New Places, New Faces
“A group of people have already stared at me…” We had been there less than ten minutes, and these words that my oldest son spoke into my ear punched me right in the gut.
A couple weeks ago, I 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, as well as his fingers and toes being fused together. He has had 13 surgeries to rebuild and remodel his skull and midface bones, as well as his fingers and toes separated with skin graphs. 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 is very self conscious of 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 where my “new” worry began a couple years ago, but luckily we had two positive events that helped: 1. We attended our very first family retreat with the Children’s Craniofacial Association. They host this event once a year in a different state so that other families affected with a craniofacial syndrome can meet, socialize, and connect on a level that allows a sense of freedom and belonging. Just knowing that even though we all may live states (and even countries) away we are not alone! 2. 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 middle school that flooded with all the students from the other intermediate school that didn’t know who he was. A video was made, and other students and staff participated to help encourage everyone to read the book “Wonder” by R.J. Palacio, in addition to helping raise awareness and to spread the word to choose to be kind. (If you haven’t read this book, I highly recommend it. Read it for yourself, to your children or grandchildren – I hear they will be making a movie about it soon)
In his words he described it like this: “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. We made that decision for him and for our family that we would not be secluded to our house and that our children were going to have great life experiences. I mean, why wouldn’t we? (You also need to know that he has always been a strong spirited child, which has its pros and cons). But 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 that he was trying to get out of doing this. This seems to be his theme lately. 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 even to water parks for that matter. I was perplexed actually, 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. Although he was surrounded by people from our church that he felt safe with and trusted, along with his little brother, he chose to take the leap. This would have been my knee jerk reaction, but instead, I 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 with this being indoors and everything was echoing, not to mention that 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 that he spoke into my ear punched me right in the gut. So there it is. We are back to this. I was beginning to pick up his message. He was uncomfortable because we were in another state where, in his mind, 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 the “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, and the fact that these people may not have ever seen anyone like him before, can sometimes trigger his anxiety and feelings of fear. I really had to pause for a moment, and collect my thoughts on what to say. But the truth is, I don’t always know what the right thing to say is. I don’t want to dismiss his feelings by saying something to minimize the situation, but at the same time I don’t want to feed into his fear with my maternal bleeding heart. So, I try my best to validate his feelings, yet still give him some truth, encouragement, and hopefully a slight 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, then you can always smile at them or say hi.” I knew with him being such an introvert, this was a little unrealistic, but it was the most forgiving thing I could come up with…until my passion rose. My empathetic heart was wrenching, almost a little angry, simply for the fact that my son has to feel this way and 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, hold your chin up high knowing that you are loved and that God made you and created you just the way you are. Do the things that make you happy and not let fear control you. Or – miss out on 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.
And even though this will be something he will have to conquer, time after time for the rest of his life, I hope now that the seed is planted. The seed that will help him to grow stronger in who he is, and to want to bloom even if there are weeds around him.
Fear will not be our dictator.
This lesson was not just for my son. It was also for me.
God Bless.
