As a parent, there are certain things you never want to hear. Comments like, “That baby looks strange. His eyes are unattractive,” can cut deep. I recall a moment at a fast food restaurant when I was blissfully enjoying a chicken fried biscuit with my son, now nearly 8 months old, when I overheard some young kids making hurtful remarks. My heart sank; it felt like a personal attack on my child.
My son was born with a rare eye condition known as ptosis, affecting one eye, and he has undergone surgery to help preserve his sight. His other eye has its own challenges, including webbing and a fistula. Both will require additional surgeries in the near future. As I prepare for the arrival of my second child this September, my protective instincts are heightened, and I often worry about how my son will navigate a world that can be cruel. The thought of potential bullying, social isolation, and self-doubt kept me awake many nights during his time in the NICU.
But my husband, my steadfast supporter, reminded me that succumbing to those hurtful words would mean letting negativity win. While I understood this logically, the emotional weight felt overwhelming. Then, a breakthrough occurred.
My son is truly remarkable. He brings joy wherever he goes, lighting up every room with his infectious smile, completely oblivious to his “differences.” If he isn’t disturbed by his appearance, why should I be? The children who made those insensitive comments were likely just acting out their own insecurities or simply being thoughtless. These are the realities our son will inevitably face throughout life. How my husband and I respond will influence his responses as he grows, and that is a lot of pressure.
Children often stare at him out of curiosity, and that’s natural. Recently, while shopping, an elderly man approached and asked, “What’s wrong with his eyes?” Instead of feeling upset, I seized the moment to advocate for my child. I responded, “There’s no need to feel sorry for him! He sees perfectly well and is the happiest baby you’ll ever meet.” At that moment, my son beamed a smile that could light up the world. The man was taken aback, but then he smiled back, and I realized how powerful our bond is.
I sometimes resent the idea that our child was given a deformity because it’s believed we could handle it. While I wouldn’t choose this journey for anyone, I have come to appreciate our resilience. I even wish I could revisit that fast food encounter to educate those boys about my son’s condition. I want to be an example, even if I sometimes feel exhausted and unprepared to answer questions or face the stares.
We chose to stop all genetic testing months ago after ruling out major syndromes; ultimately, our son is thriving, and that is what matters. I proudly embrace my identity as the mother of a preemie and a child with facial deformities. More importantly, I’m the mother of an intelligent, joyful, and spirited little boy. What could any mother want more than that? Absolutely nothing.
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Summary
In this article, a mother reflects on her journey as the parent of a child with an eye deformity, sharing her experiences with criticism and learning to embrace her son’s uniqueness. Through her story, she emphasizes the importance of resilience, love, and the joy her child brings to her life.