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We all say that this guy is good looking or this child is so cute. These comments make a person feel good about their selves and they long to hear it. But there are times when people say things that are really degrading to a person. I found a great podcast called “Advocate Like a Mother”.  The host is a mom who has a boy with Down Syndrome and she interviews moms who have children with disabilities. This episode that I heard was with a mom who has a daughter who has facial distortions and many other illnesses. She needs nurses around the clock.

Overcoming Fears

When the parents take their daughter out, they get people looking at her and say how could they keep her. She should be dead and among other things.  At first, the mom did not know what to do because it was all new to her. So, one day she had enough and it was time to start living and start advocating for her daughter. Slowly she started to do interviews and is starting to give talks. 

Doing the Right Thing

In South Carolina where they live, they had a bill coming up for a vote to decrease funding for children who need nurses around the clock. A group asked this mom to talk to the state government about her daughter. She was scared but she said yes. That started a community following her on social media. 

Her social media has grown to a point where she is getting requests for different equipment for different families around the world and her followers are giving money for the equipment. She sends them to the families for free. So, she is doing a lot of good for people, but she is also getting a lot of hate mail.


The mother is using Twitter for her main platform to get her message out. She noticed when she tried to report the bad comments that she was getting, Twitter didn’t understand what her platform was. There was no platform for parents with disabled children so when she tried to report something, she was asked the same thing over and over. She got Twitter to add this group to their app, and now she is trying to get the other social media outlets to the same. It will happen sometimes she said. 

My Own Facial Disortions

I thought about this for a few days now and have a few thoughts that I would like to share with you. I make facial distortions especially when I am stressed or uneasy. Last Saturday night I went to a festival and my body got tight so my mouth started to distort. I don’t know why. So, I get looks and rude comments too. It hurts bad, but you can hide in your home or say I have one life to live and I will do my best.

Look Beyond the Body

As I think of it, this mom is like my mom. They were scared what they needed to do, but when they got the momentum going, nothing can stop them. It is the same with everything – when you find your passion in something that you believe, you cannot be stopped. I have to be passionate in something that I am called for otherwise I cannot go forward in it. 

Life is a bowl of cherries but sometimes it is so cruel. We have to educate society about our lives with disabilities. I am not saying that people will change their attitudes to us. Facial distortions can happen to anyone so people have to look beyond the looks into the person’s heart. The people with facial distortions are human beings who deserve the respect and the love that everyone wants.  Do you think that we should look beyond the physical body and really look at the person’s heart? 

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