My Son Has Dwarfism, But To Us He's Simply 'Little Big'

Four years ago, my unexpectedly awesome adventure began. Our son was only a few days old, and it was our first night home after his birth. It was the longest night of my life. Our precious little bundle of joy screamed for the entire night. Is this normal?! I worried. What had we gotten into? Maybe I didn’t want kids after all!

It turned out that he had double ear infections. My husband and I were shocked and relieved at the same time. There was a reason he screamed for hours on end. But how could our newborn have ear infections so young? Why was he swimming in newborn-sized clothes at 5 weeks old? The ear infections continued. Colic was diagnosed. We were getting concerned, and life is not easy on two hours of broken-up sleep a night. At that point, I was certain that I’d never sleep an entire night again. It was time to talk to the doctor.

Our son was off-the-charts small, but his head was large. He had the biggest brightest blue eyes you’ve ever seen, and a smile that kept me going every day. He was also a little person. Specialists diagnosed him with achondroplasia. It’s a long word that refers to the most common form of dwarfism. With this diagnosis, fears of medical complications and social issues replaced all those beautiful visions that had flooded our minds over the previous 9 months. My ears rang with all the “midget” jokes I had heard over the years. My baby was not a joke. He was a sweet baby boy. My husband and I went through every feeling possible—sadness, anger, self-pity, denial, frustration and loneliness.

We didn’t know anything about dwarfism. It’s not in our family, and I’d never met a little person in my life. But, more than 80 percent of little people are born to average height parents. Achondroplasia only occurs in 1 in 40,000 births. That’s a 0.000025 percent chance. We wondered if we had won the genetic lottery, and it really didn’t take long to realize that was quite true.

The day one of our doctors mentioned that a cure could be in the works was the day I realized that I was not only OK with my son’s condition, but that he is perfect and I wouldn’t change him one bit. The thought of a cure is actually upsetting. Imagine if a doctor told you that you could have your baby’s eye color changed—it’s like that. Our little boy is amazing just the way he is: 6-feet tall or 4-feet tall. What does it matter? As we learn more about achondroplasia, our dreams for him of friends, love, marriage and a career return. He will always be small, but that’s all.

However, as is the case with a lot of conditions, this diagnosis comes with a number of possible complications. Before he was 3 years old, our baby had numerous sleep studies, MRIs, ear-tube surgery, tonsil and adenoid surgery and countless specialist visits (and I thought I would have trouble with the vaccines!). He’s a champ. Take that wellness visit and multiply the stress and fear by 100. I had to toughen up, trust the doctors and ask an insane amount of questions.

Today he’s 4 years old. He doesn’t quite know that he’s different. We talk about it a lot. I tell him that he was born to be little just like some people are born with blond hair. We talk about how people with blond hair can do the same things as people with brown hair. The world would be really boring if we were all the same. He likes to watch the little people shows on television. We talk about how he is “little big”—he’s growing up! He can do big boy things even though he is small in size. And trust me, his size is the only thing that is small about him!

He started preschool when he turned 3. We thought it would be a great opportunity for him to gain confidence. He proved us right! He has so many friends. Some asked about his size. Some don’t even notice. They see him as their classmate and friend. We love how our friends ask questions about his condition and lend us a sympathetic ear during tough times. We also love how they don’t make his size a concern. It’s as if, like me, they forget he is little.

October is Dwarfism Awareness Month. I’m always looking for ways to share information about my son and achondroplasia; there are still so many people who don’t understand this condition. Both kids and adults are guilty of using derogatory terms (“midget” ranks number-one), taking pictures, teasing outwardly in public and even posting things on the Internet. Little people are still the butt of a lot of cruel jokes. It’s often due to the fact that people don’t know anything about the condition, and the unknown is easy to laugh about. It saddens and frustrates me to think how this can go on. My heart breaks at the thought of someone taking my son’s picture just because he is small. Luckily, these people are the minority—perhaps the only way they can feel good about themselves is to make fun of others. But no matter the reason, my son isn’t the issue. He’s not a victim.

I know I can’t expect people to treat my son just like everyone else. The reality is what it is—he’s different. But that’s it. He’s just small. He likes the same things his preschool friends do, and when he grows up he will have hopes and dreams for his future just like his peers.

When I talk to my son about his stature, he simply states that he is “little big.” He’s starting to understand that he is little, but that he can do big boy things. And he’s proud of it. And I am too.