themighty logo

What My Son's Doctors Didn't Tell Me About Fragile X Syndrome


Heather's son at the beach smiling
Heather’s son.

It’s been almost six months since we received the phone call that would change our lives forever. I will never forget that day. April 18, 2016, the day that we found out our son has Fragile X syndrome (FXS).  As I listened to his neurologist explain Fragile X, I couldn’t quite comprehend what I was hearing. How could my son have this? I had never even heard of it before, how could this run in my family? 

I went straight to the internet afterwards and started reading everything I could about Fragile X.  The literature was full of words like autism, seizures, disabilities, special needs, intellectual delay and mental retardation. At first, all of these words felt shocking and scary. How could this be? How could I not know? My son was delayed, but I never imagined he may have a permanent disability.   

The grief that comes with initially learning that your child has a disability is real. It is the realization that their life and yours isn’t going to be like what you had pictured. It is going to be different, and it is going to be a little harder. They are going to have to work a lot harder to do things that come easily for most kids. My son’s life will be filled with therapy sessions and interventions instead of the “normal” play dates and trips to the park. We will count every milestone and scrutinize our parenting even more. All of this can seem so overwhelming and depressing.  

However, what doctors and articles don’t tell you, is how much love you will have.

They don’t tell you how much pride you will feel when your son starts telling you that the grass is green and the sunshine is yellow.

How he will amaze you by proving the professionals wrong.

His disability doesn’t limit him; it just steers him down a different path.   

I can honestly say my son is one of the happiest kids I have ever met. He really is. His smile and laugh are contagious. He plays hard and laughs even harder. Trivial things don’t seem to bother him. He is too busy having fun and moving on to the next great thing. It turns out therapy sessions aren’t so bad either. His therapists really love him and for him, they are just his playmates. His friends. He gets to go on playdates with them three times a week.   

The most important point in all of this is that he is happy. At the end of the day, that is what I want most for my children, for them to find happiness. 

We want to hear your story. Become a Mighty contributor here.


Find this story helpful? Share it with someone you care about.