Dear Parent Who Just Received a Dwarfism Diagnosis,

Presumably, if you are reading this it is because your child has recently been diagnosed with Achondroplasia or another form of Dwarfism.

Before you read any further, I want you to take a deep breath and relax for a minute. Take a few minutes to read what I have to say.

Let me start by acknowledging that you are likely experiencing a wide range of emotions right now…shock, fear, and disappointment may be among them. You may be wondering what having a child with dwarfism means for you and your family, and what his or her life will be like. Nothing can truly prepare you for the reality that something is different about your child.

You might feel grief. Don’t be ashamed. You are grieving the loss of the child that you thought you were going to have. This is not what you had envisioned for your future. All of these feelings are normal. Please don’t feel any guilt or shame.  Nothing compares to the waves of overpowering emotions that envelop you as you deal with your child’s diagnosis.

You might be overwhelmed by the amount of information you’re trying to process. I know I was. Maybe you didn’t know anything about dwarfism before you received this news, and you’re now trying desperately to do research on the topic. I’ve been where you are, facing a scary unknown for my child.

Take another breath.

Here’s the thing…

No doctor can tell you what your life with your child will be like. Their expertise is limited to the medical field. A doctor sees the emergencies, the maintenance visits, and the family in crisis. They aren’t at the dance recitals, the class plays, and the picture-perfect beach days. And while your child might face some medical issues one day, they are so much more than what you are being told right now.

Your child is, first and foremost, your child.

They will have a personality all their own, a sense of humor, likes, and dislikes. They will drive you absolutely crazy one moment and fill you with pride and joy the next. They will push you far beyond the mom or dad you ever thought you could be.

I know that this diagnosis feels so big right now, but I promise you it won’t always be that way. It will soon become just one of the millions of things that make your child so special.

Before Mira was born, I really didn’t know much about dwarfism, but the truth is I really didn’t know much about her either. At the time of her diagnosis, she was just a blob on a screen. She was pages of long medical terms that were completely foreign to me. Her diagnosis represented uncertainty and fear.

I didn’t know that she would wake me up every morning by tapping her little finger on my shoulder. I didn’t know that she would memorize every word of The Lion King and then act it out on repeat. I didn’t know that she would give the best hugs and kisses. I didn’t know her favorite thing in the world would be dancing in the waves, just as I did when I was a little girl. I didn’t know that she would be a doting little sister — and the star in the room wherever we go.

I cannot tell you what challenges your child might have — just as I cannot tell you what challenges anybody’s child will have, “special needs” or not. One aspect of their life just happens to be that they were born with dwarfism. But this does not define who your child will be.

Exhale.

It's okay to feel everything you are feeling, and it’s okay for those feelings to change day by day.

We all dance through all of these waves. Everything will be alright. I promise.

From my heart to yours,

Carly