I remember talking to some families when Maggie was first diagnosed who would tell me “it gets easier, though it may not get better.” I didn’t fully understand what that meant at the time, but I’m starting to now.
When Maggie was first diagnosed, it was traumatizing. The idea that she would have incredible difficulties throughout her life was heartbreaking. The thought that we’d never hear her voice again, was confusing. We went through a lot of emotions in those early days of Rett Syndrome and continue to battle those demons every day. But, at the same time, we are slowly getting used to it. Every day isn’t a life or death situation, though some days still feel that way. Every day isn’t a battle just to keep her from completely falling apart. Every day isn’t a tragedy anymore. It’s different.
It’s different because we know the fight now. We know that Maggie is going to wake up at 3 am, but we also know the exact position she needs to be in in order to be comfortable enough to put herself back to sleep – legs draped over mine, head cradled under my arm. We know she’s going to be exhausted by 2PM and starving by 5. And if we forget, we know how she communicates those very feelings. We know that if she’s exhausted at 10am or still bouncing off the wall at 9pm, her meds may need to be adjusted. We know if her back is out of whack, we need to focus on stretching and PT. If her arms are causing her fits, we spend some extra time doing our OT homework. If she’s not communicating at all, we need to model more for her to remind her that we also can talk using a computer.
The fight has gotten easier, but it hasn’t gotten better. Rett Syndrome hasn’t gotten better in her.
It hasn’t gotten better because the syndrome continues to take things away from her. It’s progressive and we don’t know what will happen next. At least, the progression, for the time being, has plateaued, so it’s less about physical abilities and instead it’s in terms of experiences. A typical seven year old has Opinions with a capital O. There are things they like and things they most certainly do not like. It’s very difficult for Maggie to express her opinion, especially when we don’t even know what the options are. What toys or games or movies are seven year olds into? We’ll try them all, but staying up to date with 7 year old pop culture is very trying. Is she still into Minions or has she moved on to Musicals. Does Sherlock Gnomes look as dumb to her as it does to me? Is she interested in seeing The Return of The Jedi or is that just a weird, old, dad movie? We can gather what she isn’t into, but what I wouldn’t give to know what she is. Jenny wrote about it recently in terms of her personal style. I dress her preppy. Jenny dresses her boho. Maggie may prefer rock and roll. (Article will be released in Rett Girl’s Fall Magazine)
But beyond that, the thing it continues to take from her is human interaction. She can’t play or draw or climb without someone manipulating her hands for her. She can’t express an opinion clearly to someone who is unfamiliar with her communication methods. It’s complicated for her to engage with her peers, and frustrating, I’m sure, for her peers to engage with her. We struggle with this every day. What are her relationships going to be like in a year? In five? Who is she going to have in her life, outside of us, Gray and Shelly, who can truly understand her? How can we make this part of her life easier?
It’s a struggle to think about these things long term for her, so we take them day by day. We make sure she has experiences that make her smile, memories that will stick with her. And we hope that we are making her experience with Rett Syndrome easier, even as we wait for treatments to make it better.