Even though Maggie is dealing with a lot, and she struggles through most of her days, she is still a kid. Sometimes that’s hard for us to remember. When you have to talk to a 5 year old about serious stuff all the time, you tend to age up the conversation a little bit.
But really, she just wants to play. She has so much physical work that’s required of her with all of her therapies, that free time is limited. And we typically let her determine what she’s going to fill that free time with. Without any real direction, she’d just run around. But that’s not because she prefers to do that. It’s the only thing her body will let her do.
She would much rather play with everyone else. And though she may want to, her body just won’t let her. As an example – at the beach a little bit ago, she would walk up to kids playing on the beach. But she couldn’t ask them if she could join. She couldn’t grab the toys and play with them. The closest she could come was walking up to them and hoping one of us would recognize what it is she wanted to do.
Kids are generally friendly at first. They’d be more than happy to play with kids they don’t know. But that usually requires some form of communication. So most other kids lose interest fast. On the beach, I actually told other kids, “Maggie has Rett Syndrome, so she can’t talk, but she would still love to play with you.” I asked her if it was ok if I told people that, and she looked at me to signal “yes”. Because once people knew, they were happy to play.
But cousins are different than other kids. They understand what she’s going through a little better. They want her to be a part of things. When her cousins came to visit a few weeks back, we had to find things that they’d be able to play together. We ended up at a park playing baseball. At first Maggie was playing on the playground, but when she noticed we were all playing baseball, she wanted nothing more than to be a part of it.
She can’t hold a bat, so I’d stand behind her, holding her hands over the bat and swinging with her. She can’t coorindate the timing or her hands to catch, so I’d hold her arms and squeeze them to grab the ball. Shelly or I would push and pull her a little to run to the bases, explaining the game the entire time.
It really is all about adapting – finding a way to allow her to play.
She ended the day with two singles, scored 3 runs and loved every minute of it. And considering one of the treatments they think might work for Rett Syndrome is, essentially, a human growth hormone, at that pace, she really could be the next A-rod.