Updated: April 24, 2020 | Originally Published: Oct. 23, 2015
Four years ago, an incredible journey began for our family. Just days after our son’s birth, we found ourselves at home, facing what felt like the longest night of our lives. He cried non-stop, leaving me to wonder, “Is this normal? What have we gotten ourselves into?” I even questioned if I truly wanted to be a parent.
The cries turned out to be the result of double ear infections, which shocked and relieved us. How could a newborn have ear infections? Why was our son swimming in newborn clothes at just 5 weeks old? The ear infections persisted, and colic was diagnosed. Sleep became a distant memory as we struggled with just two hours of fragmented rest each night. It was time to consult the doctor.
Our son was exceptionally small for his age, with a disproportionately large head. He had the brightest blue eyes and a smile that made every day worthwhile. Eventually, specialists informed us that he had achondroplasia, the most prevalent form of dwarfism. The diagnosis shifted our focus from joyful anticipation to worries about potential medical issues and social challenges. My mind echoed with all the “midget” jokes I had heard over the years. But my baby was not a joke; he was our sweet little boy. My husband and I experienced a whirlwind of emotions—sadness, anger, denial, and loneliness.
Dwarfism was foreign to us; it didn’t run in our families, and I had never met anyone with this condition. Yet, more than 80% of little people are born to average-height parents, and achondroplasia occurs in roughly 1 in 40,000 births. We were left wondering if we had hit the genetic jackpot.
One pivotal moment came when a doctor hinted at potential cures for dwarfism. It was then that I realized I was perfectly fine with my son’s condition. In fact, I wouldn’t change a thing about him. The idea of a cure felt unsettling—like someone suggesting we alter our baby’s eye color. Our child is amazing just as he is, whether he grows to be 6 feet tall or remains at 4 feet. Our dreams for him—friends, love, marriage, and a career—began to return as we learned more about achondroplasia. His size is just a small part of who he is.
However, this diagnosis does come with its share of possible complications. Before he turned 3, our little one underwent several sleep studies, MRIs, ear-tube surgery, and tonsillectomy. I thought vaccines would be the toughest hurdle! It’s a daunting experience, made more difficult by the stress and uncertainty. I had to become tougher, trust the medical professionals, and ask countless questions.
Now, at age 4, he is blissfully unaware of his differences. We often discuss his stature in a positive light. I explain that he was born to be little, just like others are born with blond hair. People with different hair colors can do the same things—variety makes the world interesting! He enjoys watching shows featuring little people and refers to himself as “little big”—he is growing up and can do all the things big boys do, despite his size. And believe me, his personality is anything but small!
When he started preschool at 3, we hoped it would help build his confidence. It did! He made many friends, some of whom noticed his size while others didn’t even think twice. To them, he is just their classmate. We appreciate how our friends ask questions about his condition and lend a sympathetic ear during tough times, while also treating his size as a non-issue. It’s as if they, like me, often forget he’s little.
As October marks Dwarfism Awareness Month, I constantly seek ways to educate others about achondroplasia. Many still misunderstand the condition, often resorting to derogatory terms or making cruel jokes. It saddens me to think of people taking pictures of my son simply because he’s small. Thankfully, such incidents are rare; perhaps those who mock others do so because they feel inadequate themselves. Regardless, my son isn’t the problem—he is no victim.
I understand that not everyone will treat my son like everyone else. The reality is that he is different, but that’s just one aspect of him. He enjoys the same activities as his preschool peers and will have dreams for his future just like them. When I discuss his height, he proudly states that he is “little big.” He’s beginning to grasp that while he may be little, he can still achieve big things—and I couldn’t be prouder.
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Summary:
Parenting a child with dwarfism comes with unique challenges and experiences, but love and acceptance are paramount. Our son, diagnosed with achondroplasia, is simply our “little big” boy, full of dreams and potential. As we navigate the complexities of his condition, we remain committed to educating others and fostering understanding.
Keyphrase: Dwarfism Awareness
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