Four years ago, my life took a wonderfully unexpected turn. Our son, just a few days old, was home for the first time, and that night felt like an eternity. He cried non-stop, and I found myself questioning everything. Is this normal? What have we gotten ourselves into? Maybe parenthood isn’t for me after all!
As it turned out, he was suffering from double ear infections, which explained the endless wails. We were both shocked and relieved. But how could such a tiny newborn have ear infections? And why was he swimming in newborn clothes at just five weeks old? The ear infections didn’t stop, and soon colic was added to the mix. With only two hours of sleep a night, I became convinced that restful nights were a thing of the past.
That’s when we decided to consult a doctor. Our son was tiny, with a relatively large head and the brightest blue eyes. He had a smile that could light up any room, but he was also diagnosed with achondroplasia, the most common form of dwarfism. Suddenly, all those joyful visions we had during pregnancy were overshadowed by fears of medical complications and societal challenges. I recalled all the inappropriate jokes I had heard about little people. My baby was not a punchline; he was our cherished son. My husband and I experienced a whirlwind of emotions—sadness, anger, denial, and isolation.
Neither of us knew much about dwarfism, and it wasn’t in our family. Yet, astonishingly, over 80% of little people are born to average-height parents. Achondroplasia occurs in about 1 in 40,000 births, which is a rare genetic lottery that we hadn’t expected to win.
When a doctor mentioned a potential cure, something shifted in me. I realized that I wouldn’t change a single thing about my son. The idea of altering him felt as strange as changing his eye color. Our little boy is extraordinary just as he is—whether he grows to be six feet tall or four feet tall, it doesn’t matter. The more we learn about achondroplasia, the more our dreams for his future, filled with friends, love, and career aspirations, come back into focus. He may always be small, but that’s merely a detail.
With dwarfism comes possible complications. Before he turned three, he underwent numerous sleep studies, MRIs, ear-tube surgery, and tonsil and adenoid surgery, along with countless visits to specialists. He’s a trooper, and I quickly learned to toughen up and trust the medical advice we received.
Now, at four years old, he doesn’t fully grasp that he’s different. We talk about it openly, explaining that being little is just like having blond hair—everyone is unique in their own way. He loves watching shows featuring little people, and we often remind him he’s our “little big” boy. He’s growing up and doing all the big kid things, and I assure you, the only thing small about him is his stature!
When he started preschool at three, we hoped it would help build his confidence, and it did! He made friends who notice his size but see him primarily as a classmate. We appreciate that our friends ask about his condition and lend us an understanding ear during tough times while also treating him as they do every other child. It’s as if they forget he’s little—just like me.
October is Dwarfism Awareness Month, and I’m always eager to share information about achondroplasia and our son. Sadly, many people still don’t understand this condition, leading to the use of derogatory terms and hurtful jokes. It breaks my heart to think someone might take his picture just because he’s small. Thankfully, these hurtful individuals are a minority, and my son is not a victim.
While I don’t expect everyone to treat him exactly like everyone else, he’s simply small. He enjoys the same activities as his peers, and when he grows up, he will have dreams and aspirations just like them. When I discuss his height with him, he proudly calls himself “little big.” He’s beginning to understand that he’s little but can still accomplish big things. And I couldn’t be prouder.
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In summary, our son’s dwarfism is just a part of who he is. Embracing this aspect of his life has brought us so much joy, and we look forward to all that the future holds for our “little big” guy.