At the risk of being a total bummer, I am going to talk about two things Lu has said in the past few days. Sunday, after coming home from my Aunt Mary Jo's house for a hectic and fun Easter dinner, I asked Lucy if she had fun playing with her cousins. She said no. I asked her if she wanted to tell me why she didn't have fun and she said yes, and then with her PODD said, "I don't like this, makes me mad, sad, help, don't, walk". I asked her if it made her mad and sad that she couldn't walk like the other kids and she said "yes".
Monday morning Lu was having a rough time since she woke up at 3:30am and had not been able to fall back asleep. As I was trying to get her in her seat for breakfast she was crying (with tears) and really doing a lot of yelling. I asked if she had something to say and she said yes, and then said, "I don't like this, noisy, sad, me".
So, I not only have to think all of these sad things in my head and do my best to not let on to Lu that I feel sad sometimes, but now she is just saying them "out loud" and I am given the challenge of addressing her feelings and not falling apart into a puddle of sobbing goo. I read an article when Lu was first born about raising emotionally healthy children. The main thing I have always remembered from that article is that even if the emotion your child is experiencing is "unpleasant" or not really convenient for what is going on at the time, it is still their feeling. Everyone feels mad and sad, and jealous, and frustrated and all kinds of things all of the time and it is our prerogative to have those feelings. And so it is too with children. Not only do I feel it is their prerogative, but it should be expected that they would have much less control over their feelings than an adult; they have been alive for a much shorter time! And instead of trying to shoo those inconvenient and/or unpleasant feelings away, it is important to acknowledge that child's feeling and let them feel it. Don't mock them. Don't get frustrated. Don't try to gloss over what might be making them feel sad by pretending it isn't real or it's better than it really is.
So, I think it is very important to acknowledge Lu's feelings of sadness and frustration with the limitations Rett Syndrome imposes on her...even if it might be the most heartbreaking thing I have ever experienced. She has made it very clear that walking is something very important to her and we work on it daily. Her favorite walking coach is her Daddy and she does amazingly with him. She has started to be able to take some steps just holding onto his hands. This is HUGE! A year ago she could barely stand up.
And as for her comment about being noisy and sad, it is amazing (and devastating) to me that at such a young age she already realizes when she is doing something "different". She has really started yelling a lot lately, and it is not so much intentional as it is just something her body is doing, like her rocking and hand movements. But she is acutely aware of it and because of the PODD, was able to tell me it makes her sad. Bittersweet I guess. I want to know everything she thinks and feels, but it is so hard to know when she is hurting.