I see a beautiful curly hair superhero that has had to fight from the beginning. I see a spirit of tenacity that pushes through any no that is said her way. I see a joy that is uncontainable. I see scars that each tell a beautiful story of healing. Some see my version, others ask questions before seeing this, some stare and never see what I see, and some are just plain mean and never care to learn anymore. This is probably one of the hardest aspects of Sloane diagnosis for me to fight through; looking different. Of course it’s only physical and so many people have said, “oh who cares, she’s healthy, or its doesn’t matter what you look like”. Yes of course I know all of that, but I also know society tends to judges first and asks questions second. As her mother I want to protect her from the ones that don’t even allow her words to be heard and write her off solely by how she looks. When I see this happen it maddens me that we can continue to live in a world that is so consumed with outward appearances vs the characteristics that define us. I am guilty of it. Of course I care what I look like, I may not be a fashion blogger, but I can get caught up in what society sees and work harder on out my outward appearance rather than my heart. I want and need to be better especially since I’ve seen a whole new aspect of this in our own lives.
If you haven’t seen the movie Wonder, you have to see it! It’s such a wonderful reflection of our lives and embracing looking different. Quick summary: the older sister is extremely overprotective of Augie who is the little boy with Treacher Collins syndrome. The dad is the rock and the mom is the heart of family and stands firm in advocating for her son while he encounters new challenges in middle school. While Sloane does not have the same genetic disorder that Augie had she has a physical disability. She is missing cranial nerve #7 so only half of her face works. It’s similar to Bell’s palsy. She has half a smile, her right eye is slower to blink than her left, and the tumor destroyed all of her neck muscles. This is just what you can outwardly see. Thank God it’s only that, but I was bullied in middle school and I didn’t have any scars, disabilities, or anything that could be seen besides being extremely pale. I remember feeling so terrible about myself by what was said and it was non-stop. I’m sure most of us were bullied in some capacity but we all know how cruel the world can be based on how we look and now with social media kids see and hear it all the time even in the safety net of their own home they still hear the echoes of unkind words. I wish it was different. I do think it is getting better but I want it faster and on a greater impact where kids aren’t committing suicide because of being bullied. I want kindness shown on greater levels because we all have our own imperfections and my job is to protect my kids but also build them up to overcome these challenges when they do happen. Maybe this will be the platform to start small within our own community, who knows, but I want change faster for our children’s sake because at the age of four Sloane already sees the stares and hears the questions; what’s wrong with her, why does she have “crazy eyes”. Why does she have to wear eye patches, and now the hearing aid. It breaks my heart BUT as Sloane’s mother I have to teach her that confidence comes from the inside, from being brave, and from being kind. We want her to be confident and to realize looks come and go but your integrity, kindness, and love for others is what will define you. We work on this with our daily affirmations, communicating our feelings if we are sad or happy, and little things such as wearing a cape and mask that make her feel confident. It’s a constant juggle act to ensure confident children who aren’t entitled and who show kindness in a world that needs it. I mean I find myself tired just thinking about it but it’s our job as parents to ensure we send them off into the world well equipped.
This past spring we encountered something I knew was coming but not in the way I ever pictured it in my head, isn’t that always the case? Graham started in a new baseball league surrounded by kids that never met him, Sloane, or knew anything about our family. We aren’t recluses, but we do typically hang out with the same people, family, and see the same kids from both of their schools so a whole new group of kids came with lots of questions and stares. During the beginning of the season Sloane couldn’t contain her excitement for cheering Graham on. She would run up to the dug out and try to get his attention while cheering him on. It was so sweet watching her while Graham was trying to play cool and focus on the game until out of nowhere two little boys started yelling at Graham “what’s wrong with your sister, what’s wrong with her crazy eyes, she looks so weird, what’s wrong with her!!” Graham’s focused obviously changed and just looked at the boys and didn’t say one word. I think he was in shock. I was in shock. Look, as a parent navigating this new unknown I’ve learned to welcome questions and I know kids are curious! I mean I’m curious when I see something unfamiliar, but never have I ever started yelling things like that. Thankfully, Sloane didn’t care one bit and put on her super hero mask and walked away but Graham cared. I saw it in his eyes. I think in that moment he realized he was part of a story that he wasn’t sure he wanted to be apart of. So instead of speaking out, he sat silently trying to understand what this meant for him. I was left holding back my own tears while watching him process his feelings trying to decide if I should jump over the fence and fix it. Instead I knew that wouldn’t fix it and it wasn’t the place to do so, instead I just watched and let him start processing.
I didn’t address anything at the baseball field. I knew it wasn’t the time or place. I knew I would talk with Jay and had therapy the next day so I could specifically ask how in the world do you navigate these emotions with kids since I can barely navigate them myself. My therapist is amazing and said you need to validate their feelings because that’s what we all want and tell them it’s ok to feel like this. Then you give them the tools to address it so they can build the confidence to talk about. So I prepared myself for whatever was going to happen next and realized this was just part of our journey.
I knew going into this conversation I couldn’t make it a big deal. I tend to jump from 0-100 so I had to keep calm and just have a normal conversation without allowing my own emotions to get in the way. Graham and I typically have our heart to hearts right before bed so I knew that would be the perfect time. I asked him casually why he didn’t stick up for Sloane yesterday at his game when all the kids were making fun of her. He was silent for a few second and out came words that I wasn’t expecting from a six year old. “Sloane was born with a brain tumor and it’s creepy, what if my friends think I have a brain tumor because I’m her brother and then they think I’m weird and creepy like her.” With those words I knew all he wanted was acceptance because he’s six and isn’t that what we all want? Instantly I felt shocked and saddened for Sloane but in the same moment felt an abundance of love for my first child who made me a mom. I knew his pain. I remember feeling the shame of having a child with a tumor. The shame of feeling like it was my fault, feeling that I was different now because my path wasn’t the same as others. I understood every ounce of his pain and I told him that. I said “oh buddy I know exactly how you feel, I felt the same way when I learned about her tumor and it’s ok to feel like that, but we can’t let it be how we see her because she isn’t creepy or weird” and then we had a back and forth conversation about Sloane. I said we know she looks a little different but isn’t she the funniest girl? He responded yes. Isn’t she super smart? He responded yes. Isn’t she a miracle? He responded yes again. Isn’t she doing everything the doctors said she wouldn’t do? Yes again. See, she’s just like us but looks a little different, right? Yes! With each yes he became more confident. Then we talked about how it’s ok if he’s not ready to stick up for her because I knew one day he would be ready. I ended it by saying that we NEVER want Sloane to feel bad about looking different because it’s not about what’s on the outside that define us. We all have different color eyes, hair, skin tones, some have big noses, some have little noses but it’s not what’s on the outside because that not how God sees us. He sees us for what’s in our hearts so we need to build her up where she feels safest and that’s our house. We finished our talk and I walked into my room and felt defeated. Defeated because his thoughts were my thoughts at one point and my six year old was feeling emotions that I wasn’t prepared to address for myself, let alone guide a six year old through. I would rather protect him from feeling different because of Sloane but I’m starting to realize this is part of HIS story too. This story will make him become who he is meant to be. We have to encourage those feelings to be discussed and it’s ok to be sad or upset when it’s not the way you expected it but without processing and talking through it how can we ever get to the other side?
A few days later Graham was back at the baseball field and another little boy came up to Graham and myself and asked in a much kinder way this time what was wrong with Sloane. As I started to answer, Graham jumped in and goes on a five minute monologue starting from the VERY beginning. He tells the whole story of Sloane being born with a brain tumor with bits of, she’s a miracle and she does everything the doctors said she wouldn’t and she’s just like us!! After he stopped the little boy just looked up at me and said, so she was born like that? Graham with proud eyes and confident as ever knowing he just overcame his fear responded yes! Poor thing, he probably could have just said that she was born like that, but what I witnessed was him starting to become comfortable enough to talk about his sister looking different. I held back my tears and told him how proud I was of him. Watching him in that moment I realized he is learning empathy that I wish more of us knew. I know at points he still struggles with her “difference.” Just the other day he asked if “she had to get a hearing aid”. Why couldn’t we just pray for her so she didn’t have to be different anymore. I had the same conversation with him again and encouraged the prayer but also told him it’s what is needed and it’s ok to be look different. We all look different and that’s how we were created. Why I was chosen to walk this path, I have no idea because I have to fight the fears and it’s a constant battle of my mind and heart but one that I’m learning to embrace. If you haven’t seen the movie Wonder I promise you’ll laugh and cry and it’s such an incredible story of showing kindness and overcoming adversity in a world that is different. I think as human beings we need to show kindness more. This summer I read the most amazing book, Everybody Always. It’s about showing love and kindness in the simplest ways. How showing love can change someone. This book opened my eyes to so many everyday opportunities that are in front of us and we walk past them because we’re too busy or those people creep us out, or maybe they don’t think the same way I think. You know what I say. Who cares! Be kind, smile at them, and show kindness because everyone is fighting a battle; you just don’t know what it is. Here’s a wonderful link to books on kindness by another blogger. I think I’ve bought almost all of them for Christmas presents because of the messages in them. http://happyyouhappyfamily.com/books-about-kindness/
