My brother will always be five years old in many ways. It’s not about immaturity; it’s about being stuck in a moment. He has a young mind but resides in a 40-year-old man’s body. Born with a genetic disorder that causes seizures, insatiable hunger, slurred speech, and severe cognitive delays, he was diagnosed with Prader-Willi Syndrome in his 30s. My mom believes he may have other undiagnosed issues too, possibly stemming from a breech birth that left him with a cord wrapped around his neck. As a floppy baby who rarely cried, he was named Ethan—a name that felt grown-up and smart, reflecting the hopes my parents had for him. My mother made sure nobody ever called him “E.”
Ethan requires constant supervision. He has never been alone, which meant that even though I’m three years younger, I quickly became the older sibling, the sturdier one, the “normal” one. Strangers would often comfort my mother by saying, “At least you have this beautiful, perfect girl.” In the ’70s, having a disabled child felt like a burden, and I was the antidote. Later, my parents had another “typical” child, my little brother, but their sadness didn’t vanish; it morphed into resentment and frustration. My dad left by the time I was five.
Recently, I visited a friend who welcomed a newborn diagnosed with Down syndrome. As she proudly placed her fragile daughter in my arms—carefully draping an oxygen tube over my shoulder—I felt a rush of emotions. This baby had fought through life-threatening challenges, and now she was home, surrounded by oxygen tanks and instructions on her care. Even at just two months old, her gaze seemed to ask for love, and I was more than happy to oblige. I found myself wondering if my parents had felt the same way about Ethan before everything became complicated.
My friend was filled with uncertainty about her daughter’s future—when would she hit milestones? Would she achieve them? How would her other child—her “normal” one—fare in this new reality? While she sought my insight on being a sibling to someone with special needs, I hesitated. The truth is, my experience with Ethan has always carried an immense weight. I felt compelled to compensate for his limitations while suppressing my own needs. There were tantrums, financial struggles, and my mother’s deep-seated depression. Should I share this?
I’ve read countless articles from families with special needs children, many of whom describe their experiences as profound blessings. I understand that perspective, but for many siblings like me, it’s not so clear-cut. Growing up with a brother like Ethan taught me that family dynamics are often tangled. While siblings are typically rivals for their parents’ attention and love, having a brother with disabilities adds layers of complexity. I often felt guilty for being able to do things Ethan could not—ride a bike, date, or go to parties. I was embarrassed when he showed up at my slumber party in the nude, and I resented the expectations placed on me to act as his protector.
I still remember a teacher telling me how lucky I was to have a brother like Ethan, who could teach me lessons no other sibling could. Looking back, she had a point. I learned early on that humans are imperfect and vulnerable. I witnessed both remarkable kindness and harsh cruelty, which revealed that “normal” is just a relative term. Yes, I gained patience and compassion, but they were lessons I never sought.
As Ethan grew, his violence escalated. He became strong, and his emotional control didn’t keep up. I had to babysit not just him but my younger brother while my mother juggled multiple jobs. Though she often acknowledged the bruises I bore, her response was typically to downplay the situation—after all, he couldn’t help it. I realize now that her fear kept her from taking action.
As I grew up, I began to understand my teacher’s words differently. Lucky? I felt anything but. I felt burdened, invisible. My problems seemed insignificant compared to Ethan’s condition. Any struggles I faced were dismissed as part of the package deal of having a brother with special needs.
As an adult, new worries emerged. By the time Ethan hit his 20s, he had aged out of public special education. Where would he go? What would his life look like? I wrestled with thoughts of who would care for him when my mother is no longer around. The cycle of placing him in group homes turned into a revolving door of disappointment, usually due to his behavior or issues with staff.
One winter night, I received alarming news: Ethan had choked and gone into cardiac arrest. In the ICU, he was fighting for breath, a victim of the medications that had been his lifeline for so long. As I processed this, I confronted my conflicting feelings. I had wished for more manageable circumstances, even thought about how it would be easier if he were no longer with us—selfish, I know. But at that moment, I realized how desperately I wanted him to live.
After booking a flight to see him, I took my infant son along. By the time I arrived, Ethan was stable, and my heart swelled with relief. His joy at seeing me made the journey worthwhile. We chatted about the hospital food, and he even played with my son.
The sibling bond is complex and enduring. I don’t know what lies ahead for Ethan, but I now understand that love and trauma can coexist. The affection I felt for him in that moment didn’t erase our past; it highlighted that both love and struggle are part of our shared story.
If you’re interested in more about the complexities of family dynamics and the journey of parenthood, check out this insightful resource. And if you’re looking for help with at-home insemination options, this is an excellent authority on the topic. Additionally, this is a fantastic resource for those dealing with pregnancy and home insemination.
In summary, growing up with a brother who has special needs shaped my outlook in ways that are both profound and challenging. It taught me valuable lessons about empathy and resilience but also left me grappling with feelings of ambivalence and responsibility.