Being a part of a Rett family has always been special. From the trips to Barrett’s appointments to watching her during her therapy days, it has always been special. Barrett has inspired countless people but no one more than me. Barrett has taught me what it truly means to be a fighter and to be the best person I can be. To put it into perspective, I’m not myself without Barrett.
While being a Rett sister has its challenges, it can always be accompanied by a good time. There are always kids who walk by us when we are out somewhere and just stare. They would often whisper to their siblings or their parents and look at Barrett. When I was younger it always made me mad that kids would do this. What I didn’t understand was that they didn’t have the same exposure to disabled children as I did. At a young age, I was constantly seeing my sister have seizures, eventually this became normal to me. Any time that Barrett would have a seizure I wouldn’t freak out, I was so adapted to dealing with this that it was just a part of my life that other kids didn’t experience.
I have always loved pushing Barrett around in her wheelchair, to me it was a huge responsibility to help my sister get around. One time, I was wheeling Barrett out of the car when I turned too quickly and we fell. That has probably been the scariest thing that has ever happened to me. It wasn’t because of me being stuck behind the wheelchair, or that I was unable to help stop the fall, It was because I was so afraid that I had hurt Barrett. When we fell, all I could think about was how I may have let Barrett down. But what I now realize is that none of us can ever fully let Barrett down. She has such a kind and understanding heart that even when we make mistakes, she knows that we are doing our best to make everything better for her.
Barrett is such an amazing sister and a beacon of joy in our lives. How I like to imagine her is that she is a beautiful red blossom in a sea of pink petals. Barrett has experienced a whole world of things that most people haven’t. This is what makes her stand out. I love her with all of my heart and she is my biggest inspiration. Being in a Rett family has put me in such a loving and passionate community that is determined to make a difference in the world. Barrett and I have had a very special connection with each other from the start, being twins was a very big part of that connection. I always feel like I can figure out how she is feeling and things that she likes. When we were younger and I would get scared at night I would always go sleep with Barrett. Sometimes she wasn’t to happy with me sleeping with her, but I know that she felt just as close to me as I did to her.
In every year that we have spent together I have learned so many things that most other kids haven’t had the chance to learn. Each year we spend together presents itself with more challenges that we take on together. As we are coming up on our 13th year as not just sisters, and twins, but best friends, I hope that I can become a bigger part in raising awareness for Rett syndrome.