And lastly, I must say that I am so proud of KayLeigh for being so proud of her little brother, no matter what anyone else might think. Carter doesn't have special needs in the eyes of a 9 year old; he simply has special powers that deserve to be shared.
Monday, May 12, 2014
A day that goes down in history...
For the past few months, Carter's big sister, KayLeigh, has been asking if I will bring him to her classroom to meet her teacher and classmates. The teacher this year is so thoughtful, kind and amazing! Last fall she invited KayLeigh to eat lunch with her so that she could ask questions about her little brother. This meant the world to us! So over the months, the idea of taking Carter to a "typical" school was both exciting and terrifying for me. Through the process of putting Carter in school two years ago, I remained adamant that he would never go to a regular school around typical developing kids, ever. Typical school is hard enough as it is for kids who have no developmental delays, medical problems or behavioral differences. There was an incident when KayLeigh was in the first grade where a couple boys in her class made fun of Carter when she showed pictures and talked about him as her show-and-tell. From that day forward, I involuntarily made a vow to never voluntarily put Carter in a situation with potential for teasing. It's one thing that I don't think I could handle well. In my mind, I have played over and over all the possibilities and scenarios that could happen if I ever witnessed or heard of someone teasing my precious boy. I would totally be that crazy lady who yells and cries…at least in my mind, I imagine myself to be that woman. So as the mention of bringing Carter to meet KayLeigh's classroom have resurfaced several times over the past few months, I was faced with the reality that I would have to make a decision. Was I ready to push Carter into a classroom full of 4th graders and showcase his differences to a group of kids who may not understand?! As I looked in to KayLeigh's face as she asked me again, "mom, please bring Carter to meet my teacher…she REALLY wants to meet him", I responded without giving it too much thought because I knew I would change my mind if I did and said, "Okay, I will bring him this week." What did I say?! What was I thinking?! But once a promise is made, I can't break it; I've never been able to break a promise, especially to my children. I did as I said I would and called KayLeigh's teacher that following Monday to ask which day would work out for me to bring Carter up. We agreed on Thursday afternoon. It was done. The decision irrevocable. I had 4 days to prepare and brace myself. When the day finally came, I had a lot to do to make it possible. I dropped Lily off to my grandma's house around 12:30 and headed to Carter's school to get him by 1:00. When I picked Carter up, his teacher told me that he had had a seizure in the pool that morning; they were sure of it. So as I was embarking on treacherous waters, this was just one more thing to add to my worries for this day. But he was in good spirits and seemed fine, so we continued our plans as usual. KayLeigh's school is an hour away, so I used that time to listen to our favorite songs, sip on coffee and mentally prepare myself for any scenario. Once we arrived at KayLeigh's school, I gave myself one last pep talk before getting Carter's wheelchair unloaded, getting him situated and heading in. I walked slowing to KayLeigh's classroom, still not sure what to expect. Once I appeared in front of her door, KayLeigh waved frantically as she spotted us! She ran into the hallway to push Carter in herself. I could have cried happy tears right there on the spot! Her teacher told me that she had asked over and over all day when we would get there. KayLeigh proudly parked her little brother in front of the classroom as she kissed him and hugged him over and over. Her teacher told her to introduce him to everyone, so she proceeded to tell them his name and that he has Mitochondrial Disease which causes his muscles not to work like ours. Several hands shot up in the air. The teacher called each name one at at time so the kids could ask questions. The first child asked, "How old is Carter?" The next asked, "How old was he when he started to have the disease" and the next question is what stopped me in my tracks, "how long do you think he will live?" It took me a minute but what felt like a lifetime to compose myself and swallow down the shakiness in my voice. I explained to the classroom that statistics aren't good for kids with this disease and that we will be lucky to have him as many years as he's meant to live, but that many don't live to see their early teens. The entire class broke the silence into "awes". Then came each of their turns to come up and say hello to Carter. I could tell the kids were unsure what to say or do, which at first made me a little sad. I squatted beside Carter so I could help him wave back at each of the kids. After they had each greeted him, KayLeigh asked if I could get Carter out of his chair so he could play on the floor. Her wish was my command that day. We put him on the floor and slowly, ever so slowly, a miracle happened before my eyes. The kids slowly, slowly, slowly made their way to the front of the classroom as they circled him. I decided to get up and stand by the teacher to take pictures and the kids could watch how he plays. Before my very eyes, they scooted closer and closer until the entire class was giving him "high fives", rubbing his back and head, talking to him...until another miracle happened…Carter started belly laughing. The voices rose and laughter bubbled over. I could feel my worries dissipate and my heart swell so big. It was the most unbelievable sight I have ever seen. It was what I always wanted so badly for Carter! To have kids play with him and accept him for who he is. And that day, he made a whole classroom full of friends. As we prepared to leave, the kids asked if I could bring him again and gushed over how adorable and strong Carter is. A little boy who has picked on KayLeigh this school year, came over and asked me if he could give Carter his toy he had earned for staying on green that week. I was in pure shock! The two boys who made fun of Carter in the 1st grade, were the ones who played with him the most. All that pent up worry and anger that I had had, was all of a sudden gone. Those kids may have learned a valuable and lifelong lesson by meeting our special boy that day, but I think I learned the most from those kids. Kids are so smart, so eager to learn and so accepting; even of those who are different. It's all about understanding what difference means. I learned that I have to let my little warrior be allowed to be "normal" and teach others how amazing he is. I can't be afraid of the unknown or what MIGHT happen and simply just LET IT HAPPEN. There are so many things about Carter's life that I cannot control, nor can I predict…just like this day. I have to learn to let go of my worries for things I can't change and live in the moments that we have.