The 2-Word Response I Get When People Find Out My Child Is Terminally Ill

When people find out I am a parent of a terminally ill child, I typically get two different responses.

The most common response I get is the one I dislike the most. It’s the “I’m sorry.” Simply put, it’s just sympathy mixed with the pity card. These people typically do not ask any other questions and want to end the conversation as quickly as possible. It is almost as if they shut down after they hear the word “terminal.”

I’m not too fond of this for a few different reasons, but mainly, the last thing I want is your pity. Honestly, since his diagnosis four years ago, my son has taught our family more than we will ever learn in a lifetime.

What I want is for you to show an interest in my child.

The second type of person I come by is rare, but I personally love them. They are the ones who ask questions.

What disease does he have? How did you find out? Is it genetic? How is he doing now?

I love these type of people because they genuinely want to know more. They allow me to share his story, advocate for him, and spread awareness about Sanfilippo syndrome all at the same time. It means a lot.

I know some people may think that it may be “annoying” to me or others in the same or similar situation, or that it may be too personal to ask these questions — but let me tell you, it’s not. Do you get annoyed when someone asks you questions about your neurotypical child?

All we want is for others to treat our children as people too. We love it when you want to know more about them, such as their likes, dislikes, and how their day is going.

So the next time you cross paths with a parent of a child with a disability, or a parent of a terminally ill child, please ask about their child. If their child is present, please acknowledge them, even if it’s just a smile with eye contact.

Trust me, something that small could change our entire day.