Where is your heart?

Something that I find incredibly difficult when it comes to Beckwith-Wiedemann Syndrome is figuring out other peoples reaction to Owen’s physical differences. You might wonder why I even care what others are thinking. Especially because I have always been someone that could care less what other people think of me. That all goes out the window when those opinions are directed at your child. I cant help but instantly feel rage creep up from my stomach when I see someone judge my son. It is one of the hardest things thus far that I have been faced with, while at the same time is my biggest motivation.

It is very difficult to figure out whether someone is staring at Owen because they are disgusted or because they are curious. I dont necessarily mind the stares if the intention behind them is innocent. You may think I am crazy for saying people could think nasty thoughts about a 2 year old, but I promise you they can. I have had plenty of nasty stares and ignorant comments directed towards him, which I wont even give credit to by repeating. 

When your motivation humbles you

There are many times that I get so caught up with everyday life and the stress it brings, that I sometimes forget what or who it is that motivates me. Yet there always seem to be moments that humble me and make me remember why I started this journey in the first place. I remembered my motivation really quickly while we were on vacation last week. 

My family and I went out to eat at an outdoor restaurant near the beach in South Carolina. The place was family friendly so it was perfect for us. Many of my siblings and I had our children with us and they were able to run around and play without judgmental looks - well sort of. 

Owen was being his usual personable self, going up to people, saying hi, and flashing his big smile at them (one of my favorite things about him). From afar, I saw him attempting to talk to a couple at a table. I then noticed the man he had gone up to start to mimic his tongue. I have seen this before and usually it is innocent. Most people think Owen is purposely sticking his tongue out and trying to play a game with them. This time, however, the man wasn’t sticking his tongue out. He was trying his hardest to make his tongue look like Owen’s looked. That was when I got up.

Confirming what I already knew

As I got closer, it seemed as though my fear was confirmed. The man was making fun of Owen. If you know anything about me you know that I go for the jugular when it comes to my children. But in that moment, I had a decision to make. I could freak out and cause a scene and waste my breath on clearly an ignorant person, or I could take Owen by the hand and take him away from the situation. I chose to not waste my breath. Not usually the path I take, but nonetheless it was the better choice in this situation.

In that moment I realized that situations like that are exactly why I am doing what I am doing. Unfortunately people are ignorant. Some are ignorant because they don’t know and some are ignorant because that’s just who they are. It would be naive of me to think that everyone who looks at Owen can see beyond his physical differences. I know now that its not the case. So what I am choosing to do is use those shitty moments as fuel. Fuel that will continue to ignite and stoke a fire larger than any ever seen. 

You can take control with your reaction

You see, you have a choice to make in every situation and you have the ability to dictate the outcome based on your response. In that moment, I wanted nothing more then to humiliate the grown man who was shamefully making fun of my two year old son, but what would that have done? My silence and aggressive stare towards him spoke volumes. He heard my voice without me having to speak a word. My motivation was instantly propelled forward.

Now, I can’t promise that will be my go to reaction. Actually, I can promise that it most likely won’t be. I can also promise that no matter what ignorance Owen experiences, I will be there to guide him through it and to hopefully change peoples perspective. For their sake I hope their ignorance catches me on a good day !

Live Large and Stay RARE.
-tt