Dear Parents Expecting a Child With Achondroplasia
To parents expecting a child with achondroplasia dwarfism,
It is OK to be afraid of the unknown; that is what makes us human. My hope is to illuminate the path of the future enough that you will feel comfortable to take a step forward. There are so many negative or fear-inducing articles online pertaining to dwarfism, so I would like to add my opposing perspective.
Hello, my name is Sarah and I am a 21-year-old college senior. I study theatre, specifically directing, and I am incredibly passionate about it. I love spending time with my friends. I have a strong and personal connection with my faith. I drive a car. My favorite food is steamed dumplings. I love to travel and to go to museums. In my music collection you will find quite a bit of Queen, Phil Collins, and Beyoncé. The Pacific Northwest U.S. is my favorite place. I am an activist. I also have achondroplasia. It is just another descriptor in a long list of things that make up who I am. Of course it plays a part in my life, but so does everything else I stated in this paragraph.
Now that I have given a brief introduction into who I am, I would like to tell you that your child can have a wonderful life. They will be a whole person with a million different qualities. Their life will be full. Above all, your child will never “suffer from” dwarfism.
Medical language and literature can get overwhelming with achondroplasia. There is a medical aspect to it, but it is not generally as all-consuming as some think. Your child could need some surgeries, but so do many other children all around the world for various reasons. There may be physical barriers like a high sink or a tall counter, but this is where a stool comes in handy. You’ll be amazed when your child find their own way around barriers.
There are also the social aspects of dwarfism that many people have questions about. Just like any physical difference, some people may have preconceived ideas. However this is where education comes in, and this is why I am writing. There are many other activists with dwarfism that are educating the world right now about the countless similarities and very few differences it entails. They are building a better world and paving a road for your child.
There are amazing organizations like Little People of America with national conferences once every year and regional conferences biannually. This is a great resource to get to know other people with dwarfism and get connected to the right doctors in your area. LPA is where my parents met. Both my mom and dad have achondroplasia. This is why I also have it, and so does my younger brother. I would not exist without this organization. There are also places like The Painted Turtle, a summer camp in California. Every year there is a week for kids with dwarfism to go and all be together in a fun, encouraging, happy and accessible environment. I was a camper in my younger years and I only have wonderful things to say about this place.
Your child with dwarfism can live an awesome life. I hope that this letter has brought you comfort in knowing that. Your child will be unique, but not because of dwarfism, because they are yours. They can love music or playing outside. They can become a doctor, an engineer or an author. They can fall in love. Do not worry about what their life will be because nobody can plan that. Just be ready for a great adventure.