By Kimberly D'Angelo, as told to Jennifer Clopton
When our daughter Mia was diagnosed with dwarfism at 6 months old, we were flooded with feelings.
At first it was relief. We had seen countless doctors and specialists searching for a diagnosis, so it was reassuring to know our daughter wasn’t suffering from a life-threatening condition (her condition, achondroplasia, is usually identified in utero or immediately at birth, but not in Mia’s case).
Then came shock. Dwarfism doesn’t run in our family, so we had never entertained the possibility that one of our children would be a little person.
After that, my predominant and persistent feeling was fear – mostly of the unknown.
We decided that the best way to combat fear is with education, so we set about trying to learn as much as we could about Mia’s diagnosis. It wasn’t easy. Though achondroplasia is the most common form of dwarfism, there wasn’t a lot of positive information out there about what life might be like for her. But there was a lot of cruelty. We were shocked at how many people seem to think it’s okay to make fun of dwarfism. We realized that the ignorance of others, fueled largely by a long history of negative portrayal of dwarfism in movies and TV, would likely be the few things in life that might hold her back, and our family committed ourselves to fighting that ignorance with advocacy and education.
I think that attitude has helped Mia thrive. The fact that she’s our third child has helped too. She doesn’t live her life in fear because we don’t coddle her. She has two older brothers who play sports and love school – and whatever they do, she generally does, too.
When she wanted to bike with other kids around the neighborhood, we got her a custom made bicycle. When she asked to sail, snorkel, surf and play tennis – we said yes. That’s what led to ice skating too. My oldest son is a hockey player so I’ve been carrying Mia to the ice rink for his practices and games ever since she was born. My son had started skating at the age of 4, so when let Mia turned 4, we let her try it too. She picked it up quickly and soon fell in love with the sport.
After spending most of her life frustrated that her friends with longer legs could run faster than her, it was magical to see her find a way not only to keep up - but to really fly. Ice skating allows her to be fast and free and not fall behind others. So it was no surprise when, around the age of 7, she decided she wanted to try figure skating.
She skated individually for several years and was doing well, and then one day she saw the synchronized skate team heading to their first practice of the season. She decided she wanted to give it a try.
I knew it would be a challenge for her. Because of her dwarfism, Mia’s arms and legs are shorter than the average 13-year-olds. And just three years before, she had undergone an incredibly difficult and painful surgery to correct her severe bow-leggedness (a common side effect of her condition). It had taken several months for her to learn to walk again.
With that experience being not so long ago (in my mind, at least), , I worried that she would struggle to keep up with other girls on a synchronized skating team – much less be able to perform the precise footwork and complicated moves in unison with them as the sport requires.
As I feared, after about 20 minutes that first day of trying to skate with the team, Mia exited the ice, red-faced and with tears welling up in her eyes. I met her with a smile. “That’s ok,” I told her. “You gave it your best shot. It’s always good to try new things.” My words of encouragement didn’t give her much comfort. She was clearly frustrated and disappointed, so we packed up without another word and headed home. But the next week, when Mia finished her private lesson and saw the skate teams warming up, she looked at me and said, “Mom, I think I’m going to try again.”
Two years later, she is still a member of this group and has competed with them several times – including twice in Lake Placid. Her teammates are amazing. The girls sincerely support and love each other and they are all so talented. This year their club came in second place out of sixteen clubs from all along the East Coast and when four trophies were handed out at our club’s end of the year award ceremony, the one for outstanding sportsmanship and hard work went to Mia.
As I stood there watching her accept her trophy and flowers that day and saw a big smile spread across her face as she soaked up the applause, I realized that fear I worried about when she was a baby is rarely there anymore. My husband and I set out thinking we were going to have to try and change the world to make it kinder to her. But we’ve learned through the years that she is perfectly capable of doing that herself. My daughter beautifully and gracefully advocates and educates about dwarfism every day - while also refusing to let it define her.
So to other parents out there who have children with special needs, I say this: If you are feeling fear of the unknown, know that is to be expected. Also know that you have a choice in how you face that fear. I recommend letting your child lead you. When they ask if they can try something – say yes. Don’t put limits on them or worry about what they can’t do. Put on the ice skates. Give them a guitar. Get them a bicycle. Let them snorkel in the ocean. Instill them with a spirit of courage, resilience and problem solving, give them opportunities and see what they can do. I’m guessing that like my daughter, they will surprise and inspire you…and the rest of the world.
Kimberly D’Angelo is a mother of three who lives in Tewksbury Township, NJ. If you want to learn more about dwarfism, she recommends visiting the Little People of America website. Kimberly says Mia, who is now 14, is a member of the group in her local area and it has proven to be a source of great support and education for the entire family.