I've been thinking for some time now about what to share next. I keep finding myself coming back to the word "expectations." I'm writing this blog and have "expectations" that I should be sharing more and/or coming up with more to share. Never sure what it is going to be though but it looms over me and inspires me to do more. Is this blog about Charlotte, is it about me, is about Rett Syndrome, is it about us as family or is it about all of us in some way or another searching to find a way to bring us together and connect? I've come to learn that expectations can be both motivating and debilitating. I think they derive from some inner passion. Passion to do what, I don't know - guess that's different for everyone.
We've started the Copaxone trial and I have certain expectations - not sure what they are but I have them. Every morning Charlotte wakes up and I'm not sure what to expect. People ask me every day - are you seeing any changes, what's happening. Others have expectations of us. Hard to sort out what's really happening and what my hopes and expectations are seeing. Wondering if just having a diagnosis has changed my expectations of Charlotte and what she is capable of.
Then I wonder, what are Charlotte's expectations? Can she express these yet, no. Does she have them, I'm convinced now that she does.
A friend just shared some excerpts from a blog written by a young woman in her mid-20s who had Rett Syndrome and sadly passed away a few years ago. Yes it's wonderful for me to find someone who can communicate what its like to have Rett Syndrome but heart wrenching that I feel I don't always understand and as a mother, feeling as though I'm not doing enough. I want to cure this syndrome. I want to open up her world. I want to understand her. I want to eliminate all of her frustrations as well as mine. I want to understand and learn everything I can. Yep, I have expectations of myself!
Karly writes:
I doubt that most people think about what it’s like to need to urinate and you can’t tell someone you need to go to the bathroom. I am not able to hold it long enough to get to the toilet, because I cannot walk there myself, so I wear diapers. It’s really embarrassing to urinate in a room full of people even when they can’t tell I am going. I have to try and calm myself enough so I can do it in front of them. Sometimes I stare off into space so I can create some privacy for myself. That’s not a seizure.
I want to focus on the apparent lack of interest that girls with Rett seem to show in the world around them. I assure you they are listening to every word. It may not always make sense to them, and they certainly won’t look like they are paying attention, but don’t let that fool you. It is not true that they are unaware. I rarely look directly at anything because I am visually limited. What I do see often overwhelms me. So I don’t look at things like the typical person would. The professionals seem to use how attentive we are with our eyes as an indicator of how much we understand. When I was young, I rarely looked directly at people. It was too much intensity. I think our brains process things very differently than a typical persons. If you are using how attentive our eyes are, as the guide to our intelligence, we will never be able to show you who we are. I have been misjudged many times by people who expect me to look directly at them, when they speak to me, or an object they want me to focus on.
I am working hard at using a sports bottle. I want to have a bottle to use that looks like everyone elses. For me, it’s been hard to be noticed when I am eating in public. I can’t stay neat when I feed myself. Even if I try hard, I have food on my face. My Mom reassures me. I have started to want to eat in private, when I am away from home.
So my perception and expectations change as I type this. I don't know what today will bring. I give Charlotte another injection today. Maybe there will be changes, maybe not. I watch with a mindful eye and a hopeful heart.
What I do know as I hear her giggling in her bed in her room above my office letting me know that she is awake, that she wakes up happy every morning and has an expectation of me to greet her and sing "You are My Sunshine, My Only Sunshine." For that one moment every morning, she smiles. For now, that is enough and an expectation that is filled for both of us every day!
xo,
Andrea and Charlotte
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