Four years ago, an unexpected journey began for my family. Our son, Lucas, was just a few days old when we brought him home, and that first night was the longest of our lives. He cried nonstop, leaving me in a state of worry. Was this typical for newborns? Had we made a mistake in wanting children? It turned out he had double ear infections, leading to our mix of shock and relief. But at just 5 weeks old, why was he swimming in newborn clothes?
As his ear infections persisted, a diagnosis of colic followed. Sleep became a scarce commodity, and I was convinced restful nights were a thing of the past. It was time for a doctor’s visit. Lucas was exceptionally small for his age, yet his head was notably large. He had the brightest blue eyes and a smile that could light up any room. However, he was also diagnosed with achondroplasia, the most common form of dwarfism. This news replaced our hopeful visions of parenthood with fears about medical challenges and social acceptance. I could hear the echoes of “midget” jokes from my past, but my baby was not a joke—he was a precious little boy.
My husband, Mark, and I experienced a whirlwind of emotions—sadness, anger, self-pity, denial, and ultimately, acceptance. Neither of us had prior knowledge about dwarfism; it wasn’t a condition present in our families, and I had never known a little person before. Surprisingly, over 80% of individuals with dwarfism are born to average-height parents, and the occurrence of achondroplasia is roughly 1 in 40,000 births. We soon realized we had encountered a rare genetic situation.
The pivotal moment came when a doctor mentioned the possibility of a cure. It was then I recognized that I was not only accepting of Lucas’s condition but that he was perfect just as he is. The thought of altering him felt wrong, akin to changing his eye color. Our son is remarkable exactly how he is—regardless of height. As we delved deeper into understanding achondroplasia, our aspirations for his future—friendships, love, and a fulfilling career—were reignited. He may always be small, but that was just one aspect of his being.
However, this diagnosis does come with potential complications. Before Lucas turned three, he underwent multiple sleep studies, MRIs, ear-tube surgery, and tonsil and adenoid procedures. The stress during wellness visits was amplified beyond what I ever imagined. I had to become resilient, trust the medical professionals, and inquire extensively about his health.
Now at four years old, Lucas is blissfully unaware of his differences. We frequently discuss his stature, explaining that being little is just like having blond hair—something that doesn’t limit what he can achieve. He enjoys watching shows featuring little people and proudly identifies as “little big,” emphasizing that he can do all the things his peers do. His personality is larger than life!
When he started preschool at age three, we hoped it would enhance his confidence. It did! Lucas has formed friendships, with some classmates curious about his height while others see him simply as their friend. We appreciate how our friends engage with us about his condition while treating his size as a non-issue.
October marks Dwarfism Awareness Month, a time I actively seek opportunities to educate others about Lucas and achondroplasia. Many people remain unaware of this condition, and ignorance can lead to hurtful comments and behavior. It saddens me to think of individuals who might take pictures of him simply because of his size. Fortunately, most people are kind-hearted and embrace differences rather than mock them. My son is no victim; he is a vibrant individual with dreams just like any other child.
In discussions about his stature, Lucas often states he is “little big.” He’s starting to grasp that while he may be smaller, he can engage in all the activities his peers enjoy, and he takes pride in that. As do I.
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In summary, Lucas’s journey with dwarfism has shaped our family’s perspective, making us embrace his uniqueness while fostering understanding in others. He is not defined by his size, and we look forward to all the adventures ahead.
Keyphrase: Dwarfism Awareness
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