of perpetual childhood. He isn’t immature; rather, he is a man trapped in a child’s mind. Born with a genetic disorder that causes seizures, constant hunger, slurred speech, aggressive behavior, and significant cognitive delays, it wasn’t until he reached his 30s that he was diagnosed with Prader-Willi Syndrome, a rare intellectual disability linked to a single faulty gene on chromosome 15. My mother believes there might be additional underlying issues, possibly stemming from his breech birth when his umbilical cord was wrapped around his neck, potentially causing brain damage. He was a floppy infant who seldom cried. She chose the name Ethan, a strong name, but she insisted that nobody call him “Eddie.”
Ethan requires around-the-clock supervision; he has never been left to his own devices. This dynamic led me, as his younger sibling by three years, to quickly assume the role of the more capable sibling, the “normal” one. Strangers would often point to me as a source of consolation for my mother, saying, “At least you have this beautiful little girl.” Growing up in the ’70s, having a sibling with disabilities was seen as a burden, and I was the supposed remedy for that pain. My parents later welcomed another “typical” child, but that didn’t erase their grief. Their shattered hopes turned into resentment, lies, and anger, leading to my father leaving when I was just five.
Recently, I visited a friend whose newborn daughter was diagnosed with Down syndrome. She proudly placed her fragile baby in my arms, carefully managing the oxygen tube that accompanied her. In her early life, this girl was perilously close to death, facing a range of medical challenges including heart defects and intestinal issues. Yet, with the dedication of neonatal nurses and her mother’s tireless care, the baby survived. My friend brought her daughter home with oxygen tanks and detailed manuals to ensure she thrived. Even at two months, the little girl’s gaze was compelling, urging me to love her, which I wholeheartedly did. I couldn’t help but wonder if my parents had felt this same profound affection for Ethan before life became overwhelming.
My friend’s baby girl’s extra chromosome was an unexpected twist, leaving her with a multitude of unknowns about her future. She sought my perspective as a sibling of someone with special needs, asking, “Is this a blessing or a burden?”
I found myself hesitating. My experience growing up was laden with an overwhelming sense of responsibility—not only to compensate for Ethan’s limitations but also to be entirely self-sufficient. I felt that if he was the special needs child, I had to be the one with no needs. The challenges of tantrums, violence, and financial struggles were constant companions in my childhood. Should I share this with her?
Despite my search for relatable narratives from families of special needs children, I found many parents celebrating the unexpected gifts their children brought into their lives. While I admired their sentiments, I realized my feelings were often quite different. For typical siblings, the relationship is inherently layered with complexity. Rivalry for parental attention, love, and resources is common, and having a disabled sibling amplifies these feelings. I often grappled with guilt for the abilities I possessed that Ethan did not—being able to ride a bike, attend sleepovers, and participate in sports, while also feeling deprived of experiences due to his condition. I remember the embarrassment of him walking into my first slumber party completely naked and the pressure I felt to look after him as if I were another parent.
Teachers often told me how fortunate I was to have a brother like Ethan, claiming he was special and that I would learn life lessons from him. While I understand their perspective now—that I did gain insights into humanity and compassion—I can’t dismiss the heavy burden it placed on me.
As Ethan grew, he became more volatile, struggling with the hormonal changes that his mind couldn’t process. He was physically strong and would lash out, breaking furniture and causing chaos in our home. My mother, working multiple jobs, left me to navigate this turmoil. Her response to the bruises I sustained was often dismissive, rooted in fear and helplessness.
With adulthood came new fears. At 21, Ethan aged out of public special education. What would his future look like? Where would he live? Who would care for him when my mother could no longer manage? As he cycled through group homes—often being expelled due to his behavior—I felt a growing anxiety about his fate.
One winter night, I received alarming news: Ethan had choked and gone into cardiac arrest, requiring resuscitation multiple times. The mix of fear and guilt hit me hard. I had often hoped for easier circumstances, even to the point of imagining a world where his absence would relieve the burden. Yet, when I heard he was in critical condition, the confusion of emotions flooded back. I wanted him to survive; I wanted my brother.
After booking a flight to see him, I took my infant son along, leaving my daughter with my husband. By the time I arrived, Ethan was stable, and my heart was filled with relief as we shared a joyful reunion. We bonded over his hospital food and the flowers he received. Our sibling connection, despite the chaotic past, persisted.
In the end, the sibling relationship is a complicated tapestry woven with both love and pain. I don’t know what the future holds for Ethan, but I’ve learned that love and trauma can coexist. My feelings toward him are multifaceted, and that’s okay.
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Summary
This article reflects on the author’s experiences growing up with a special needs brother, highlighting the complexities of sibling relationships, feelings of ambivalence, and the impact of responsibilities that arise from having a disabled sibling. It explores the emotional struggles and insights gained through such a unique relationship.