By: Emily Carter
Updated: Aug. 3, 2016
Originally Published: Sep. 14, 2012
My brother is, and will always be, five years old. It’s not that he’s immature; he’s a young mind trapped in a 40-year-old’s body. Born with a genetic condition that leads to seizures, an insatiable appetite, slurred speech, and severe developmental delays, it wasn’t until he reached his thirties that we finally understood his challenges were due to Prader-Willi Syndrome, a rare genetic disorder linked to a defective gene on chromosome 15.
My mother suspects there are additional issues at play, believing he may have suffered brain damage during birth when he was breech, with the umbilical cord wrapped around his neck. He was a floppy baby, hardly crying. She named him Ethan—a name she loved, one that carried depth and history. She never allowed anyone to shorten it to “Eddie.”
Ethan needs constant supervision. His entire life has been spent under the watchful eye of family, and as I grew up just three years younger, I quickly stepped into the role of the “older sibling.” I became the one who was less fragile, the “normal” one, while Ethan remained the focus of my parents’ attention.
In the 1970s, having a child with a disability was seen as a tragedy, and I was often held up as the shining example of what my mother had: a “perfect” daughter. When my parents later had another typical child, my younger brother, it didn’t erase their grief. Disappointment morphed into resentment, leading to family strife. My father moved out when I was just five.
Recently, I visited a friend who had just welcomed a baby girl diagnosed with Down syndrome. With a mix of pride and concern, she placed her delicate child in my arms, carefully draping an oxygen tube over my shoulder. This little girl had fought through a challenging start, facing multiple surgeries and health complications. With each passing day, however, she thrived, her tiny body radiating strength and courage.
As I held her, I couldn’t help but reflect on my own experiences with Ethan. My friend, hopeful yet anxious, sought my insight into what it was like to grow up with a sibling who had special needs. “Is it a gift or a curse?” she asked, her eyes searching for clarity.
I paused, knowing the weight of my answer. For me, growing up alongside Ethan meant bearing the heavy burden of responsibility—not only to compensate for his limitations but to be entirely self-sufficient. I often felt that if he was the special needs child, I had to be the one devoid of needs. But along with that came challenges: the tantrums, financial struggles, and my mother’s deep-seated sadness. Should I share these truths with her?
I’ve read countless articles and personal accounts from families with special needs children, many of which celebrate the unexpected blessings that come with the journey. While I admire their stories and the growth they express, my experience has been more complex. Growing up with a sibling who had challenges often left me feeling ambivalent. I grappled with guilt for the things I could do that Ethan couldn’t, like ride a bike or go on playdates, while simultaneously resenting the limitations placed on my own life due to his needs.
Teachers told me I was lucky to have a brother like Ethan, suggesting that he would teach me invaluable life lessons. Reflecting on this from an adult perspective, I realize they were right—I learned early that humanity is frail and imperfect. I witnessed both great kindness and harsh cruelty from others. Yet, these lessons were thrust upon me rather than chosen; they came with pain.
As Ethan grew, his behavior became increasingly volatile. Surges of aggression often erupted unexpectedly, resulting in broken furniture and damaged walls. My mother, overwhelmed, relied on me to protect my younger brother from Ethan’s outbursts while she juggled multiple jobs. It was a heavy load for a child.
In adulthood, the challenges evolved. By the time Ethan turned 21, he had aged out of public special education programs. How would he spend his days? Where would he live? Who would look after him when my mother could no longer do so? The uncertainty weighed heavily on my mind.
One winter night, I received a frantic call: Ethan had choked and was in the ICU. My heart raced as I thought about the years spent wishing for a different life. I found myself grappling with a troubling thought—that it might be easier if Ethan were no longer alive, sparing him the indignities of institutional care.
Despite this turmoil, I love my brother deeply. I yearn for him to thrive, even as I contemplate the burdens that come with our relationship. When I finally visited him in the hospital, I found him stable and cheerful, chatting about his favorite foods and the flowers he received. In that moment, my heart swelled with love and relief.
Sibling relationships are complicated, and mine with Ethan is no different. I have no clear answers about our future, but I now understand that love and trauma can coexist. As long as he is with us, I can embrace the complexity of being his sister.
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In summary, my journey as a sibling to a special needs brother has been filled with mixed emotions and profound lessons. While the challenges can feel overwhelming, the love we share endures, highlighting the complexity of family relationships.