The Mighty Logo

When People Stared at My Son With Apert Syndrome at the Pool

I recently had the privilege of taking my boys on a road trip, along with my mom, to visit with my sister and her family.  She lives a couple of states away from us, so our visits are few and far between. It is always refreshing for my mom and I to spend quality time with her, as well as my boys getting to have fun with their cousins, because let’s face it… they are growing up, and before we know it, they will be grown and off to college.

Going to new places is not always easy for my family. My oldest son, who is now 14 years old, was born with a very rare craniofacial condition called Apert syndrome, which affects the skull bones by prematurely fusing. This leaves no opening, or “soft spot” for the brain to grow. His fingers and toes were also fused together. He has had 13 surgeries to rebuild and remodel his skull and midface bones, as well as separate his fingers and toes. Five of these major surgeries occurred before he was even a year old.  Needless to say, things have been complex for him, as well as our family.

My son is very introverted, and self-conscious about being “noticed.” The older he gets, the more resistant he becomes about going places.  I get it… at the tender age of 14, teenagers start seeking independence, and dragging them out of bed before 10 a.m. in the summer is torturous for them. This is also the age of trying to fit in and feel like you belong.

This was when my “new” worry began a couple years ago, but luckily we had two positive events that helped. First, we attended our very first family retreat with the Children’s Craniofacial Association. They host this event once a year so that other families affected by a craniofacial syndrome can meet, socialize, and connect on a level that allows a sense of freedom and belonging. Even though we may live states (and even countries) apart, we are not alone!

Second, we were able to launch a district-wide Choose Kind campaign the year he began middle school, to help raise awareness for Apert syndrome and craniofacial differences. This definitely eased his mind, and ours too. He came from a campus of two classes per grade level, in which everyone knew him, but he was about to enter into a middle school flooded with all the students from the other schools that didn’t know who he was. A video was made, and other students and staff participated to spread the word to choose to be kind. They also encouraged everyone to read the book “Wonder” by R.J. Palacio. If you haven’t read this book, I highly recommend it. Read it for yourself, or to your children or grandchildren — I hear they will be making a movie soon!

The Choose Kind campaign helped ease my son’s mind. In his words, “Now everyone knows, and I don’t have to worry about it anymore.”

Now, let me preface this next part by saying that we as a family have always gone places and done things like most families do: shop, eat out, go to baseball games, arcades, movies, etc. So when we were staying at my sister’s house, we decided to take the kids to their community recreational center that had indoor water slides, a lazy river and such. My boys have been there before with their cousins when they were much younger, and thoroughly enjoyed it. But the minute we arrived and got out of the car, my oldest son started saying to me, “I don’t want to swim, why are you making me swim?”

I have to be honest; I immediately began to feel irritated. It’s quite a struggle competing with technology time these days with a teenager. But what I wanted to ask him was – why was he being difficult? It’s not like we’ve never been swimming in public, or at water parks. I was perplexed, because two weeks prior he had overcome some fears and made the decision to go to church camp for the first time, away from home. He was surrounded by people from our church whom he felt safe with and trusted, along with his little brother, he chose to take the leap.

I stayed outwardly calm, and explained to him that we were here to spend time with our family and for him to enjoy this time with his cousins because we don’t get to see them very often. Besides, he loves to swim and ride on water slides. We went inside, paid for the entrance fee and walked to the pool area. My mom, sister and I were looking for a spot to sit so we could visit while the kids had fun.

We found some chairs and were about to sit down when my son said something to me.  It was kind of loud; everything was echoing, and he is very soft-spoken.  So I asked him to repeat what he said, and these words rang loud and clear despite the fact that I could still barely hear him. “A group of people have already stared at me.”

We had been there less than ten minutes, and those words in my ear punched me right in the gut. I was beginning to pick up his message. He was uncomfortable because we were in another state where he worried that people weren’t familiar with kids that look like him. I guess I was naive to think that we could be past this, and that everyone in the world would be able to look past his physical differences and move on.  But we’re not.  He’s not.  

We are so used to going places and doing things locally. I truly forget that being in a completely new environment, surrounded by people who may not have ever seen anyone like him before, can sometimes trigger his anxiety and feelings of fear. I had to pause for a moment and collect my thoughts on what to say. But the truth is, I don’t always know the right thing to say.

I don’t want to dismiss his feelings by minimizing the situation, but I do want to find just the right way to build his confidence. So I try my best to validate his feelings, yet still give him some truth, encouragement, and hopefully a sense of empowerment. My words to him were: “I am sorry that people have stared at you; that must make you feel uncomfortable. Remember, sometimes people look, but don’t stare, simply because they are curious. They may be wondering what happened, since your fingers and toes look different. But if they continue and it becomes an unkind stare, you can always smile at them or say hi.”

I knew with him being such an introvert, that might be a little unrealistic, but it was the most forgiving thing I could come up with… until my passion rose. My empathetic heart felt sad and a little angry, knowing my son has to deal with this on a daily basis. So I ended it with: “This is a moment where you can make a choice – to be brave, and hold your chin up high knowing that you are loved and that God made you just the way you are. Do the things that make you happy and don’t let fear control you.  Or – miss out on the fun and joyous things in life because you are too afraid.”

I am so proud to say that he chose to be brave, just like he has for the last 14 years.  And when I saw the smile on his face as he floated past us going down the lazy river, my heart could rest again.

Even though this is something he will have to conquer time after time for the rest of his life, I hope that now the seed is planted. The seed that will help him to grow stronger in who he is, and want to bloom even if there are weeds around him.

But this lesson was not just for my son. It was also for me.

Fear will not be our dictator.

Follow this journey at One Real Hero.

Conversations 1