Lifestyle Insights
By: Jamie Thompson
Thirty-five years ago, my older brother, Alex, entered the world with a rare genetic condition known as Cornelia de Lange Syndrome. This diagnosis brought with it a host of challenges.
Alex navigates a world filled with nuances he cannot fully grasp. His everyday activities require more effort and bravery than most can fathom. He confronts judgment and discrimination regularly; people often stare or whisper. Ultimately, he resides in a body that does not function as it should. He is acutely aware of his situation and could likely detail the myriad challenges stemming from a chromosomal anomaly that occurred during his conception.
Many of us can empathize with the difficult circumstances Alex faces. While it might be easy to surrender in the face of such adversity, Alex chooses to fight. Each day, he exemplifies resilience, strength, and unwavering determination. He greets each morning with hope, ready to tackle any challenges that arise.
Despite the numerous hurdles in his path, he never retreats. He does not allow bitterness to consume him, nor does he indulge in self-pity. Strikingly, throughout our years together, I have never once heard him complain about his obstacles or the hand life has dealt him.
Alex is the kind of person who would spend his savings to buy a plane ticket just to accompany you and your children, ensuring you don’t have to fly alone. When he witnesses you having a rough day, he responds with, “It’s okay, we all have bad days.” When my spouse had to leave for a week of work, he volunteered to stay with us, guiding my anxious son to and from kindergarten on his first week of school.
He is always willing to help, if he believes it might lighten your burden. His kindness, calm demeanor, and genuine helpfulness humbles me. Witnessing someone who has every reason to be upset choose compassion and love is truly inspiring.
I often wonder if I could exhibit such bravery. I might have succumbed to bitterness and anger—emotions I’m sure Alex has felt at times—but when the moment calls for it, he consistently opts for strength and kindness. Every. Single. Day.
Discussing my brother’s challenges hasn’t always been easy for me. I regret to admit that, in my youth, I felt embarrassed about Alex’s differences. I longed for a “normal” brother like my friends had, and my frustration often overshadowed my understanding. These feelings still sting today, but I recognize they were part of my journey and growth.
From the beginning, Alex has been my greatest teacher. As I waited patiently while he completed his morning routine, he taught me the value of patience. When I lost my temper over his inability to recall a message and he simply said, “I’m sorry, my brain doesn’t work right,” he taught me humility. When he confronted my high school boyfriend for treating me poorly, he illustrated unconditional love.
Most importantly, his tenacity, even towards someone like me, has imparted a profound lesson on true courage.
I often reflect on how fortunate I am to learn from Alex. Out of all the families in this vast world, ours was chosen for this experience. The lessons he has shared are invaluable—strength, resilience, and perseverance.
He has shown me the importance of perspective, helping me appreciate my own abilities and blessings. He has instilled in me a deep sense of empathy and the recognition of every individual’s worth. Above all, he has demonstrated that even in moments of despair, when it feels impossible to continue, one can still push forward. I know this is possible because he does it daily.
My mother often says, “It’s easy to maintain composure at the top, but true character is revealed when faced with adversity. Strength and resilience grow when tested.” This perspective aligns perfectly with Alex’s daily life, and if you ask me, he’s hitting close to a thousand.
When people inquire about my motivation in life, the answer is invariably Alex. He is my inspiration and the reason I persist. If he can confront each day with courage, I have no excuse not to. I am immensely proud to call him my brother. His strength and grace in facing challenges are awe-inspiring.
It’s remarkable to witness someone thrive despite overwhelming obstacles without ever surrendering. He is enhancing this world by embodying what true determination looks like.
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Summary
Growing up with a brother who has special needs has taught me invaluable lessons about resilience, empathy, and the importance of kindness. Despite the challenges he faces daily, his unwavering spirit inspires me to approach life with strength and determination. Alex’s journey serves as a powerful reminder of the true meaning of perseverance.