Sometimes the smallest of moments show us the beauty of life. Those same moments can also be heart wrenching. I had one of those moments this past weekend. It was simple, it was nothing, it was beautiful, it was brutal. As a family, we were leaving our friend’s house. We were walking to the elevator of their apartment building. AJ and Magnolia were walking ahead, I was walking with Gray, while he was scooting. I was so impressed with his scooter skills. He just got it for his birthday. AJ told him once, how to use it. And that was that. Gray was able to balance, push with one foot, lift his foot up, use his foot as a brake and navigate. It was awesome.
Magnolia had a scooter when she was the same age. Three years old. Three years old is when Rett took over. We kept pushing her to use the scooter, we would have her hold on, while we put our hands over hers. She could balance, but we did everything else. As I watched Gray, the memories of Magnolia came flooding back. I had to take a deep breath. Remind myself, that isn’t where we are. It happened. At this moment, we are here. Gray is riding his scooter down the hallway, having a blast. Magnolia is walking with her daddy. She is walking and she has fought for that skill. She may not be able to ride a scooter, but she can do so much. Ahem, balance on a skateboard. Our lives are complex. We are navigating them, the best we can. There is camaraderie within the Rett community around the accepted fact that Rett parents live with grief. It comes in waves. We live moment to moment and we have no real choice what that moment will be.
As a parent of a child with a complex disorder, sometimes we have to choose positivity because life isn’t choosing it for us. Our lives are brutally beautiful.
Grayden at 3 years old, living his best life.
Magnolia at 3 years old, taking on a Rett life, but making it her best life.