It’s days like today that remind me of the importance of spreading awareness about not only Apert Syndrome, but any physical differences. We have committed ourselves to educating others about looking past physical appearances and seeing the true beauty of God’s miracles. When we talk about “Apert Awareness” we are not just saying that we want people to know our daughter has Apert Syndrome. We want to stimulate conversations about differences and how we treat others. I’ve heard from so many people about conversations they have had with their children since learning about Callie Anne. That is exactly what we hope is happening at dinner tables and in neighborhood parks all over. Children will treat others the way they see their parents treat others. We have an opportunity to raise a generation of loving and accepting children. Our hope is that we can encourage others to teach their children about valuing characteristics such as kindness and acceptance instead of just physical appearance.
I believe that my little girl is gorgeous. Not gorgeous “for a kid with Apert Syndrome,” but just gorgeous. She has eyes that are truly amazing. Her smile will light up a room. I love to dress her up in cute clothes and take pictures of her. I could literally just stare at her all day and night. She’s more than I could have imagined. But….
Not a single day goes by that I don’t notice stares and whispers when I take Callie Anne out. It doesn’t matter where we go. It happens everywhere. Sometimes it is simply a lingering look, which I’ve learned to accept as curiosity and not judgment. But, then there are days like today when the reactions are much more hurtful. As David, CA, and I were leaving Sam’s today, a mother and about 5 little boys were walking out next to us. One of the boys noticed Callie Anne and yelled to the others to look. They didn’t speak English, but the pointing and laughing surpassed the language barrier. The entire group of children gawked, pointed, and laughed at my baby girl. The mother was preoccupied with the child in the cart and I don’t think she knew what they were laughing about. David didn’t notice any of it, but my eyes are always looking around in what I can only describe as “defense mode.” I notice every reaction. I cried all the way home and well into the next hour or so. Each time this happens, I come home and recite in my mind how I will handle it “next time.” But, when “next time” comes around, I freeze. I freeze and then break down. I truly believe that this will get better. I’ll work out a way to handle these situations, but we are only 7 months into this and I’m not there yet.
People always tell me that it doesn’t matter what other people think. Callie Anne is perfect and beautiful. I believe that with all of my heart. She is the most perfect and precious thing I’ve ever laid eyes on and in my heart, I know that others’ opinions of her are not important. BUT….if you don’t have to face what I have to face every time I leave the house with my child, you will never understand. CA is only 7 months old and isn’t aware of how people judge her. However, I am all too aware and it hurts. It just does. My mind immediately fast forwards a year or so when she DOES notice. When she DOES see the stares and whispers. We will absolutely raise her to be a strong, self-confident girl. She will be her own advocate and will stand up for herself. But, she will still be a little girl. She will be a little girl in a world who values typical beauty. There is no way to protect her from it all and that breaks my heart every single day. I’m a self-aware and self-confident woman and it hurts MY feelings. What about the feelings of a precious little girl with no control over her differences? She had no say in how she was born. She isn’t making the decisions to have these major surgeries that will change her appearance forever. She’s just a sweet baby girl for whom my heart hurts. It is what it is and we will do everything in our power to make it as easy on her as possible.
I know in my heart that this little girl is meant for HUGE things! She will by an amazing advocate for Apert Syndrome. Callie Anne has already proven, in her short 7 months, that she is a strong willed, independent chick! There will be no stopping her! Our job, as her parents, is to help give her the best opportunities we can. We will work to open the eyes and hearts of everyone in her little world in an effort to make her childhood a little less challenging and give her the strength and support she needs to grow into the woman we know she will be. That’s why we do what we do.
I found this quote today, before the “incident” and I love it. Beauty comes in so many forms. My baby girl is beautiful in ALL of them!