By: Olivia Hudson
My brother will always remain five years old in many ways. This isn’t a matter of immaturity; rather, he is a young mind trapped within the body of a 40-year-old man. Diagnosed later in life with Prader-Willi Syndrome, he faces a range of challenges including seizures, cognitive delays, slurred speech, and extreme behavioral issues. My mother often speculates that he may have additional undiagnosed difficulties stemming from his breech birth, where his umbilical cord was wrapped around his neck. He was a floppy baby who didn’t cry, and she chose the name Ethan—a name she felt was strong and dignified, and she would never allow him to be called “Eddie.”
Ethan requires constant supervision. Throughout his life, he has never been left alone, which means I, being younger by three years, have taken on the role of the older sibling. I became the one who people would refer to as the “normal” child, often receiving unsolicited sympathy for my situation. Growing up in the ’70s, having a sibling with a disability often left me feeling like a consolation prize. My parents later welcomed another typical child, but this did not alleviate their sorrow. Their dashed hopes for Ethan transformed into frustration and turmoil, leading to my father leaving before I turned five.
A recent visit to a friend with a newborn diagnosed with Down syndrome stirred up many emotions for me. Holding the fragile baby, I watched the love and hope radiate from my friend as she shared the trials her daughter had faced shortly after birth. Each breath was a miracle, and the care she provided was nothing short of heroic. As I held the baby, I couldn’t help but reflect on my own feelings about Ethan. My friend’s questions about what it’s like to be a sibling to someone with special needs hit home. “Is it a blessing or a burden?” she asked, seeking wisdom from my experience.
I found myself pausing. The truth is, growing up alongside Ethan meant bearing a heavy burden of responsibility. I felt compelled to compensate for his limitations while ensuring I was never needy myself. The tantrums, the violence, the financial strains, and my mother’s pervasive sadness all contributed to an environment where my needs were often overlooked.
I have read multiple articles from families of special needs children that express how those experiences bring unexpected blessings, teaching patience, empathy, and love. While I understand and appreciate these sentiments, many typical siblings might not share the same feelings. Sibling dynamics are inherently complex, often marked by rivalry for parental attention and resources. With a special needs sibling, this complexity deepens. I frequently experienced guilt for being able to do things Ethan couldn’t—ride a bike, make friends, and date. Simultaneously, I mourned the things I couldn’t do because of him.
I vividly recall a teacher proclaiming how lucky I was to have Ethan as a brother. In hindsight, I recognize the truth in her words; I learned early on about human vulnerability and the spectrum of kindness and cruelty that exists in the world. Yet, these lessons were thrust upon me without choice.
As Ethan grew older, his behavior escalated. He became physically aggressive, and I often found myself in the role of protector. My mother worked tirelessly to support us, leaving me responsible for managing Ethan’s outbursts. Her reluctance to address his violent behavior stemmed from her own fear and helplessness.
Now, as an adult, I have grappled with the implications of Ethan’s condition. At 21, he aged out of public education, leaving us with questions about his future. Where would he live? How would he spend his days? As my mother grew older, the burden of his care weighed heavily on my mind. I often wished for clarity on what lay ahead but found none.
When I received a call one winter night about Ethan’s cardiac arrest, I was struck by conflicting emotions. I wanted him to live but also wished for the ease his passing might bring. I know how selfish that thought is, yet it lingers. I love Ethan deeply, but the reality of our relationship is fraught with tension and worry.
After a harrowing experience, I flew to see him, buoyed by relief when I found him stable. Our connection, while complicated, remains unwavering. I realize that love and trauma can coexist; my feelings for Ethan can be multifaceted.
The journey of siblinghood, especially with a special needs sibling, brings challenges and rewards, often intertwined. It’s a unique path that shapes lives in unexpected ways, revealing lessons about resilience, compassion, and the complexities of human relationships.
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Summary
The experience of growing up with a special needs sibling is complex and often filled with ambivalence. While there are moments of love and connection, the weight of responsibility and societal perceptions create a challenging dynamic. The journey encompasses both the painful realities of family life and the invaluable lessons learned through hardship.
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